Journal of Dementia Care

For all who work with people with dementia

Vol 28 No 4 July/August 2020

An arts programme to reach rural communities

Also inside this issue:

n Determining best interests: the principles explained n Reasons for hope in the post-Covid 2020s

WEDNESDAY 11TH – THURSDAY 12TH NOVEMBER 2020 BOURNEMOUTH INTERNATIONAL CENTRE BOOKINGS NOW OPEN: Early bird discount before 16th September Plenary speakers • Parallel sessions • Interactive workshops • Symposia • Posters • Early bird sessions • Special events

A strong theme will be the way the Covid-19 pandemic has demanded changes in dementia care practice in all settings, the innovative ways challenges have been met and the way ahead.

Sessions will include: • Covid-19 – review, reflection and the road forward in dementia care • Innovations and evaluations in staff development, training and education • Creative ways to connect through technology • Music and music therapy – Individual arts interventions – Intergenerational arts practice • The ‘uniform’ question • A review and new guidelines on responding to stress and distress • Self-management, peer and early support • Care and support at home • Experience of people with dementia from minority ethnic communities • New dementia service models: Co-producing services – Social prescribing of arts – Housing with care • Best practice in sustaining post-diagnosis support groups • Reducing polypharmacy / Supporting mobility – practical approaches – non pharmacological interventions • Younger people with dementia – diagnosis and support • Carers and Families – caring in lockdown – distance caring – living grief and bereavement • LGBTQ people living with dementia There are also dedicated whole day special interest sessions on: • End-of-life care in all dementia care environments – challenges for care homes, enabling a good death, advance care planning • Dementia care in acute hospitals – Covid-19 workshop, innovation and research, arts and intergenerational practice

in association with

academic partner

Association for Dementia Studies

stream partners

satellite symposium sponsor

We are pleased to announce that 15th UK Dementia Congress 2020 will go ahead as planned but with an all-new virtual online component. The congress will now be a hybrid event, but we are currently planning to still include live, in person programming at the Bournemouth International Centre on England’s beautiful south coast.

Situated in the heart of the town and a few steps away from the seafront, Bournemouth International Centre is a purpose-built event venue offering easy access and a coastal vibe with amazing sea views. As an exciting hybrid event, we look forward to continuing to build on the success of the UK’s most well-loved multi-disciplinary congress on dementia care.

We are continuously monitoring the ever-changing circumstances surrounding Covid-19, and are focused on keeping our delegates, speakers and supporters safe during this time. We will continue to adapt to the shifting landscape and the needs and wishes of our dementia care community. We will be following the recommendations of the World Health Organisation (WHO), Public Health England and all relevant authorities in relation to the congress, and will ensure to update all attendees if measures in place will affect our plans for the event.

careinfo.org/event/uk-dementia-congress

WHY SHOULD YOU ATTEND?

PLENARY SPEAKERS

• •

People living with dementia and their supporters

• • • • • • • • •

CPD certified two-day conference programme Plenary sessions, keynote speakers and a wide choice of parallel sessions, symposia and interactive workshops Over 40 parallel sessions to choose from covering the latest in dementia care, research, policy and innovation People with dementia and carers sharing their experiences Large and lively exhibition Themed and facilitated networking sessions Congress app Poster presentations Panel discussions and audience question time Opportunities to network and socialise with like-minded individuals Drinks reception and special events

Paola Barbarino, Alzheimer’s Disease International Professor Linda Clare, University of Exeter Jackie Pool, Sunrise Senior Living & Gracewell Healthcare Dr James Warner, Imperial College London

Programme: theresa.ellmers@investorpublishing.co.uk Sponsorship opportunities: caroline.bowern@investorpublishing.co.uk Bookings: events@investorpublishing.co.uk organised by

JournalOfDementiaCare

@JDementiaCare

#UKDC2020

For all who work with people with dementia

Vol 28 No 4 July/August 2020

n Project updates & viewpoints

Inside this issue...

20

Towards a consistent service for everyone with dementia 14 Alzheimer’s Society’s new CEO Kate Lee faces hard decisions as the charity recovers from the pandemic. She talks to Mark Ivory about the challenges – and opportunities – ahead

Reasons for hope in the post-Covid 2020s

16

Despite the grim consequences of Covid-19 for our personal and economic health, there are reasons for optimism. Jeremy Hughes argues that it could galvanise change in dementia care

Coping with the Covid-19 situation when you’re living with dementia

18

30

Unsurprisingly, coronavirus has presented massive challenges for many people with dementia. Philly Hare gathered together some of the thoughts and feelings they have been sharing in cyberspace

Making our voices heard: campaigning for the rights of marginalised groups

20

Marginalised groups are beginning to make their voices heard as the National Dementia Action Alliance forces the pace. Sarah Tilsed shows how its work is making an impact

‘You’ve become a burden’ – Ron Coleman’s lockdown diary

36

22

In the second instalment of his diary, Ron Coleman describes life under lockdown with his wife Karen, “Scary Daughter” Francesca and “Top Dog” Nor. He worries about “elder cleansing”, but do they?

n Features

Psychosocial support for carers: service evaluation

24

Family carers can experience anxiety and stress in their role but often receive little formal support. Charlotte Dell and Fay Williams conducted research to find out which psychosocial interventions are most helpful

Regulars

Low-investment video and music activities evaluated

n Comment

30

Can low-cost activities like watching nature videos accompanied by classical music reduce stress and improve care for care home residents? Robert Rados and colleagues report on the findings from their investigation

Determining best interests: the principles explained

33

How should the best interests of a person who lacks capacity be established? In her second contribution to our series on hospital dementia care, Elizabeth Champion sets out good practice in reaching best interests decisions.

Our day out: an arts programme in rural Norfolk

36

Evidence is growing for the benefits of the arts for people with dementia, but those living in rural communities can be hard to reach. Hannah Zeilig explains how one project found an answer

n News

10

n Dementia Diaries n Perspectives

by Mark Ivory

n Research reports n Books

n Resources

5 6

n JDC Asks

n Events

4 The Journal of Dementia Care July/August 2020 Vol 28 No 4

by Martin Green

11 17 39 41 41 43

COMMENT

@JDementiaCare @JournalofDementiaCare www.facebook.com/ JournalOfDementiaCare Editor Mark Ivory Managing Editor Sue Benson Research Editor Theresa Ellmers Production Andrew Chapman Designer Rob Wheele Editor-in-chief Dr Richard Hawkins Advertisement Manager Caroline Bowern Subscriptions Tel: 020 7104 2000 subscriptions@investorpublishing.co.uk The Journal of Dementia Care is published six times a year by Investor Publishing Ltd, 1st Floor, Greener House, 66-68 Haymarket, London, SW1Y 4RF. Editorial: Mark Ivory mark.ivory@investorpublishing.co.uk Advertising: Caroline Bowern 07974 643292 caroline.bowern@investorpublishing.co.uk Subscriptions Investor Publishing Ltd, 1st Floor, Greener House, 66-68 Haymarket, London, SW1Y 4RF. Tel: 020 7104 2000 subscriptions@investorpublishing.co.uk

Subscription rate, zero-rated for VAT: £101.00 if paying by credit card or invoice £91.00 if paying by Direct Debit (UK only).

Add £20.00 mailing charge for Europe Add £30.00 mailing charge for Worldwide More details at: www.journalofdementiacare.co.uk

© HAV 2018 Ltd ISSN 1351-8372

Journal of Dementia Care Advisory Board Caroline Baker, Barchester Healthcare Professor Dawn Brooker, University of Worcester Dr Nori Graham, Vice President, Alzheimer’s Society and Alzheimer’s Disease International Tessa Gutteridge,Young Dementia UK Jo James, Imperial College Heathcare NHS Trust Rachel Niblock Dementia Engagement and Empowerment – people living with dementia Sahdia Parveen, University of Bradford Maria Pasiecznik Parsons, Creative Dementia Arts Network Lynne Phair, independent consultant nurse & expert witness Jackie Pool, Sunrise Senior Living Professor Graham Stokes, HC-One Professor Claire Surr, Leeds Beckett University Dr Amanda Thompsell, South London and the Maudsley NHS Foundation Trust Toby Williamson, independent consultant Lucy Whitman, writer, editor and trainer in dementia care

Consultant editors Professor Jill Manthorpe, Professor of Social Work, King’s College London.

Dr Hazel Heath, independent nurse consultant: older people

We must have root and branch reform Professor Martin Green, Chief Executive, Care England ovid-19 is the biggest health emergency that we have faced, probably since the flu pandemic of 1918/19. As well as exposing the heroic efforts of the care and health staff, we have also seen that some of the organisations and institutions that surround us are not fit for purpose in a crisis.

From the start everybody’s focus was on the NHS and to some extent I can understand that. But we should really have focused on care homes because every single person living in a care setting has many health conditions and should have been seen as someone at high risk. Our inability to get hold of personal protective equipment (PPE) had an impact on our capacity to stop the virus spreading and also had a major impact on staff.

In future one of the many lessons that we must learn is that we cannot disrupt the existing supply of PPE to care homes in order to divert it to the NHS. At the start of the pandemic we had countless examples of our supply lines being diverted and there was not a quick enough response from local and national bodies, including Public Health England and the government.

Guidance on how to use PPE was slow to arrive and constantly changed, which was really unhelpful and did not give us any surety that the information and advice contained in it was correct. If we are going to have Public Health England, then it needs to be seen as the only authoritative source of advice. If we have endless organisations issuing their own interpretations, why bother spending millions of pounds on one centralised organisation?

This pandemic has placed enormous cost pressures on care providers and the government allocated significant amounts of money to local authorities to take account of these added costs. Sadly, little of this money reached the front line, despite the fact that even before Covid-19 we saw a 6% increase in the living wage and also other associated costs rising. Many local authorities have been offering derisory and completely inadequate uplifts.

Clinical commissioning groups (CCGs) have abandoned social care and very few have either contacted care providers or offered any of the extra money they have received to the front line of care. When the pandemic began many providers were completely abandoned by primary care, GPs writing to say they would not be coming into care homes or admitting any residents to hospital. One GP even suggested we should just put “do not resuscitate” on everybody’s care notes, totally unacceptable but an indicator of the ageism that is part of our health system.

Despite all these issues, care providers have risen magnificently to the challenge of this pandemic and we have seen great improvements in some areas of the system. The challenge for the future must be to ensure that we maintain these gains but also have root and branch reform of how we fund, respect, and reward care staff and care providers.

C

The Journal of Dementia Care is a multidisciplinary journal for all professional staff working with people with dementia, in hospitals, nursing and residential care homes, day units and the community. The journal is committed to improving the quality of care provided for people with dementia, by keeping readers abreast of news and views, research, developments, practice and training issues. The Journal of Dementia Care is grounded firmly in practice and provides a lively forum for ideas and opinions.

Writing for JDC:

Do you have a project or survey to report, or a change in practice organisation or structure which has worked well (or not), and would you like to share this experience with others? Do you have a strong opinion you would like to express?

We welcome letters and contributions that promote discussion and debate about dementia care.

Contact the editor, Mark Ivory: mark.ivory@investorpublishing.co.uk

Vol 28 No 4 July/August 2020 The Journal of Dementia Care 5

NEWS

News in brief Macaskill: lessons to be learned Scottish Care chief executive Donald Macaskill, who represents independent health and social care providers, has admitted that lessons need to be learned from mistakes made in protecting care home residents and staff. “If I had known eight weeks ago what I know now, we would have reacted differently,” Macaskill said in May. He said that care homes had been in “completely uncharted territory”, but that the sector had “more than done what it could have done - actually almost to a sacrificial extent.” In future, care homes would be “much more aware” of measures like testing and PPE, he added. “I think there are lots of lessons we can learn. One of them is that we develop infection control that acknowledges that we are dealing with someone’s home and not a hospital. We need to realise that most people in the care homes have dementia and they will wander around, short of locking them up and pumping them full of drugs.” By the end of May total deaths linked to the virus in Scottish care homes reached 1,818, three more than the 1,815 deaths in hospitals.

Surge in loneliness under lockdown Alzheimer’s Society has expressed concern about a surge in rates of loneliness among people with dementia as a result of coronavirus. It follows a survey which found that around a third of people with dementia and two-thirds of carers were already lonely before lockdown. Research

by Exeter University, supported by the Society, showed 44% of family carers interviewed reported moderate loneliness and 18% reported severe loneliness. These carers tended to have smaller than average social networks, lower life satisfaction and more stress from their role.

When people with dementia living in the community were interviewed, 30% reported moderate loneliness and those with depression or living alone were more likely to say they felt lonely. “The loneliness so many people affected by dementia were experiencing before the nation was put in lockdown is frightening and, as a charity, we’re extremely concerned at the further impact coronavirus will have on these figures, with people feeling so much more cut off,” said Alzheimer’s Society CEO Kate Lee.

Leaflet offers self-help advice A leaflet from leading research institutions offers practical self-help tips for people with dementia and their carers during the Covid-19 outbreak.

It is the first fruit of a major project, partly funded by the National Institute for Health Research, to support people affected by dementia through the emergency. Researchers involved in the project said families had described concerns about maintaining supplies of food and medications, anxiety about what would happen if they were admitted to hospital, lack of confidence, feelings of loss and grief, increases in symptoms like agitation, and a more rapid decline in cognitive and functional ability. “This project aims to provide robust information, developed with the crucial input of people affected by dementia, to offer support through this crisis,” said Exeter University’s Professor Linda Clare. Go to www.idealproject.org.uk/covid for the leaflet.

Genetic link to Covid-19 risk A gene that predisposes people to Alzheimer’s disease may also account for figures showing that people with dementia are at significantly higher than average risk of a severe Covid-19 infection.

Data from the Office for National Statistics revealed that the virus was the leading cause of death among male care home residents between 2 March and 1 May in England and Wales, accounting for 30.3% of these deaths, and the second leading cause among female residents after dementia, accounting for 23.5% of these deaths. Researchers found that those with the e4 variant of the APOE gene, associated with a 14-fold increase in Alzheimer’s disease risk, also had more than double the risk of getting a severe Covid-19 infection. The study focused on 500,000 UK Biobank volunteers, aged 48 to 86, who tested positive for Covid between March 16 and April 26. “APOE e4 genotype predicts severe Covid-19 in the UK Biobank community cohort” was published in the Journals of Gerontology on May 26

6 The Journal of Dementia Care July/August 2020 Vol 28 No 4

Nearly 1 in 5 coronavirus deaths linked to dementia Alzheimer’s Research UK (ARUK) called for urgent action after it emerged that nearly one in five (18%) of people dying from Covid-19 also had dementia.

The charity said that, of the 22,332 patients who died between the end of March and middle of May, 4,048 of them had dementia. “While it’s still unclear what’s behind the link between Covid-19 and dementia, we do know that people with dementia are more vulnerable to certain infections,” said ARUK policy and public affairs director Samantha Benham-Hermetz.

“Age is the biggest risk factor for dementia, and with older people also more likely to experience severe symptoms from Covid-19, this may partly explain the high number of deaths. It is also possible that people with dementia may be more likely to have been exposed to the virus due to high rates of

infection in care homes.

“As a matter of priority, government must protect people with dementia and more research is needed to understand why people with dementia are so badly affected

by Covid-19, so that the right measures can be put in place to prevent further deaths.”

As JDC went to press, the latest official figures showed 759 care home residents had died from Covid-19 in the week ending 29 May, compared with 3,627 such deaths at the peak of the pandemic (w/e 24 April).

However, a study by the LSE of excess deaths during the pandemic up to 1 May, suggested that the true number of deaths from coronavirus among care home residents could be more than twice as high as official figures. It put the true figure at 22,000, compared with an official figure of 8,312 up to that point.

Action plan for social care A government action plan to beef up support for adult social care during the pandemic, launched in April after an angry attack on its performance from care sector bodies, was designed to boost access to personal protective equipment (PPE) and ramp up testing.

Yet as late as mid-May an Alzheimer’s Society survey of 105 care homes found that well over half of them were unable to isolate residents with Covid-19 and two-fifths were still experiencing problems accessing PPE. National Care Forum complained of “testing chaos” in care homes, while some providers claimed that they were paying five times more than usual for PPE. Although the government gave local authorities £3.2 billion to tackle the pandemic, only a proportion found its

way to frontline care to the extent that an additional £600 million announced in May specifically for infection control was paid directly to care providers.

Two days before health secretary Matt Hancock launched the action plan, care organisations including Alzheimer’s Society wrote to tell him that lack of PPE and testing was putting the lives of staff at risk.

“We are writing together as charity and care sector leaders on behalf of the hundreds of thousands of our most vulnerable people reliant on social care and the hundreds dying in care homes, supported by an army of incredible, often low paid and undervalued care workers who are not trained to deal with death on this scale,” the letter said.

NEWS

Experts call for regular testing for Covid-19 in care homes Regular testing in care homes is essential to contain coronavirus outbreaks, experts have said, after official figures indicated that well over a third of homes had been affected.

In May the government admitted that 5,889 care homes – 38% of the total - had had a suspected or confirmed Covid-19 outbreak, while the Office for National Statistics said that coronavirus had become the leading cause of death in male residents and the second leading cause in female residents.

Academics from the UK Dementia Research Institute (DRI) urged care homes to conduct comprehensive and repeated testing to manage infections. The DRI, which undertook a coronavirus outbreak investigation in four London nursing homes, found rates of infection running at 40% with 60% of those infected either asymptomatic or with atypical symptoms.

LSE academic Adelina Comas-Herrera, in a report comparing different countries, said large numbers of care home deaths were “not inevitable” and appropriate measures could be taken to

prevent and control infections.

“There is also growing evidence of asymptomatic transmission in care homes, which highlights the importance of regular testing in care homes instead of relying on symptoms to identify people with potential Covid-19 infections,” ComasHerrera said.

“Geriatricians are also raising concerns that, among care home residents, the symptoms of Covid-19 may not be the typical cough and fever that is covered in the guidance documents for care homes in many countries, but that a range of other symptoms (such as delirium, diarrhoea, lethargy, falls and reduced appetite) are more frequent among care home residents with Covid-19.”

Pete Calveley, Barchester Healthcare CEO, told viewers of JDC’s webinar on combating coronavirus that up to 30% of asymptomatic residents had Covid. “Everyone should be tested at least every four weeks,” he added. “You can’t trust symptoms at all and the only way you can find out whether anybody’s got it is to test,” he said.

News in brief Family carers ‘overwhelmed’…

More than half of family carers (55%) say they feel overwhelmed by their caring responsibilities during the pandemic and worry about burning out in the coming weeks. A survey of nearly 5,000 unpaid carers by charity Carers UK found that 70% of them were having to provide more care for loved ones, often because local services had been pared down or closed. On average, carers were picking up an additional 10 hours of care each week involving personal care, practical tasks and emotional support. “Carers tell us they feel ignored and invisible in this epidemic,” said Carers UK chief executive Helen Walker. “The government must ensure their physical and emotional wellbeing is supported at this challenging time and monitor the impact of the reduction in care services on carers.”

… and feeling loss of control Challenges faced by family carers during lockdown have been highlighted in research which suggests that it has severely disrupted their sense of control and autonomy. Research conducted by support organisation Mobilise with the universities of Liverpool and Sheffield indicates that the early stages left many carers feeling overwhelmed.

One said, “it’s like a prison; the walls are closing in,” while another expressed concern about the impact on loved ones’ functioning: “My biggest fear… is that by the time it is all lifted, my mum will have forgotten me.” But by the second week of lockdown, researchers said, carers were beginning to overcome their frustration and make small changes to daily routines.

Negative stereotypes damaging health Research from charity Independent Age concludes that negative stereotypes widely held about older people could be damaging their physical and mental health. The research challenges the common assumption that older people are always financially secure and leading carefree lives and warns that Covid-19 has magnified existing problems and brought new ones to the surface. A survey of more than 2,600 people over 65 found that almost one in eight had heard, or had been on the receiving end of, ageist language during the crisis, misguided views that have the potential to cause lasting damage to individuals, as well as sending societal attitudes towards older people backwards, Independent Age said. Go to www.independentage.org for In Focus: Experiences of Older Age in England.

Benefits of support via video-link An Australian study has uncovered evidence that health and care support via video-link can be as effective as face-to-face home visits.

Research with 63 people living with mild to moderate dementia and their care partners discovered that “telehealth” services, using videoconferencing technology, could both save travel time for care workers and equip families with strategies to promote the independence of people with dementia. “Giving families evidence-based information and skills can promote independence and improve quality of life and wellbeing for people with dementia,” said lead researcher Kate Laver, associate professor at Flinders University.

Admissions via hospitals being limited

Telling tales: An intergenerational project at Surrey care home group CHD Living helps pupils develop storytelling skills while providing residents with companionship and mental stimulation. Audrey Roberts, a 94-year-old former art and ballet teacher, is pictured sharing examples of her work with students from School 21 in east London.

Independent care providers told a representative body that they were limiting admissions to their services from hospitals for fear that they may have coronavirus, but they admitted that this policy was not financially sustainable in the long-term. A membership survey by the National Care Association (NCA), which received more than 200 responses, found that providers had spent 323% more than they normally would on stocks of personal protective equipment (PPE) since the start of the pandemic and accused suppliers of profiteering by raising prices for essential items. NCA chair Nadra Ahmed said extra funding for social care from the government had not materialised on the frontline. “This is the unfolding tragedy of the decisions taken not to support vulnerable people in social care settings,” she added.

Vol 28 No 4 July/August 2020 The Journal of Dementia Care 7

NEWS

News in brief Study of impact from service closures The impact on people with dementia of local service closures during the pandemic is being examined in a national study co-funded by Bradford University. Dr Kathryn Lord, a senior research fellow in the Faculty of Health Studies, said the goal was to ensure that these services were not forgotten as the lockdown is eased. She said: “We are looking at the impact of social service closures and how they affect people. This might be things like accessing day centres or having befrienders coming round. We will be looking at people’s mental health, anxiety, depression, how they are feeling, together with the impact of stopping these services so suddenly. The goal of the study is to help them during this time but also build a case for reopening these services post-lockdown.” Dr Clarissa Giebel from Liverpool University is leading the study.

Rescue package will help dementia charity At least one dementia charity will be among the beneficiaries of £22 million in cash grants to help them meet demand for their services.

Part of a £750 million funding package for charities previously announced by the government, the grants will go to a broad range of health charities providing “vital support and advice”. Alzheimer’s Society was named by the government as one of the recipients. “This epidemic has had huge consequences for us all, but for some it has been especially difficult, leading to loneliness, anxiety and other mental health challenges,” said health minister Nadine Dorries.

Alzheimer’s Society has said that its losses as a result of the pandemic could be as high as £45 million.

Research into dementia and diabetes A new study has cast light on the links between type 2 diabetes and dementia, building knowledge of the connection and improving practice. Awareness of the link between the two conditions is “poor” and there are few recommendations to guide clinicians on how to approach cognitive dysfunction in people with diabetes, the study paper in Lancet Diabetes & Endocrinology says. Titled “Type 2 diabetes and cognitive dysfunction – towards effective management of both comorbidities”, it looks at issues relating to screening and diagnosis of cognitive impairment and dementia in people with type 2 diabetes and emerging therapies for prevention.

JDC holds first webinar Speakers in the Journal of Dementia Care’s first ever webinar talked about how care homes had fought for residents’ right to be treated for coronavirus and how “blanket decisions” by healthcare professionals had had to be challenged.

Kara Gratton, a senior manager for Milford Care care homes, said staff had had to be supported when health professionals tried to deny residents with dementia the help they needed, for example by applying “do not attempt resuscitation” notices without individual consent.

“Testing has been very challenging but again we have been fighting for the right for residents to have a swab,” Gratton said. “There are signs and symptoms that older people living with dementia can experience that aren’t just the traditional covid cough, temperature and flu-like symptoms. If someone doesn’t seem quite right, we talk to the GP, but we also apply for the test.”

Independent nurse consultant Lynne Phair told webinar viewers that residents’

rights had to be defended. “It’s really important that moving forward everyone is very confident about what people’s rights are and that the MCA and the best interests decisionmaking process have not been affected by the Coronavirus Act.” Gratton said she was concerned that as the lockdown was eased complacency could set in among staff. “We’re going to talk with staff about not just giving it up, that we need to carry on with the PPE, handwashing, continually wiping down surfaces and keeping areas clutter-free.”

Pete Calveley, CEO of Barchester Healthcare, commented that incidents of distressed behaviour and staff assaults had gone down significantly during the pandemic. Gratton agreed: “We’ve also noticed that those people who are sometimes a bit distressed do seem a lot calmer, and we’ve wondered whether it might be that the environment is calmer.”

To see the webinar, go to www.ipevents.net/journal-ofdementia-care-webinars

Review of interviewing methodologies How do you overcome the ethical, methodological and practical challenges of interviewing people with dementia for the purposes of social care research? A new review from King’s College London’s Dr Kritika Samsi and Professor Jill Manthorpe seeks to answer the question, casting light on issues like gaining consent, taking account of the symptoms of dementia, and analysing data. Aids such as Talking Mats and field notes are also discussed in the report, Interviewing people living with dementia in social care research, available at www.sscr.nihr.ac.uk.

Pain management smartphone app A smartphone app is being developed by Canadian computing scientists to help healthcare staff assess and manage pain in patients with dementia or other neurodegenerative diseases. A proven pen and paper observational checklist will be converted into a form suitable for the app. “The challenge with understanding pain in patients with dementia is that the expressions of pain in these individuals are often mistaken for psychiatric problems,” Eleni Stroulia from the University of Alberta told Medical Express. “So we asked, how can we use technology to better understand the pain of people with dementia? Our work is to develop an application for nurses to use, as well as a back-end repository that stores and manages this data safely.”

8 The Journal of Dementia Care July/August 2020 Vol 28 No 4

Beating Covid: Sue Ferry, who works at Dene Holm care home in Kent, is pictured back at work after a severe bout of coronavirus. The asthma sufferer spent two weeks in hospital with pneumonia but has made a full recovery.

“I have worked at Dene Holm for 16 years and as a team we’re pulling together,” Sue said.

Charity Commission clears Society of mishandling bullying An investigation by the Charity Commission has cleared Alzheimer’s Society of mishandling bullying and harassment allegations when its former chief executive Jeremy Hughes was still in post.

Guardian newspaper journalists uncovered allegations that there was a toxic culture and that substantial sums had been paid out to former staff in nondisclosure agreements, both claims denied by the Society.

But the Charity Commission reported that no evidence was found that “confidentiality clauses used by the charity were designed to or would have had the effect of preventing staff from reporting any whistleblowing, bullying, harassment or discrimination complaint.”

Alzheimer’s Society welcomed the commission’s verdict, which also found that “allegations reported in the national media around the amount of money paid out in settlements were not substantiated

by the evidence the commission saw.”

But the Society said the findings had been an opportunity for reflection as well.

“We have updated our policy on settlement agreements, which is informed by the Acas Code of Practice and we have instigated an independent review of our procedures for raising concerns to ensure it is absolutely best practice,” said Society chair Stephen Hill.

See interview with Alzheimer’s Society’s new chief executive Kate Lee on page 12.

Care providers face funding struggle Care providers are continuing to struggle financially even as deaths from coronavirus have come down and the government has pumped extra money into the system.

Mike Padgham, who runs care homes in the north of England and chairs the campaigning Independent Care Group (ICG), said financial aid must be given directly to care providers to prevent “many from going under as they battle coronavirus”.

He called for the Care Quality Commission (CQC) to waive or refund 2020-21 registration fees, government support to be delivered via the CQC, and a government indemnity for care providers who are sued over Covid-19 deaths.

“Whilst deaths are falling, we must not lose sight of the fact that care providers are continuing to struggle financially and there is a very real danger that some will fail,” Padgham said.

“Providers are seeing falling incomes, through a lack of new clients, and rapidly rising costs from extra staffing and PPE and they need urgent help on the front line now.”

A snap survey carried out by the UK Care Guide website indicated that the pandemic had had a powerful negative impact on public attitudes to long-term care. The site has seen a 40% drop in the number of people looking for care homes and 93% of survey respondents said the virus had put them off currently using a care home for a loved one.

Joint statement on communication with relatives during pandemic Good practice in communicating with relatives of people living in care homes during the pandemic is set out in a joint statement issued by the National Care Forum (NCF) and the Relatives & Residents Association (R&RA).

R&RA director Helen Wildbore said the organisation’s helpline had heard from callers anxious about the welfare of loved ones whose care homes had not kept them informed.

“For families who are not receiving information and updates from their relative’s care home, this can compound their anxiety,” she added. “Open and honest flows of communication are central to good care.”

The NCF, which represents care homes, said the statement set out shared expectations and good practice on “clear, open, transparent and regular communications” during the crisis.

Go to www.nationalcareforum.org for the Keeping Connected statement.

Healthy drinking: Borough Care’s activity lifestyle facilitator Joanne Sherratt (left) and deputy manager Julie Williams make “mocktails” during Nutrition & Hydration Week at Lisburne Court in March. The Stockport care provider laid on tasty treats to raise dietary awareness, noting its importance for the wellbeing of residents.

Welsh bonus for social care workers: A one-off tax free payment of £500 to social care workers in Wales has been promised by the Welsh Government in recognition of the commitment they have shown during the pandemic. But there was criticism from the GMB union of plans to tax the payment by the Treasury because it is employment-related.

“This payment was a thank you in recognition to workforce, but it seems as though the chancellor is determined to pick their pockets to take a share for himself,” said GMB social care lead Kelly Andrews.

Football and dementia: Former Wales international footballer Alan Jarvis may have had dementia due to heading the ball, said a coroner who likened it to an “industrial disease”. Jarvis’s brain has been examined by Glasgow researcher Dr Willie Stewart, who last year published a study suggesting that professional footballers are three and a half times more likely than average to die from neurodegenerative diseases. Coroner John Gittins said the possible link between heading the ball and dementia would be explored at a further hearing. Heading the ball has already been banned for children under 12 during training.

Vol 28 No 4 July/August 2020 The Journal of Dementia Care 9

JDC asks...

What is the most important lesson to be learned by the care sector from the coronavirus outbreak? he people who live in our homes are central in everything we do and our biggest issue has been maintaining their rights to health care when they become ill. Residents have been refused Covid-19 testing, paramedics have refused to take them into hospital, a GP bullied a resident into signing a “do not resuscitate” form and NHS 111 told us: “He won’t be going into hospital because he’s old and has comorbidities; he’ll be prescribed anticipatory medication and end of life support.”

It’s an attitude that seems to say, “they’re old and they’re going to die anyway”. One paramedic told a resident “I can take you to hospital but can tell you now you will die from this and even if they put you on a ventilator you won’t recover.” Another commented: “If these people were animals they’d be put down.”

Such situations are not happening all the time, but it seems like life for older people has been completely forgotten and their views about their health do not matter.

Dementia is completely overlooked; it is as if no one understands it or has even thought about the realities.

We can care for people with Covid so that their health, wellbeing and quality of life are protected, but if someone with dementia does not understand social distancing and wants to interact with others, how can we protect them?

Despite NHS and CCG staff trying to convince us otherwise, our experience in many situations has been that

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From left: Kara Gratton, Zena Aldridge, Hilary Woodhead, Des Kelly and Lynne Phair

blanket decisions to refuse hospital admission to older people are being applied. This is illegal and totally unacceptable. We have to fight for our residents’ rights and not just accept what other health professionals are saying, but we have been met with hostility, shouted at, told we are being obstructive, not being part of the national effort, or not following the law and guidance, which we absolutely are.

Care home residents are entitled to health care and staff in all organisations need to accept partnership working with care homes so that residents receive the health care that is their right.

Kara Gratton is care and development manager at Milord Care. espite policy and rhetoric about health and social care integration gaining momentum, Covid-19 has demonstrated how far away we are from reaching an equitable system. The NHS has had significant investment to support its efforts with the virus, but investment in social care, family carers and the wider system has lagged behind.

The compassion and commitment of those in the

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10 The Journal of Dementia Care July/August 2020 Vol 28 No 4

wider system has not gone unnoticed as they have risen to the challenge of caring for the oldest and frailest in our society. For many of them this is nothing new. They have been silently fighting another pandemic for some years now with little recognition or support.

Worldwide, around 50 million people have dementia; annually, there are nearly 10 million new cases and all will die with, or from the condition. Much of the care and support provided to people with dementia is through social care, charities, families, voluntary and private sector staff but they are not held in the same regard as the NHS. Perhaps it is due to the lack of value placed on older people in our society and/or the fact dementia is noncommunicable. As we learn to live alongside Covid-19, we need to challenge our societal norms and values. We need to recognise the value of a truly integrated system between health and social care, where admiration and investment is accessible to all – not just some.

Zena Aldridge is Admiral Nurse research fellow at Dementia UK and has been working with the Norfolk

Admiral Nurse team during the pandemic n May I attended my uncle’s funeral by Zoom: there were five people actually there, and countless others by live stream. Then I Skyped my mother in Portugal, who didn’t leave the house for three months during lockdown but used video messenger throughout to keep her friends updated on how well her roses were doing.

And, soon afterwards, I chaired the virtual NAPA team meeting.

We are adjusting to our new ways of working and enjoy our daily catch ups, despite being video bombed by barking dogs and restless teenagers. Contact with others is vital for our wellbeing.

During lockdown, we’ve had to think on our feet and use the tech that previously baffled us.

Every day, NAPA members share spirit-lifting stories of how digital communication is becoming embedded into daily activities - a fantastic substitute for seeing someone in the flesh! But, browsing my Twitter feed, I was reminded that a visit in person is very important too of course.

The Old Hall Care Home, a NAPA member, had tweeted a

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video of a day in the garden.

By appointment, family visitors entered through a side gate. Staff in PPE took their temperatures. When authorised, they made their way to a large table, where family members waited. The screams of joy, and the tears of love, were magical.

What have we learned? We must embrace the technology and use it to its best ends. But we must also do what we can for residents to see loved ones again, in the safest possible way, to experience the magic.

Hilary Woodhead is executive director of NAPA rotect the NHS” was a central message encouraging us all to stay at home to prevent the spread of Covid-19 and avoid overwhelming health services.

It appeared largely to work as the NHS proved to be a rallying point and people stood outside their homes clapping on Thursday evenings.

In fact, the Thursday applause also came to acknowledge the contribution of care workers and represented public recognition that health and social care belong together.

Both have provided vital support services during this devastating pandemic.

We were ill-prepared for the pandemic, acted too slowly, and ignored the advice to “test, test, test”. But, for me, the biggest false step has been the failure to realise that health and social care services need to be properly aligned. Only when all parts of the system work seamlessly together, with parity of esteem, can the potential of the social care sector be fully realised.

The Covid-19 pandemic is a very high price to pay for raising awareness among politicians, policymakers and the wider public as to the consequences of years of undervaluing and underfunding both health and care sectors. An outstanding NHS is only possible if the social care system functions equally well – they are interconnected.

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It is my sincere hope that overdue reform of social care will now be actioned in ways that appropriately recognise its value to the quality of life of society.

Des Kelly is chair of the Centre for Policy on Ageing and former executive director of the National Care Forum care home is neither a hospital nor a person’s own home and good practice in dementia care upholds this in normal times.

Some people living with dementia have challenges and may walk about or touch things repeatedly. These require skilled approaches in normal times but, in the pandemic, they needed special attention.

There has been guidance from various national organisations, but there is a paucity of practical guidance for care homes about how to manage the need for isolation when a person is actively walking about or how to keep a home homely but reduce infection risk.

We have seen care homes doing their best to keep people safe. Yet in some cases the virus swept through the home like wildfire while other homes either contained it or kept virus-free. Infection control principles were applied very differently in different homes.

Some homes possibly wanted to keep a homely atmosphere and it will be important to work with infection control services to ensure they understand the therapeutic value of a homely environment and produce national guidance for any future outbreak.

But there must also be an honest review of the types of infection control measures that were in place in different homes. Such a review must go beyond concerns about personal protective equipment and testing when we come to examine the reasons for this tragedy.

Lynne Phair is an independent nurse consultant

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Dementia Diaries People living with dementia from groups in the DEEP network are using a voicemail number on their phones to record their thoughts and experiences of living with dementia, wherever and whenever they feel like doing so.

This time we feature three of our Diarists – Raymond Waddington, Tommy Dunne and Dory (Teresa Davies) – all reflecting on the emotional impact of the coronavirus crisis. You can sense how it helps them to let these feelings out.

Raymond’s Diary is short but poignant: “I’d just like to say, through this lockdown, I’m finding it very hard to cope lately. Some things are happening and I can’t explain why I’m doing them. And it’s getting a bit upsetting.”

Next, Tommy Dunne records a Diary – he’s also having a bad day: “Dementia’s got me today. It was a long night fighting with demons. I can’t get out of the quicksand…my energy’s been sapped, my head’s completely empty. I hate days like this because I know that if I don’t keep on fighting Dementia, it will win and I won’t be coming back…

“I know I’ve been through many days like this before, but they’ve become even more and more exhausting… I want to put on a brave face now, because I don’t want my wife to know that the Black Dog is here today. But no, I’m going to fight it. I’ll be glad when this Coronavirus goes, because I need the help of my peers to help me get through these days.

“No. I’m not going to let it win. I’m going to fight it today. I’m going to fight it today. I’m going to fight it today. I’m going to win today. I’m going to win today. It’s not getting me today.”

And finally Dory: “I haven’t been feeling very good and suppose a lot of others have been feeling the same. The last couple of weeks I’ve been quite down. I was feeling down anyway but then a friend of mine died of Covid-19. A very nice lady.

Living with dementia… it’s took me a while to get over that….

“It’s the first day really I got up and not had to give myself a good talking to, but I suppose with this lockdown we’re all feeling up and down. I don’t miss company so much because I live alone and I’m quite happy in my own company… But what I miss is going out and about, and my train journeys - probably a silly thing to miss. But we have all got to stay safe and the quicker this will be over.”

The Dementia Diaries project was started by On Our Radar and is now part of DEEP, ‘The UK Network of Dementia Voices’, with support from Innovations in Dementia. Find out more and listen to the Dementia Diaries at www.dementiadiaries.org, or on Twitter @dementiatweets. For more information about DEEP, visit www.dementiavoices.org.uk.

Finally, are you - or do you know someone who is - living with dementia who may like to become a Diarist? We’re always looking to recruit more people, and it’s very simple to record your own reports. Or you may have ideas about using the Diaries for research, media, education or other projects. If so, do contact philly@myid.org.uk. Thank you for your support!

Philly Hare, co-director, Innovations in Dementia

Vol 28 No 4 July/August 2020 The Journal of Dementia Care 11

AWARD ENTRIES NOW OPEN THURSDAY 12TH NOVEMBER Note to entrants: We have tried to keep many of the awards categories as open as possible so that a variety of people, organisations and collaborations involved in the dementia care community are eligible to apply. This includes, but is not limited to, day care and community settings, home care providers, third sector organisations, hospitals, businesses, social enterprises, housing and extra care organisations. If you have a question, don’t hesitate to contact us.

Outstanding Dementia Care Resource This award will be made to an outstanding resource which can be shown to have transformed the lives of those living with dementia and/or their carers.

Outstanding Dementia Care Innovation This award recognises the vital role of new and stimulating innovations in developing high quality services for people living with dementia.

Best Dementia Carer This award recognises the vital role of the care assistant in providing quality care. Evidence of dedication, sensitive handling of matters of importance to residents, and career progress through training will all be taken into account.

Best Activities Co-ordinator for People Living with Dementia This award will be made to a person within a care home or community setting with more than 50% of people living with dementia who has made an exceptional contribution to the quality of life, health and happiness of all the people they work with through the activities they facilitate.

Best Dementia Care Practitioner • NEW FOR 2020 This award will be made to an outstanding dementia care practitioner (eg nurse, dementia lead or allied professional) who has demonstrated an expert level of skill, knowledge, management and leadership. They will have supported their colleagues in delivering high quality dementia care either in an acute, residential or community setting, facilitating staff training, developing person-centred care pathways and delivering improvements in dementia care practice.

Best Dementia Care Manager This award will be made to an outstanding dementia manager (or deputy) in a dementia focused environment.

They will be expected to show exceptional leadership, caring, training and management skills for the benefit of people with dementia and staff.

Best Dementia Garden This award will be made to a dementia focused garden in any setting which has outstanding features that significantly enhance the quality of life of people with dementia and staff.

Best Dementia Training Initiative This award recognises the vital role of effective training in dementia care. It will be made to an individual, organisation or collaboration that can demonstrate the value and impact of a training initiative which they have successfully implemented.

Dementia Care Champion This award will go to an exceptional person, whether they are a member of staff, a relative, person with dementia or a volunteer who has gone above and beyond and made a real difference. It could be a charitable achievement or making life better for people with dementia and relatives, or simply someone who has done great things but may not have had the recognition they deserve.

AWARD ENTRIES NOW OPEN #DementiaCareAwards

Outstanding Arts and Creativity in Dementia Care This award will be made to an organisation, collaboration or person that has developed and delivered an outstanding creative arts project, in any setting, to improve the quality of lives of people living with dementia.

Best Dementia Team This award will be made to a dementia-focused team which has developed and maintained an excellent standard of care within any care setting.

Exceptional Contribution by an Informal/Family Carer • NEW FOR 2020 To recognise the valuable contribution of family or informal carers, this award is made by the Journal of Dementia Care to a person, or group of people, to acknowledge the difference they have made. This could be to a person with dementia, to a community or nationally. This award does not require an entry from individuals, however if you would like to nominate someone for the panel to consider please do so along with 500 words to support your nomination.

Best Dementia Friendly Hospital This award will be made to an acute or community hospital which can demonstrate that it has developed outstanding and innovative services for people living with dementia admitted for treatment of medical/surgical conditions.

Dementia Friendly Employer • NEW FOR 2020 This award will be made to an employer that can demonstrate they have developed an open and supportive working culture that values everyone and who flexibly support and enable staff affected by dementia.

Exceptional Contribution by a Person/People Living with Dementia This award is made by the Journal of Dementia Care to a person, or group of people, living with dementia who live and work with incredible passion and commitment to improve the lives and wellbeing of others living with dementia, and who inspire so many within the dementia community. This award does not require an entry from individuals, however if you would like to nominate someone for the panel to consider please do so along with 500 words to support your nomination.

Best Dementia Care Home This award will be made to a care home with more than 50% of residents living with dementia which provides an outstanding environment with exceptional standards of care and support for people with dementia as well as relatives and staff, and is a well-respected place in the local community.

Deadline for entries: Friday 17th July 2020

careinfo.org/awards

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Towards a consistent service for everyone with dementia hen Kate Lee was appointed chief executive of Alzheimer’s Society, the UK’s largest dementia charity, it had an annual income of well over £100 million to fund research, campaigns and more than 3,000 services including dementia cafes, advisers, support workers and its famous Singing for the Brain sessions. Barely had she set foot in her new office when the coronavirus lockdown began, leaving an enormous dent in the charity’s income and its ability to support the people with dementia who most need it.

An emergency appeal and putting 20% of staff on furlough or reduced hours will have helped to cover some of these losses, but the consequences of Covid-19 for Alzheimer’s Society and those it serves are likely to extend well beyond the pandemic to frame Lee’s entire tenure in a way she could never have imagined.

“Given the impact of coronavirus, there are going to be some very tight years,” she told JDC when we interviewed her in early May. “We’ve already lost £7.5 million and if the lockdown goes on for 12 weeks we’re forecast to lose £30 million. If there are no public participation fundraising events for the rest of the year, the impact on us will be absolutely huge.”

But Lee, whose “strong leadership style, engaging use of social media and fearless ability to make difficult decisions” were commended when she was named Charity Principal of the Year at the Charity Times Awards 2019, remains remarkably upbeat.

She describes herself as “chief cheerleader” for the Society and says the pandemic “hasn’t held me back”.

The qualities she brought to

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14 The Journal of Dementia Care

Alzheimer’s Society’s new CEO Kate Lee faces hard decisions as the charity recovers from the pandemic. She talks to Mark Ivory about the challenges – and opportunities – ahead her last role as CEO of children’s cancer charity CLIC Sargent, where she won the award, will be essential in her new role. She admits that she is “still wrestling” with leaving her old job – the emotional connection she feels to it remains evident – as much as with embedding herself in the new one. At CLIC Sargent she gained a reputation for honesty and transparency, and a frank approach to problems that was reflected in the title of her last annual report, The Good, The Bad and The Ugly.

A long, hard look “We will have to look long and hard at what we do,” Lee says.

“My sense is that Alzheimer’s Society has done a great job supporting people with dementia on a number of different fronts, but in much leaner times we can’t be everything to everybody. How can we focus and do less, but add value by doing what nobody else can do and probably reach more people at the same time?”

She concedes that there will be tough messages for her 2,500-strong workforce when the crisis is over and promises to explain them as part of an “open and honest” conversation. “We need to find that sweet spot between cutting deeply to ensure the organisation survives but not cutting so deeply that what survives is irreparably damaged,” she says.

Lee insists that part of the answer is doing what the

July/August 2020 Vol 28 No 4

Society does well more consistently. For all its successes CLIC Sargent once let itself down by failing to think clearly about how it could do well for all children with cancer, not just the two-thirds it was already reaching. It is a mistake she does not want to repeat.

“Are we for everybody with dementia? Well, let’s agree to go for it and ensure that services can be offered consistently everywhere. We have some islands of really good practice but we’re not consistent. A postcode lottery is not acceptable.”

Much will depend on the decisions that lie ahead because the downturn in Alzheimer’s Society’s fortunes has coincided with peak demand.

Coronavirus hit people with dementia particularly hard, with 95% over 65, many living with underlying health conditions, and the majority relying on a social care system that was already in crisis.

Nearly a quarter of confirmed coronavirus deaths in England and Wales have occurred in care homes and 70% of residents are known to have dementia.

As families struggled to get essential care and the Society’s local support services were forced to close during the lockdown, sign-ups to its online Talking Point community swelled by 600%. And there was a “massive increase” in demand for its Dementia Connect helpline, says Lee, with as many calls in the first week of April as in the whole of January.

“My mum has had dementia for 16 years and went into residential care last year,” Lee adds. “I’ve been quite shocked by the stark differences in funding and commitment between cancer care and dementia care. Our NHS has been rightly applauded but we can all agree that social care is broken, both in terms of the support available at home and in residential care. We don’t as a country view people’s social care needs as on a par with their health needs.

“Our NHS is free at the point of use, so why not have the same principle for social care? I understand the arguments about whether that’s affordable because for a few years we will have a huge debt to repay as a result of the pandemic. But health and social care should be properly integrated and partly that’s about being underpinned by the same principles.”

Campaigning ‘is essential’ In April she signed a joint letter with other care sector and charity leaders urging health secretary Matt Hancock to act on the “devastation” caused in the care system by coronavirus and guarantee supplies of desperately needed personal protective equipment (PPE) as well as priority testing for staff and residents. Although the government responded days later, it was widely seen as too little too late. People felt abandoned, and the letter’s signatories saw fit to remind Hancock that “older people’s lives are not worth less.”

It is one reason why Lee believes Alzheimer’s Society’s campaigning and lobbying “is absolutely essential work” and must be protected.

“I’m a socialist – I’m very driven by principles of fairness and equality. It’s really important to think about what

Kate Lee: career background • Became Alzheimer’s Society CEO in March 2020.

• Joined CLIC Sargent, the UK's largest children's cancer charity, as CEO in 2015. Achievements include successfully lobbying the government to fund the funerals of all children under the age of 18; founding the Children and Young People’s Cancer Coalition, helping unite all charities working in this area to plan, share insight and lobby jointly; and winning a £15m partnership with Morrisons.

• Earlier roles include CEO of the Myton Hospice Group, providing palliative care across Coventry and Warwickshire, and leading UK service delivery at the British Red Cross before becoming director of UK and international strategy and deputy CEO. • Lee says she is well connected throughout the voluntary sector and enjoys acting as a “switch” connecting people across the sector.

She has an MBA and has attended Harvard to learn how to “measure things that don’t want to be measured – such as impact!”

• She won the 2019 Charity Times Award for Best Charity Principal and Third Sector 2019 Award for Best Impact Reporting.

• She lives in Coventry with her husband and two children.

• Lee describes herself as having an informal and people-centred style; she values the concept of lifelong learning and as such enjoys meeting people and organisations that challenge her.

• She can be followed on Twitter at @kateleeCEO. makes for a good society as a whole rather than one dominated by individualism and the economy.

“The comments I saw on social media when the pandemic began, that if it’s just older people that die maybe it’s right for our society, those things were horrific.”

While Lee scarcely had time to meet her new workforce before the shutters came down, she held Monday morning briefings via Zoom throughout the lockdown which were joined by between 600 and 1400 staff.

Colleagues in different places used the chatbox function to shout out to each other – all “very good fun,” she says.

When it reported in May, an investigation by the Charity Commission found no evidence to substantiate allegations about the handling of bullying and harassment claims under her predecessor Jeremy Hughes.

But Lee is not complacent about the findings. “There is always more to be done in terms of listening to staff,” she says, and a review of the Society’s

procedures for those who raise concerns has been welcomed by the commission.

Technology: the way ahead If any good can possibly come out of coronavirus, Lee sees technological innovation as a contender. When Alzheimer’s Society ran a live Singing for the Brain session on Facebook in April, starring actress Vicky McClure, 23,000 people tuned in at some point and there had been 210,000 views worldwide since the broadcast. People with dementia are starting to use Zoom too.“People are saying why don’t we keep our virtual Singing for the Brain sessions going, so why don’t we?” she says. “It’s an incredible offer and we’re getting better at it each time we do it.”

As Lee recognises, the voluntary sector will be changed forever by the pandemic. Technology will doubtless be one solution among many as she reshapes Alzheimer’s Society for a postcoronavirus world that will look very different from the old. n

hat difference does coronavirus make for the future prospects of people affected by dementia and the care, support and research they depend on? I know personally as well as professionally the worry created by current uncertainties, living with my mother-in-law whose dementia has advanced significantly as a consequence of the disorientation and isolation created by lockdown.

Are there reasons to feel positive about the future?

What we know in dementia is that we can make things happen! When I joined Alzheimer’s Society as chief executive, the 2009 Dementia Strategy had just been published for England, one of the first countries in the world to have such a comprehensive plan, and 17 key objectives were set out from prevention to end of life care. Partners were identified in health, care, wider society and in research.

Prime Minister David Cameron provided a further boost with his “Dementia Challenge 2020”, issued in 2012.

In 2013 he hosted a G8 Dementia Summit, demonstrating international leadership. Much was achieved over the years and, in 2016, the 2020 Challenge was updated.

One particularly encouraging development was much greater emphasis on co-production with people with dementia and family caregivers. There has been a blossoming of new organisations including DEEP, tide and the 3 Nations Dementia Working Group.

Review panels of service users in Alzheimer’s Society became key drivers of improvement.

But a stronger “user voice” highlighted how in some areas only limited progress had been made. Most notably, people with dementia remained disadvantaged compared with those with other diseases like diabetes, cancer or heart disease: they rely on support from a grossly underfunded social care

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n Jeremy Hughes is vice-chair of the World Dementia Council and former CEO of Alzheimer's Society

16 The Journal of Dementia Care

Reasons for hope in the post-Covid 2020s Despite the grim consequences of Covid-19 for our personal and economic health, there are reasons for optimism. Jeremy Hughes argues that it could galvanise change in dementia care system rather than the (relatively well) funded NHS. Over the past year the Department of Health and Social Care led a review of the 2020 ambitions to see how well we had done. Critically, it set to work on a new strategy to run to 2025, dovetailing with the goals set at the G8 Summit and encapsulated in the World Health Organisation’s Dementia Action Plan.

Progress was assessed against four themes: risk reduction; health and care; awareness and social action; and research and funding. Reflecting how much has changed across the health and care landscape since 2009, I was asked to chair an additional working group on technology.

All was ready for ministerial review in early 2020.

And then came coronavirus.

We are some way from assessing the long-term impact of Covid-19. There will undoubtedly be an economic recession, probably at a scale not seen for a century. Resources for public spending will be tight, but the global challenge of dementia remains.

Despite the challenging economic background, I believe that in five respects there could be reason for optimism about what can be achieved in the next few years: the positioning of social care; interest in information and science; volunteering and community action; technology supported care; and accelerated research.

investment. Politicians were not seeing it sufficiently as an issue in their mailbags. But this was beginning to change, for example through the Daily Mail’s high profile campaign last summer which culminated in my taking Dame Barbara Windsor to meet the then new Prime Minister Boris Johnson.

He got the message then that it was only partly about funding. It was also about quality and the use of hospitals as default care homes. A telling moment was when he turned to officials and said we must do something about this.

“Doing something” is now publicly understood thanks to the impact of coronavirus on care homes in particular.

The relationship between the NHS and social care is firmly on the agenda. There is the opportunity for the new “Integrated Care Systems” to be real partnerships rather than just driven by the NHS agenda. Some pioneering work with places as far apart as Dorset and Norfolk will be good early indicators of what can be achieved.

Science and health Public interest in science and health information has reached unprecedented levels. Switching off the science bit of the TV news isn’t possible as it would often mean switching off the whole programme. The opportunity is to build on this interest with more coverage of the nature of dementia and treatment options.

Social care Despite repeated reports, commissions and parliamentary debates, we were making little progress on social care

July/August 2020 Vol 28 No 4

Community action There is a more open door to get across the scale of the dementia challenge today and how it will

increase in years to come. New approaches to dementia support, including online, are now newsworthy.

Within days 750,000 people signed up to become “NHS Volunteer Responders”. The daily number of contacts these volunteers make to the most vulnerable exceed the total visits of Uber and Deliveroo combined. In many communities across our nations there are new expressions of support and solidarity.

The last time such a single event spurred such shared national commitment was the 2012 Olympics. Over 240,000 applied to become “Games Makers” volunteers. The sadness is that much of that spirit quickly dissipated, but the same should not be allowed to happen now. With the achievement of over three million Dementia Friends and over 400 Dementia Friendly Community Programmes, we are well placed to provide the opportunity for continued volunteering and communitybased activity after Covid.

We can and should adjust our approaches to the “new normal”. Many, like me, have become Dementia Friends “virtual champions”, trained to run online awareness sessions.

Many companies have (re)discovered that being community-minded is good for

business and could apply that learning in becoming “dementia friendly”. This includes less pressured retail environments and enhanced online services.

Technology-supported care Driven by necessity, both patients and clinicians have found ways of delivering more care and support remotely.

Could we see the end of lengthy journeys to hospital appointments and often even longer languishing in outpatients waiting rooms? The disorientation and distress that people with dementia and their family caregivers can feel when going to cllinic appointments is well known.

Indeed, the rarefied atmosphere of the consultation room can inhibit the best assessment of need, so it can work for all to have greater use of online consultation, including for the routine monitoring of health. This could transform the support of people with dementia, most of whom live with at least one other health condition.

It has been suggested that even initial diagnosis of dementia can be done online, which particularly could transform access for people in low and middle income countries. While there is an opportunity, two caveats are important. First, people must be comfortable with and technically supported in holding online consultations (see below). Second, face-to-face must not be totally replaced.

Human contact should remain the bedrock of good dementia care and support.

The use of technology to enhance home support extends beyond clinical appointments.

Even before coronavirus, many people with dementia were isolated in their own homes or indeed, for some, in their own room in a care home. Our forced change has meant delivering previously group activities through home-based participation. A good example is Singing for the Brain.

Family get-togethers on Zoom or Skype have become the norm, often building more

connectivity than was previously happening between a person with dementia and loved ones many miles away.

Dementia support could be built into the functionality of the “smart home”. However, the right technology must be made widely available and support on its use provided, perhaps by a volunteer. Without this in place, we run the risk of creating a marginalised unconnected underclass.

Accelerated research The 2025 goals set by the G8 Summit include a “disease modifying intervention”.

Research progress is being made but sometimes feels pitifully slow. A final lesson from coronavirus is that we can do research more quickly, but care must be taken to ensure that risks are not created or increased. Two immediate opportunities for dementia research are, first, that ethics approval for a new research programme need not take 6-9 months, and, second, that crossorganisational and international collaboration is possible, including a global approach to research trial participation.

Ending on the opportunities for research brings me back to the start. There are indeed some good opportunities for significant advances on dementia post-covid. But it will be in the context of a global recession and there will be significant restrictions on public, voluntary sector and research spend. There will rightly be a great emphasis on Covid-19 and our preparedness for the next pandemic.

So, we will have to fight hard to get the resources to capitalise on the dementia opportunities.

We must be loud about the fact that dementia is a creeping global pandemic that can and will damage national economies as well as individual families unless more action is taken. The achievements of the past decade show we can drive forward improvements in dementia care and support faster than most would have anticipated. We can now do so in the post-covid 2020s. n

PERSPECTIVES A disturbing undertow in our national culture that suggests older people’s lives are somehow less valuable n Mark Ivory is editor of the Journal of

By Mark Ivory

Dementia Care It is not uncommon to hear it said that social attitudes will shift as a result of coronavirus. Just as the sacrifices of the second world war led to a fundamental reset with the introduction of a universal health and welfare system, so the heavy loss of life in specific groups during the pandemic may lead to a radical rethink of policy.

Older people with dementia are one such group. They are perhaps the group worst hit by Covid-19: at the time of writing, there had been just over 40,000 deaths from coronavirus and people with dementia accounted for a quarter of them. But that is only half of the story.

As Alzheimer’s Society has pointed out, enforced isolation and lack of social contact with family and friends are also taking a toll. Deaths from dementia, as opposed to the virus itself, ran at 83% above the long-term average in England during April and this was paralleled by a marked increase across the UK as a whole. In a survey of 128 care homes by the charity, 79% reported that lack of social contact was causing a deterioration in the health and wellbeing of residents.

In her interview with JDC in this issue, the Society’s new chief executive Kate Lee stresses her commitment to fairness and equality and talks about how older people have been let down by a “broken” social care system. Well-publicised problems in the sector with personal protective equipment and testing have only reinforced the impression that people relying on social care are regarded as second class citizens.

“The comments I saw on social media when the pandemic began, that if it’s just older people that die maybe it’s right for our society, those things were horrific,” Lee says in the interview. In a letter sent to health secretary Matt Hancock in April, Lee and other charity heads saw fit to remind him that “older people’s lives are not worth less”. They were picking up on a disturbing undertow in our national culture that suggests older people’s lives are somehow less valuable than those of younger, “more productive” members of society.

As the furious worldwide response to the killing of George Floyd in America has shown, racism is still rife. So is ageism. It is there in the very language we speak, as an excellent recent report from the Centre for Ageing Better (CAB) titled Doddery but dear? argues. Metaphors such as “grey tsunami”, “demographic cliff” and “demographic timebomb” invite us to see old age as a social emergency rather than a stage of life from which anything positive might come.

Steps must be taken to maintain the health and wellbeing of people with dementia as we emerge from lockdown, among other things balancing infection control with social contact. But we will also need to think imaginatively about how to change perceptions of old age more generally. If there can be one social good from coronavirus, this might be it.

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July/August 2020 The Journal of Dementia Care 17

Coping with the Covid-19 situation when you’re living with dementia Unsurprisingly, coronavirus has presented massive challenges for many people with dementia. Philly Hare gathered together some of the thoughts and feelings they have been sharing in cyberspace oronavirus “lockdown” may well have been eased, but in some ways life is the same. People with dementia are still socially distancing and they – like all of us – have been much affected by the experiences they have been through.

So what have we been learning from them over this difficult and unprecedented period? People with dementia have been talking openly in media like blogs, Dementia Diaries and Zoom meetings, giving us an amazing insight into their lived experience.

Using these various sources, I have drawn together some of their reflections.

First of all, it’s clear (and hardly surprising) that the lockdown has been a massive challenge to most. More than one person compared it to “having dementia all over again”. Agnes Houston explains: It seems like forever, because I’ve been living in a different reality and I’m trying to get my bearings and understand it. I never know what day it is, I’m being more forgetful, from forgetting to turn my calendar over and using the tips and strategies… They no longer work now and I don’t understand why… It’s like… when you blow bubbles.

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make things better for yourself sometimes, especially when you have a bit of a dip, because nothing seems to motivate you then.

Steve Tamblin also saw the lockdown as tough emotionally: It’s just being home and being vulnerable I guess. Can’t go out, can’t go anywhere, depression’s raised its ugly head again.

Lorraine Brown, on the other hand, emphasised how she really missed social contact: I feel totally on my own now ’cos I live alone and it’s not an experience that I really like or appreciate… I miss, miss the contact with people desperately…

Hugging my children and my grandchildren and giving them a kiss and coming in for a coffee.

And the things that you really do take for granted that make your day. And at times I am struggling with this.

This yearning for social contact is something that Agnes Houston has considered as well. She describes it as “skin hunger”.

Resilience and leadership

Peter Berry agrees that he has found it very difficult to absorb all the information about the crisis, while Chris Maddocks saw the lockdown as almost like a bereavement: It is difficult to know how to

At the same time, people with dementia have shown fantastic resilience, and, yes, leadership in their responses to the lockdown. They are often very used to having to adapt! As Jacqui Bingham points out: People with dementia are some of the best mindfulness teachers, since they are living in the moment like no one else.

n Philly Hare is co-director at Innovations in Dementia

Keith Oliver keeps a diary, which helps to maintain a

18 The Journal of Dementia Care July/August 2020 Vol 28 No 4

routine and lends a structure to the day: I keep a diary every day, I keep a record, I keep a routine established. This helps enormously in enabling the days to pass and to pass quite quickly, to pass quite positively and then tick things off as they’re done.

Agnes Houston is putting various strategies in place, including “trying to become not a human-doing, but a human-being”. She has also changed the words she uses to describe the current situation: I have a thing “I’m Locked Down, I’m in prison, I can’t get out”. And then my daughter changed it round and she said, “Mum, let’s put a positive spin on this. You’re sheltering from the C Storm, you’re self-sheltering from this virus.” So I’m indoors and I’m sheltering from the storm.

And Wendy Mitchell is drawing on the reserves she has built up over a lifetime: My glass half full personality looks for the positives to survive, whereas glass half empty folk find that so difficult and are immersed in the sadness. I wish I could give them some of my excess sparkle, some of my excess smiles… I must really annoy them…

Dementia once more has unwittingly given me a chance to forget the tragedy that’s around us. I’m sure it would be furious to know that the bubble of happiness I can enter is giving me a way to survive these times…

Many have been finding comfort and positivity in the world of nature and their gardens. Mhari McLintock has been digging and has noticed “lots of bees, absolutely

millions of lovely, lovely bees, lots of birds… and yes all seems to be OK.” Keith Oliver has enjoyed sowing seeds and sitting outside in the sunshine, pointing out that “no matter how big or small a garden one has, one can sow a few seeds in pots and get some great pleasure from them.”

Joy Watson, on the other hand, expresses a willingness to let nature take its course: “I’m even tolerating the birds eating my newly planted flowers and my pet tortoise trampling over the plants the birds have ignored.”

Wendy Mitchell has been doing much more walking than usual, and exploring new parts of her local surroundings. Like others, she has found that... ... this lockdown has reduced traffic fumes, reduced pollution like we’ve never known it, allowing nature and the world to breathe once more. So maybe now, amidst all this trauma, we have to learn to slow down and appreciate what we have around us, whatever that may be…

Ronald Amanze takes a similar view and ponders: I used to wonder where have all the birds gone. As I rarely saw and never heard them, I now know they were just stifled and crowded out by the traffic and people. All day long now I hear birds singing.

Other people have found new joy in indoor activities.

For example, Martin Robertson has kept busy with books and virtual games: …we’re really thrashing

Clockwise from top left: Agnes Houston, Chris Maddocks, Chris Norris, Dory Davies, George Rook, Glenda Roberts, Jacqui Bingham, Keith Oliver, Lorraine Brown, Martin Robertson, Peter Berry, Raymond Waddington, Ronald Amanze, Stephen Tamlin, Tracey Shorthouse, Wendy Mitchell

Amazon Prime, finishing my 10 library books, (I hope there’s no fees as I would be bankrupt), and worst of all enjoy playing games on my iPad, definitely not educational ones either… some thinking required and yes some shooting. Definitely not educational!

Staying connected Finding ways to stay connected with our communities of interest has been very important. Mhari McLintock has really enjoyed a virtual sing-along with other members of her church – and also joining the Women’s Breakfast Chat by Zoom.

Agnes Houston has also found a way of continuing to worship: “I was in the virtual Mass at ten o’clock this morning… it uplifted me and it made me feel really, really good…” And Chris Norris has been joining the Thursday evening “clap for carers”, playing “For He’s a Jolly Good Fellow” on his tenor horn to his neighbours.

For some, this pause from their activism work is a huge relief. Tracey Shorthouse is a bit of a “home bod” anyway: Most of the time people don’t realise even just travelling, using public transport, gives me anxiety for going to my meetings… I haven’t had as much anxiety as I usually would do.

George Rook confesses: The world has stopped and I love it… Well, because I am not constantly annoyed about the CCGs and others refusing to either listen, engage or act to

improve dementia services. And planning my strategy. Writing another letter, another FOI. It’s been a pain in my brain for nearly ten years. And now it has gone.

A tinge of guilt But the happiness some are experiencing is tinged with guilt. In her blog, Wendy Mitchell says: I’ve found myself disappearing into my own world, suspended in a bubble of happiness that only a ping from my phone or iPad can burst. A reminder appearing to contact a friend who is struggling, not well, confined to bed and that’s when this guilt appears. The guilt that a moment ago I was happy and unaware…

And George Rook also realises: I am enjoying this silence.

Many are not…they will be alone, staring at walls, unable to get the food they enjoy, wander around, maybe see familiar faces passing their windows. And many will not understand why. They will not remember why.

It is clear how much small acts of kindness have meant to people. Glenda Roberts has appreciated Facebook messages and was also very pleased when her nurse phoned her: I was feeling quite depressed first thing this morning and then the phone rung and it was my nurse Mari, and she just phoned me right at the right moment… she said my speech was better at the end than it was at the beginning of the phone call…

Agnes Houston was bowled over by the sympathetic service she received from Scottish Gas when her boiler broke: Well done the two people who responded to my phone call – totally and utterly amazing – in the middle of this pandemic it was handled beautifully.

And Wendy Mitchell has been posting her photos on the village website: I’m told my photos bring joy, which is why I carry on posting them. Some villagers are unable to get out and they say how it brings the outside world to them.

In response, Wendy adds: People in the village have been so kind in sending me maps of new village walks to trundle along, as long as I post the piccies at the end.

DEEP groups The role that the groups in the DEEP Network play has been of great interest. The smaller, less formal groups do seem more flexible in their approach; for example, Raymond Waddington really values the fact that the two women who run his group phone him regularly. Many of course are well used to using Zoom to connect with each other, so that groups like the ZOOMettes and the Dementia Diarists have hit the ground running.

People with dementia have also been keen to use their knowledge and experience to provide others with support during the crisis. Some have

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contributed to our Coronavirus resources page, including creating tips for volunteers.

For example, Teresa (Dory ) Davies has made a video to help those learning or relearning to knit. Wendy Mitchell held “virtual cuppas” twice a week, which were much valued by those taking part. George Rook has read a Wordsworth poem to comfort other Diarists who have lost friends and family “to lift our spirits”, and records the sounds of the stream and the birds in his garden in the hope they will relax others. And Dreane Williams recorded a beautiful reading of a Yeats poem.

Keeping things light But DEEP members are also devising ways of keeping things light. We have seen the emergence of a competitive spirit – mainly relating to sunflowers and vegetable growing! Many people are also joining in the challenge to make a blanket of knitted squares – and for some, knitting is a long forgotten art!

Wendy Mitchell says: I looked at the wool, looked at the needles and didn’t have a clue where to start, so that’s when You Tube came into action….first showing me how to cast on….playing it over and over for each stitch until I’d got the right number.

Reflecting on the future And finally of course, there are reflections about what the future might hold for all of us

July/August 2020 The Journal of Dementia Care 19

after this time of limbo. It’s been common to hear people say how scared they are of losing the abilities they have – to speak, to socialise, to get out and about.

Glenda Roberts for example, reflects: I’m just worried, will I be able to cope with people when all this is over? Will I be able to go on stage and talk and do the things I usually do? I’m finding my speech is getting difficult because I’m not speaking much to other people…

Wendy Mitchell expresses similar fears in a poem: When this is all over, Will we be able once more To take a simple trip, To walk into a crowded room?

When this is all over, We’ll all need support To discover a new normal, To discover the world once more…

Meanwhile George Rook is thinking through the wider implications of the crisis: It seems to me that we have the real possibility that thinking about economy, entrepreneurship, health provision and government may soon change.

He is hoping for “a new

Jerusalem. A fair, just society, in which we pursue happiness for the many not the few.”

Let’s finish with this beautiful and poignant poem from George: But for now we lie, half awake, half dreaming Waiting to see if our clock is about to stop Waiting for the warming sun to rise on us again Waiting to pass into a new land The same but profoundly different

Sources Dementia Diaries: https://dementiadiaries.org/ tag/coronavirus Wendy Mitchell’s blog: https://whichmeamitoday. wordpress.com/ George Rook’s blog: https://georgerook51. wordpress.com/ Peter Berry’s videos: www.youtube.com/channel/ UCMZ2Z51ATdWO83s8VoEv Mcw Dory’s knitting tips: https://vimeo.com/41055954 9 Ronald Amanze: Twitter @ronaldamanze n

Making our voices heard: campaigning for the rights of marginalised groups Marginalised groups are beginning to make their voices heard as the National Dementia Action Alliance forces the pace. Sarah Tilsed shows how its work is making an impact aws like the Equality Act 2010 exist to protect marginalised groups, but it is only recently that their rights have come to the fore in dementia care. We at the National Dementia Action Alliance (NDAA), a network of nearly 100 health and social care organisations, are committed to

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20 The Journal of Dementia Care July/August 2020 Vol 28 No 4

making this happen as the success of our DementiaFriendly Hospital Charter has shown.

Our most recent campaign was “From Seldom Heard to Seen and Heard”, accompanied by a resource of the same name, which looked at the specific challenges faced by people affected by dementia in marginalised or “seldom heard” groups. In order to gather information for the campaign, the NDAA interviewed experts, spoke with people affected by dementia, and reviewed existing research.

We identified three areas of focus and these were the LGBT+ community, learning disabilities, and the prison population. This research culminated in round-table meetings, where experts and people affected by dementia discussed key issues and formed a set of recommendations. Our aιm was nothing less than to bring them from the margins to centre stage and it included a launch event where people from these groups talked about their experiences and stated what they wanted society to do differently.

Out of our enquiries came recommendations for change,

particularly in relation to postdiagnostic support, which a survey of our membership had shown was one of the key areas they wished NDAA to focus on.

NDAA members include charities, providers, government bodies, among many others, and it exists to share best practice and take action that extends throughout the institutions of our society.

Our starting point is always the voice of people with dementia themselves. For example, our DementiaFriendly Hospital Charter has seen around 95% of English acute trusts signing up and pledging to implement the charter’s principles for better dementia care. We are currently supporting Public Health Wales to roll out the charter in Wales.

Determined spirit We wanted to bring the same determined spirit to our From Seldom Heard to Seen and Heard campaign. Examples of some of the specific issues confronting marginalised groups include trans people reverting to the gender they had before they transitioned, the regimented nature of prison life taking away the person with dementia’s ability to think independently, and someone with a learning disability not fully understanding a diagnosis of dementia and what it would mean for them.

The two main n Sarah Tilsed is campaigns and partnerships manager for the National Dementia Action Alliance

The two main recommendations were simply to provide person-centred care – seeing every individual as a human being, treating them with dignity and respect – and to provide training and awareness-raising for staff recommendations emerging from all marginalised groups were simply to provide personcentred care – seeing every individual as a human being and treating them with dignity and respect – and to provide training and awareness-raising for staff. Staff were not expected to know everything, but if steps were taken to give them accessible information, they would be better able to understand the needs and preoccupations of an LGBT+ person, someone with a learning disability or a prisoner who also happened to have dementia. Everyone has the right to decent care and support, no matter where they reside, regardless of their background or what community they are from.

Our Dementia Statements have always advocated for these rights as reflecting the things that people with dementia and carers have described as essential to their quality of life. First set out 10 years ago, they were refreshed with support from Alzheimer’s Society in 2017 so that the

voices of carers were better represented. The statements derive from rights enshrined in the Equality Act, mental capacity, health and care legislation, and international human rights law.

The statements cover a wide variety of issues, but their essence is that people with dementia should not be treated differently because of their diagnosis. Every statement begins “We have the right to…” and all concern rights that are too often neglected, such as “We have the right to be recognised as who we are” and “We have the right to be accepted and included in our communities.” Like the From Seldom Heard to Seen and Heard campaign, they assert the right to decent care and support for people, no matter where they reside, regardless of their background or what community they are from.

Legal perspective needed It crystallised the need for the NDAA to bring out its latest resource, Dementia Statements: Through a legal lens. Having

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listened to the membership, it was clear that there was a need to consider the statements from a legal perspective and give clear practical advice and guidance on implementation for practitioners. As the standards set out in the Dementia Statements are enshrined in social care and human rights legislation, if care practitioners and service providers fail to uphold them, they are ultimately failing to realise the human rights of people living with dementia and carers.

In the new resource we reference marginalised groups, stating that “people with dementia and carers who have other ‘protected characteristics’ need to have their identity recognised and channels available to enable them to participate in community life.”

These include black, Asian and minority ethnic (BAME) people affected by dementia; LGBT+ people affected by dementia; and people with learning disabilities and dementia.

What both resources – From Seldom Heard to Seen and Heard and Dementia Statements: Through a legal lens – have in common is an emphasis on upholding rights and the focus on better support that necessarily flows from it. Every person is unique and considering each individual’s specific needs and wants is key.

Go to the NDAA website at www.nationaldementiaaction. org.uk and search under the two titles for the resources and further information. n

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‘You’ve become a burden’ – Ron Coleman’s lockdown diary ometimes my period in lockdown seems to have sped by, while at other times it seems to have gone on forever. So, first, here is a reminder from the first instalment of my diary (JDC May/June 2020) of who I am and who is on this lockdown journey with me.

There is my wife Karen who trained as a psychiatric nurse in the long and distant past. She is our resident expert on all things to do with the lockdown and Covid-19; on top of this she has taken sole responsibility for our wellbeing – physical, mental, spiritual and nutritional (more about this later).

Then there is our 17 going on 40-year-old daughter Francesca whom I fondly refer to in my journal as “Scary Daughter”.

Next in line comes the only other male in our house, my dog called “Nor”, who is a twoyear-old Yorkie Poo (I am sure we used to call that breed “Mongrel”).

That just leaves me: my name is Ron and I am almost 62 years of age and for four years I have had a cognitive impairment that affects both my memory, my ability with numbers, my balance and some other bits of my daily functioning.

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Frightening prospect Since going into lockdown in March, the pandemic has affected all of us in diverse and powerful ways. For me, it has manifested itself most noticeably in my reaction to what is happening in care homes. The reason for my reaction is simple: I may find myself a resident of a care home in the future and to be honest the thought of going into one, given what has happened to residents and staff, n Ron Coleman is a Dementia Diarist and lives on the Isle of Lewis

In the second instalment of his diary Ron Coleman describes life under lockdown with his wife Karen, “Scary Daughter” Francesca and “Top Dog” Nor. He worries about “elder cleansing”, but do they? is really frightening to me.

Like many, I watched in great admiration as our country celebrated the achievements of Captain Tom and his 100 laps of his garden in his 100th year. At the same time, I was confused with the contradiction that many of his peers were being killed in the pandemic war. It is really difficult to get your head around it all.

The impact on my family of the care home shambles surprised me initially, with my daughter taking a very matter of fact attitude. Her view was that younger people will be needed when the crisis is over to help rebuild everything, including our economy. Those of us who have cognitive problems or complex physical conditions – or are just too old and are no longer productive – are therefore a burden.

This way of viewing the world, I argued back, could end up with decisions being made on the basis of age, no doubt resulting in what I termed “elder cleansing”. I turned to my wife for much needed support, hoping that she would bring an end to my daughter’s ridiculous conclusion with an effective, sharp, discussionchanging sentence. Instead all I got was “she has a point Ron”.

In my interpretation of it, all I could hear was, “You are not productive anymore, you have become a burden on all the hard-working people in society.” Worst of all, I heard “You will not be missed”. I chose to ignore my wife’s reply

22 The Journal of Dementia Care July/August 2020 Vol 28 No 4

and said to my daughter: “How can you say such things about these people in care homes?”

My daughter looked me straight in the eye and said, “Dad, four years ago, before you started having these problems, you would have come to the same conclusion as I have.” I snapped back, “I would not!” But the saddest thing for me, as I realised after some reflection, is that she was probably right.

At the start of lockdown my daughter was, in my eyes, still a school child. They might say that seven days is a long time in politics but seven weeks in the life of a 17-year-old stuck at home with a 58 year-old mum and a 62 year-old dad must feel like an eternity.

My little girl is almost gone now and, in her place, a young woman is emerging, a woman confident in her opinions and starting to see the possibilities when the lockdown is over and she is free to explore the vastness of what no doubt will be a new world.

Repairing the damage For it is her generation that will inherit the mess we are responsible for causing and I believe her generation will repair the damage. How can I be so confident? Well, for the last 50 days I have talked with my daughter more than I ever did over the previous five years and she has more than held her own in every discussion we have had.

Meanwhile, my wife Karen

has seen the lockdown as an opportunity to reflect on what she is doing with her life. All work has dried up and that means she is busier than ever.

Most mornings begin with a yoga session in our room and just watching the contortions that Karen performs exhausts me. When she finishes, I drop off to sleep while Karen sorts our breakfast.

A lot more happiness After breakfast Karen often goes to our vegetable plot (I say “our” plot, though I think I have seen it twice this year) and spends time there ensuring we are as selfsufficient as possible. She also volunteers twice a week to deliver medication to people’s homes, but add to this her meditation session, walks with the dog, time with me and Francesca, and her various Zoom sessions, she is probably as busy as she has ever been.

Though we have a lot less income, it has been traded in for a lot more happiness.

Finally, what has happened to the other male in the house, my dog Nor? When the lockdown began, he was confused by the fact we were at home all day every day and he never had time to be on his own where he could play at being Top Dog. But, a couple of months later, he was totally socialised into his place within the family. What will happen over the next couple of months, however, only time will tell. n

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Psychosocial support for carers: service evaluation Family carers can experience anxiety and stress in their role but often receive little formal support. Charlotte Dell and Fay Williams conducted research to find out which psychosocial interventions are most helpful here are thought to be some 540,000 family carers of people with dementia in England and they provide approximately £6 billion a year of unpaid care (Elvish et al 2012). The demands of their caregiving role may be such that they experience increased levels of chronic stress, feelings of burden, anxiety (including about developing dementia), depression and physical health issues, and less subjective well-being and self-efficacy.

These effects have been well documented (Alberts et al 2011, Cohen & Eisdorfer 1988, Cooper et al 2007, Etters et al 2008, Ory et al 2000a, Pinquart & Sorenson 2003) and they may be accentuated where dementia care in particular is concerned. Dementia caregivers spend more time caregiving and report greater impact of caring than non-dementia caregivers (Lara-Ruiz et al 2019, Ory et al 2000b). Therefore, support and services need to be tailored to the unique challenges faced by those caring for people living with dementia.

Guidelines from the National Institute for Health and Care Excellence (NICE 2018, p31) state that carers of people with dementia should be offered a “psychoeducation and skills training intervention that includes advice on how to look after their own physical and mental health, and their emotional and spiritual wellbeing” and that “carer interventions are likely to be most effective when provided as group sessions”.

Various psychosocial interventions have been described, including psychoeducation, skills training (problem solving, self-efficacy skills, communication skills and behavioural management), peer support, psychological interventions (emotional support and coping strategies) and a range of multi-component interventions (Chee et al 2007, Livingston et al 2014, Martín-Carrasco et al 2009, Schulz et al 2003, Qui et al 2019).

Multi-component interventions, involving two or more interventions of

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24 The Journal of Dementia Care

the kind listed, may be beneficial for caregiver burden, depression and health and social support when they include a combination of counselling, support groups, education, stress and mood management (Abrahams et al 2018). It is difficult to make meaningful comparisons between interventions due to the varying outcome measures, aims and designs, and there is no one intervention which meets all carers’ needs.

A recent review (Glasby & Thomas 2019) identified four themes in carers’ support needs: emotional (feelings of grief, loss, isolation, frustration, uncertainty, stress, fear about the future, low self-esteem and self-efficacy, helplessness, and feeling overwhelmed (“overwhelm”)); physical wellbeing (sleep disturbance, fatigue and pain); social (as social networks and social activities are compromised); and practical (for a wide range of tasks that carers feel underprepared for).

Common characteristics of interventions were used in the review to identify four main categories of carer support in the literature:

Figure 1: Areas of psychosocial support

July/August 2020

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Charlotte Dell is assistant psychologist and Dr Fay Williams is clinical psychologist, Bromley Memory Service, Oxleas NHS Foundation Trust • support groups (based on a psychoeducational model, encouraging experience and knowledge sharing between peers, often with professional input) • skills-based interventions (providing techniques for wellbeing such as stress management or meditation) • functional support interventions (practical help such as respite and assistive technologies) • activity-based interventions (e.g. art, memory cafes).

This study reports a service evaluation conducted in Bromley Memory Service to explore the psychosocial support needs of carers of people with dementia and which format of interventions is acceptable to carers, including exploration of possible barriers to attending. The service is MSNAP (Memory Service National Accreditation

Programme) accredited and it diagnosed 787 people with dementia in 2018.

Our psychology team contributes to neuropsychological assessment and postdiagnostic support for individuals and their families, and, in keeping with the NICE guidelines (2018), the service offers a group psychosocial carer intervention. But only 5.3% of referrals to the memory service (in 2018) had family carers who were referred to the group and, even then, the proportion of these who went on to attend the group was low at just 28.6% (2018/2019).

Given carers’ experiences of increased depression, anxiety, stress and burden and the reported improvements in carer wellbeing following psychosocial intervention, the present study aimed to answer the following questions: 1. What barriers to participating in psychosocial interventions exist for carers of people living with dementia?

2. What kinds of psychosocial support do these carers think would be helpful and accessible?

Method Participants A self-selected sample was recruited through attendance at two quarterly information workshops on living well with dementia run by the memory service. These are attended by people diagnosed with dementia of any type by the memory service in the preceding three months, and their carers.

We invited carers to register their interest in participating by adding their name to a form. A total of eight carers were recruited to attend a focus group held at the memory service. All were caring for family members with dementia (four for a parent, three for a spouse/partner and one for a sibling); three lived with the person and five lived separately. Three participants had previously attended a carers group with the memory service. .

Design We used a mixed-methods design in which participants completed a questionnaire with both quantitative and qualitative items. They did this before participating in a 90-minute, audiorecorded focus group discussion to gain further qualitative data.

Analysis We transcribed and analysed focus group data and qualitative data from the questionnaire using thematic analysis in line with guidelines (Braun & Clarke 2006).

Transcripts were coded for pertinent features of the data and themes and sub-

Figure 2: Types of psychosocial support

themes were mapped, defined and reviewed against the whole data set.

We also summarised quantitative questionnaire data using descriptive statistics. Participants had been asked to rank areas of psychosocial support in order of perceived importance. We calculated the average importance attributed to each and created a graph to show overall psychosocial support preferences (figure 1).

Results Quantitative data In the average rankings shown in figure 1, lower scores indicate greater helpfulness as an area of psychological support. Carers’ responses suggested a preference for support with the theme of becoming a carer; including aspects of caring like taking on new roles, experiencing grief, changes and losses, and the impact of these on their own emotional wellbeing.

Participants also ranked the type of psychological support they would be most interested in attending, in terms of different ways of delivering therapeutic interventions, with lower scores indicating greater interest (figure 2). They showed a clear preference for attending a small group with other carers, while attending a small group with other carers and people living with dementia came second.

Qualitative data Analysis of qualitative data from the questionnaire highlighted difficulties carers can experience talking openly and honestly in front of family members with dementia, and their concerns about potentially limited interventions due to the cognitive abilities of some of the family members.

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One participant revealed that, following discussion, they had changed their initial preference from “small group with other carers and the person living with dementia” to a “small group with other carers”. This participant’s initial preference had been based on the assumption that attending an intervention together would help the person living with dementia’s experiences of denial.

From the focus groups three themes and 32 subthemes were identified, which will be summarised.

Summary of findings Structure of intervention The first theme was the structure of the intervention, for which there were eight subthemes: • carers seeking support apart from person with dementia • drop-in versus booked in advance • group versus individual intervention • preference for small group of carers • online and written material • formal versus informal support • workshops • frequency of intervention.

Carers perceived individual interventions as offering more individualised support and a space to talk about more personal aspects of caring.

However, there was an overall preference for attending a small group with other carers apart from the person living with dementia. Carers described being interested in attending workshops but emphasised the importance of group discussion as well as presentations.

The importance of having interventions booked in advance was highlighted by‰

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‰ carers to ensure they would attend when they had additional demands placed on their time and when they felt busy or unmotivated.

While carers wanted group interventions to be informal and unstructured, they acknowledged the helpfulness of having a facilitator to identify common themes and start discussions. Carers demonstrated a desire for both peer-led informal support and psychologist-led structured support.

Carers preferred monthly or fortnightly sessions over weekly sessions to better fit their busy lifestyles and allow more time for reflecting on what they had learned between sessions. They described how, although written, online and telephone support materials would be well suited to such a lifestyle, there was a risk that they would not be given the priority they deserved.

Content of intervention The second theme we identified was the content of the intervention, which had 12 subthemes: • provision of education and information • managing difficult thoughts and feelings • taking on a carer identity • loss of relationship with the person living with dementia • worry about the future • carers seeking new ways of coping • acceptance • balance between focusing on the present and considering the future • coping with denial • expressing feelings associated with caring • importance of sharing experiences • talking as a helpful release.

Carers described a strong desire for specific information from professionals, early in their dementia journey, about various topics including dementia and its progression. They prioritised this kind of support over their own support needs.

They also wanted to talk with other carers to share their experiences, seek reassurance and empathy from those in similar situations, gain support with decision-making and have the opportunity to unburden without looking for help to fix their problems.

Feelings of anxiety and frustration were expressed at the uncertainty of dementia and its progression, as well as anger about the loss of a preconceived future, lowness of mood and guilt about previous behaviour towards the cared-for person following diagnosis.

They described feelings of being taken advantage of, resentment and feeling

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Services should take responsibility for making information about what they have to offer clear, with a single point of reference or contact where possible, so that carers feel less overwhelmed and confused following diagnosis overwhelmed. Carers expressed a need to learn ways to manage difficult thoughts and feelings as well as a need to learn new coping and problem-solving skills. They felt that this would help them to feel more accepting and more able to manage denial of the kind that people with dementia may experience.

Carers discussed taking on a new “carer” identity and talked about the gradual loss of the person with dementia as being difficult. This new identity could be accompanied by feelings of confusion and being overwhelmed as carers tried to make sense of all the new information they had to learn. The implication was that a single point of reference would be helpful.

There were also feelings of being worried and unprepared for the future.

Although carers were aware of the unpredictability and varied nature of living with dementia in the future, restricting what professionals could tell them, they expressed a need to know what potential outcomes there might be, including information about the end stages of dementia. Some carers discussed the helpfulness of focussing on the present day rather than worrying about the future.

Engaging with interventions Factors affecting engagement with interventions were the third theme, which again had 12 subthemes: • responsibility for the wellbeing of the person with dementia • ambiguity of prioritisation of own needs • impact of needs on the ability of the person with dementia to access intervention • impact of multiple caring responsibilities • responsibility within the family system • assumptions about psychosocial support • changing needs and timing of support in the dementia journey • stress is out of control • relationship to services • is dementia a secret?

• anxiety about developing dementia • impact of individual needs on carers’ ability to access intervention.

Carers described how their perceived

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responsibility for the family member’s physical and emotional wellbeing created practical barriers to accessing interventions.

It could mean finding someone to stay with their family member with dementia and, where it was possible to leave them alone, carers often felt pressure to return home as soon as possible.

While they demonstrated an awareness that caring for themselves and feeling well helped them to be better carers, they often did not prioritise their own needs. They cited time restrictions as a barrier to accessing support, but also expressed beliefs that prevented them from seeking support.

Among these beliefs was the view that other people’s happiness and needs were more important than their own and that they would be a nuisance if they asked for help. Some carers described self-care activities such as mindfulness as indulgent, while others said that they had caring responsibilities for other family members which affected their ability to take up offers of support.

Feeling under pressure from other members of the family was also a factor as they tried to meet their own expectations of caring for the person with dementia; some remarked on a lack of support from family networks when the responsibility for caring was not shared equally.

Carers held assumptions about psychosocial support that may have influenced their motivation to attend interventions, such as assuming that they would have to bring lots of things to talk about to a group, perceiving psychologists as fixing problems when they did not see themselves as needing solutions, and being uncertain about the role of psychologists. Some carers perceived stress and their ability to cope with it as “out of their control”.

The gradual nature of the progression of dementia made it harder for carers to identify their need for support, especially as support was often offered in the early stages. Stigma and secrecy surrounding dementia gave rise to a challenge for carers in explaining their own attendance at services when the cared-for person was unable to remember their diagnosis.

Carers could feel deceitful in this situation.

Discussion Our evaluation explored the views of carers of people with dementia to learn more about the types of psychosocial support they believed to be helpful and the barriers they perceived to accessing that support. They indicated that support with the idea of becoming a carer (grief, loss, change) would be most helpful and also wanted to learn coping skills and ways to manage difficult thoughts and feelings.

Findings suggest that carers prioritise support that allows them to express themselves through talking in order to unburden and empathise, gain reassurance and share experiences with others in a similar situation. When thinking about accessing services, carers stressed the continuing need for provision of information about dementia, including its progression.

This desire for information was influenced by carers’ need to reduce anxiety about the uncertainty of the future, although there was some ambiguity between the identified and expressed psychological needs of carers and the types of interventions they prioritised attending.

In many cases self-care could be a valuable intervention, but our findings suggest a reluctance to spend pressured time on this kind of help. Instead, interventions perceived to overtly enhance abilities to care, such as education, information and advice, were given a higher priority than those that enhanced wellbeing.

Service implications While responses varied, the most popular structure for interventions was to meet as a small group of carers, booking in advance and coming together fortnightly or monthly. Carers preferred an unstructured and informal approach to meetings, but with some psychological input and a facilitator.

Our findings suggest services should take responsibility for making information about what they have to offer clear, opting for a single point of reference or contact where possible, so that carers feel less overwhelmed and confused following diagnosis. Given that carers did not always understand their own needs or how services could help, communications with them should focus on helping them find out.

Services may need to acknowledge the challenges carers face in attending support, such as feelings of guilt or deceit when the person they care for is in denial.

It may be that carers need support to discover ways of leaving the person safely

Key points for practice • Family carers want support with the idea of becoming the carer of a family member with dementia • Carers could experience grief and loss, for which they wanted to learn coping skills • Carers particularly value support which allows them to talk about their experiences and express themselves • Provision of information about dementia and its progresion is important to carers • Education, information and advice were preferred rather than interventions enhancing wellbeing • Carers wanted to meet regularly in small carer-only groups booked in advance at home alone or with finding friends or family or professional services to provide the necessary care while they attend.

It may also be helpful if services consider the timing of their offers of support to carers, waiting until later in the dementia journey. Carers who are not ready to access support initially may well become so as the condition progresses.

We believe that there are significant lessons from this study, although it is important to be clear about its limitations such as the small sample size. Our sample was also drawn from carers who attended a memory service workshop so already had an interest in attending interventions. Their responses to questions may have been influenced, in some cases, by previous attendance at a carers group offered by the memory service facilitated by a member of the psychology staff.

But our analysis of the data suggests that participants did feel able to openly share both positive and more negative views. We are now looking at possibilities for future service evaluation, such as exploring carers’ views by routinely administering a questionnaire to those attending the clinic.

New kinds of carer group support are expected to be piloted, based on our findings, and once again we will ask for carers’ feedback and examine the implications for our service as it evolves. n References Abrahams R, Liu K, Bissett M, Fahey P et al (2018) Effectiveness of interventions for co-residing family caregivers of people with dementia: Systematic review and meta-analysis. Australian Occupational Therapy Journal 65(3) 208-224.

Alberts N, Hadjistavropoulos H, Pugh N, Shannon L (2011) Dementia anxiety among older adult caregivers: An exploratory study of older adult

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caregivers in Canada. International Psychogeriatrics 23(6) 880-6.

Braun V, Clarke V (2006) Using thematic analysis in psychology. Qualitative research in Psychology 3(2) 77-101.

Chee Y, Gitlin L, Dennis M, Hauck W (2007) Predictors of adherence to a skill-building intervention in dementia caregivers. Journals of Gerontology: Series A 62(6) 673-678.

Cohen D, Eisdorfer C (1988) Depression in Family Members Caring for a Relative with Alzheimer’s Disease. Journal of the Geriatrics Society 36(10) 885-889.

Cooper C, Balamurali T, Livingston G (2007) A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia.

International Psychogeriatrics 19(2) 175-195.

Elvish R, Lever S, Johnstone J, Cawley R, Keady J (2012) Psychological interventions for carers of people with dementia: a systematic review of quantitative and qualitative evidence. Lutterworth: British Association for Counselling & Psychotherapy.

Etters L, Goodall D, Harrison B (2008) Caregiver burden among dementia patient caregivers: A review of the literature. Journal of the American Academy of Nurse Practitioners 20(8) 423-428.

Glasby J, Thomas S (2019) Understanding and responding to the needs of the carers of people with dementia in the UK, the US and beyond. University of Birmingham, available at https://lx.iriss.org.uk/sites/default/files/carers-ofpeople-with-dementia.pdf Lara-Ruiz J, Kauzor K, Gonzales K, Nakhla M et al (2019) The functional ability of MCI and Alzheimer’s patients predicts caregiver burden. Journal of Gerontopsychology and Geriatric Psychiatry 32(1) 31-39.

Livingston G, Barber J, Rapaport P, Knapp M et al (2014) START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of carers of people with dementia. Health Technology Assessment 18(61) 1242.

Martín-Carrasco M, Franço M, Valero P, Millán P (2009) Effectiveness of a psychoeducation intervention program in the reduction of caregiver burden in Alzheimer’s disease patients’ caregivers.

International Journal of Geriatric Psychiatry 24(5) 489-499.

National Institute for Health and Care Excellence (NICE) (2018) Dementia: assessment, management and support for people living with dementia and their carers. London: NICE. Ory M, Hoffman R, Yee J, Tennstedt S, Shultz R (2000a) Prevalence and impact of caregiving: a detailed comparison between dementia and nondementia caregivers. Gerontologist 39(2) 177-85.

Ory M, Yee JL, Tennstedt SL, Schulz R (2000b) The extent and impact of dementia care: Unique challenges experienced by family caregivers, in R Schulz (ed) Handbook on dementia caregiving: Evidence-based interventions for family caregivers.

New York: Springer Publishing.

Pinquart M, Sörenson S (2003) Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology and Ageing 18(2) 250-67.

Qui D, Hu M, Yu Y, Tang B, Xiao S (2019) Acceptability of psychosocial interventions for dementia caregivers: a systematic review. BMC Psychiatry 19(1) 23.

Schulz R, Burgio L, Burns R, Eisdorfer C et al (2003) Resources for Enhancing Alzheimer’s Caregiver Health (REACH): Overview, Site-Specific Outcomes, and Future Directions. Gerontologist 43(4) 514-520.

July/August 2020 The Journal of Dementia Care 27

AWARD ENTRIES NOW OPEN 27 NOVEMBER 2020 | LONDON

CAREINFO.ORG/AWARDS

QUESTIONS OR QUERIES EVENTS@INVESTORPUBLISHING.CO.UK SPONSORSHIP OPPORTUNITIES CAROLINE.BOWERN@INVESTORPUBLISHING.CO.UK

Carer This award recognises the vital role of the care assistant in providing quality care. Evidence of dedication, sensitive handling of matters of importance to residents, and career progress through training will all be taken into account.

Care Registered Nurse This award will be made to a registered nurse who has made long term care their area of professional specialisation. In addition to maintaining training and demonstrating outstanding clinical and managerial qualities, the winner will have demonstrated a high level of dedication to, and advocacy for, the people they support.

Care Team This award will be made to a staff team who have developed and maintained an outstanding standard of care and team ethos within any care setting.

Care Home Manager This award will be made to an exceptional care home manager (or deputy). They will be expected to demonstrate a high level of expertise in managing the services of the home to the benefit of residents, staff and their local community.

Dementia Care Manager This award will be made to an outstanding manager (or deputy) of a care service where more than 50 per cent of the residents live with dementia. They will be expected to demonstrate a high level of expertise in managing the service to the benefit of residents with dementia as well as staff.

Care Operations / Area Manager The winner of this award will have demonstrated exceptional vision, leadership and be at the forefront of new management techniques. They will have inspired their colleagues to provide exceptional care throughout the homes for which they are responsible.

Care Activities Co-ordinator/Facilitator This award will be made to a person within a care home or day care service who has made an exceptional contribution to the quality of life, health and happiness of all the people they support through the activities they provide.

Care Housekeeper Running the housekeeping services of a care home is vital for the well-being of residents and staff. This award will be made to an outstanding housekeeper who can demonstrate the passion and commitment needed to make a real difference.

Care Chef This award will be made to a chef in a long term care setting who shows exceptional ability in providing well-balanced, nutritious and delicious food.

DEADLINE: FRIDAY 17 JULY 2020 Care Home of the Year This award will be made to a care home with 15 or more residents which can demonstrate exceptional quality care across all the services it offers.

The Dignity & Respect Care Home of the Year This award will be made to an exceptional care home which can convincingly demonstrate that it has put dignity and respect for its residents and staff at the very heart of all it does, and that this emphasis has resulted in tangible benefits for residents, relatives and staff alike.

Care Newcomer NEW AWARD FOR 2020 This award will be made to a person working in care, who is new to the sector over the past 18 months, and who is already delivering the very best standard of care. The judges will be looking for an individual who excels in their personal and team roles, and exhibits enthusiasm, professionalism, confidence and a shining commitment to their on-going career development.

Care Champion This award will go to an exceptional person, whether they are a member of staff, a relative, resident or a volunteer who has gone above and beyond and made a real difference. It could be a charitable achievement or making life better for residents and relatives, or simply someone who has done great things but may not have had the recognition they deserve.

Outstanding Care in a Crisis NEW AWARD FOR 2020 This award will be made to a care home that has demonstrated an outstanding level of care and compassion to their residents during the Covid-19 pandemic.

Care Leadership This award will be made to an outstanding individual, in any care setting, small or large, whose leadership has resulted in an exceptional outcome for clients, team members and the organisation they work for.

Care Home Group This award will go to an outstanding care group with more than three care homes which is able to evidence exceptional client care combined with excellent staff development and impressive financial results.

Lifetime Achievement in Care This award will be made to an exceptional person who has committed a significant portion of their life to working in a care home, or in social care, in the community or in sheltered housing, and has made a substantial difference to the quality of life of the people they have worked with.

Care Personality An independent panel will select 5 finalists who they feel have made a big contribution to the care home sector within the past 12 months. The people chosen will be contacted before the awards ceremony and notified of the finalist position. This award does not require an entry from individuals, however if you would like to nominate someone for the panel to consider please do so along with 500 words to support your nomination.

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Low-investment video and music activities evaluated Can low-cost activities like watching nature videos accompanied by classical music reduce stress and improve care for care home residents? Robert Rados and colleagues report on the findings from their investigation

n Dr Robert Rados is assistant professor for the health care management program, School of Health Sciences, Southern Illinois University Carbondale and principal investigator for this study; Dr Jun Kim is assistant professor, School of Human Sciences, Southern Illinois University Carbondale; Dr Shintaro Kono is assistant professor of kinesiology, sport, and recreation at the University of Alberta, Canada; Dr Namyun Kil is assistant professor for recreation management and therapeutic rec at the University of Wisconsin-La Crosse; Dr Arlene Tan is director of the achieve program at Southern Illinois University Carbondale; Dr Kari Kensinger is the owner of Therapeutic Recreation of Nebraska; Jasmine Cave is instructor in public health and recreations professions, School of Human Sciences, Southern Illinois University Carbondale; and Nicole Schmidt Allen is an activity therapist at Clyde L Choate Mental Health and Development Center in Illinois

30 The Journal of Dementia Care

e wanted to explore the potential of inexpensive activities for care home residents to assist care staff in meeting the needs of people with dementia and mitigating stressful workrelated interactions. These are “lowinvestment activities”, which is to say that they are low-cost, of short duration and require little staff training to implement them. Such activities, integrated into routine care by staff, provide additional opportunities to build a relationship based on knowing and respecting residents’ values and wishes (Long et al 2019, Oppert et al 2018, Scales & Zimmerman 2018).

Music is one of the most studied lowinvestment approaches to improving mood for individuals with dementia (Ijaopo 2017, Olley & Morales 2017, Ray & Gotell 2018). Nature-based lowinvestment approaches like walking in nature, horticulture activities, and viewing simulations of nature (i.e. video or photographs) have also been found to improve mood for residents with dementia (Bossen 2010, Lakhani et al 2019, Moeller et al 2018).

Chung and colleagues (2016) combined nature photographs and music to create a series of 7- to 10-minute slideshow videos to study their effect on 23 nursing home residents with mild to severe dementia.

Each participant viewed one video per day, three days a week, over four weeks.

W

What did we do? Key points • Low-investment activities were studied to find out about their potential to improve mood among care home residents • Our pilot study examined the efficacy of a nature-based video with music intervention with residents • When participants watched the video once, most of them reported positive changes in their tranquillity ratings • Staff noted positive effects on behaviours, mood and sociability • Integrating a low investment activity like the video into care routines, reducing stress among residents, is easy to do

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While quantitative analysis of resident status from nursing records during the viewing period did not show any significant differences from normal, participant comments collected three to 21 days after final viewing suggested the videos were calming, promoting relaxation and a sense of tranquillity.

Kim and colleagues (2017) studied how different types of photographs and music affected perceived tranquillity for 102 non-randomised college students who viewed six different 7 - 8 minute slideshow video combinations of two visual-auditory genres: “pastoral” (nature photographs, peaceful classical music) and “sublime” (urban photographs, aweinspiring classical music).

Students completed a six-item tranquillity scale before and after each viewing, and nature photographs with peaceful classical music gave rise to the highest perceived tranquillity index.

This finding is important because lowinvestment activities of short duration need to utilise an effective combination of elements.

Key objective The objective of this pilot study was to assess the efficacy of a six-minute naturebased video with music intervention in improving the tranquillity of residents living in a dementia care home. We wanted to equip and empower care home workers with an evidence-based lowinvestment activity that, when integrated into routine care, assisted in mitigating work-related stressful interactions with residents with dementia.

Care home workers implemented and participated in measuring the efficacy of the research video intervention with residents they served. It was hypothesised that a positive effect on residents’ selfrated tranquillity levels would occur and that workers’ observations would support these findings.

Method Design Our study used a one-group pre-test/ post-test quasi-experimental design (Riddick & Russell 2015) with mixedmethods data collection. Ten participants living in a dementia care home individ-

ually viewed the research video once and had their perceived tranquillity levels assessed before and after the video using a standardised scale (Kim et al 2017) for self-report participant ratings and care home worker observer ratings of the participant. The scale also allows for descriptive comments.

Participants The Institutional Review Board at the principal investigator’s university approved the research conducted at an American Midwestern dementia care home. A nurse from the care home, with a BSc in nursing, recruited 10 participants (six females, four males) who ranged in age from 71-84. Specific dementia type or other diagnosis were unknown to the researchers.

All participants had a “level I” designation: all exhibited a tendency to walk about and become disoriented, required assistance with everyday basic tasks (e.g. eating, bathing, dressing, toileting, and transferring), required medication administration, needed assistance for activity engagement, and received general monitoring and constant check-ups at a minimum of every two hours. No “level II” residents with more severe dementia symptoms participated.

Hearing and vision acuity were not tested.

Training The principal investigator worked with the care home nurse to carry out the research protocol. Three care home workers (i.e. “care home nursing assistants” or CNAs), who routinely monitored residents, voluntarily agreed to act as “participant observers” and were trained by the nurse to complete the tranquillity index and write observation comments.

Protocol To explore the effect of viewing the research video, each participant’s perceived tranquillity was measured using the standardised scale (Kim et al 2017), which was administered by the nurse before and after the video. In addition, each participant was asked to comment about and rate the video.

One participant at a time individually completed the research procedure (approximately 15 minutes). After getting informed consent, the nurse invited the participant to view the research video by sitting together on two chairs about three feet in front of a flat screen TV in the residents’ lounge without the use of headphones.

Having assisted them to complete the tranquillity scale (i.e. read items aloud) before and after the six-minute video, the

A staff member at Reflections care home in Illinois, where the low-cost intervention was trialled, chats with a resident

nurse then asked the participant to comment on and rate it. No effort was made to ensure that each participant remained engaged in viewing the video.

The research was conducted over different days, during a daily 10am to 12 noon activity period.

Observation assessments To evaluate the effects of viewing the research video from the perspective of a care home worker, one of the trained CNA observers completed a before and after tranquillity scale rating based on their observation of the participant (about one hour before and after the video).

CNAs did not interact with the participant during data collection or use an observation checklist for specific behavioural criteria.

Instruments The second author led on creating the sixminute research video based on Kim et al (2017). Forty “pastoral” professional still nature photographs were included featuring local scenery, flora, and fauna covering four seasons. Photographs were accompanied with “pastoral” classical music (Mozart’s Serenade No 10 in B flat K361 “Gran Partita” III Adagio).

The tranquillity questionnaire for participants was directly adopted from Kim et al and consisted of six items: “I currently feel: (a) calm, (b) relaxed, (c) restful, (d) peaceful, (e) serene, and (f) at ease.” The one completed by CNA observers started with the words “the participant appears to feel,” followed by the six items.

Each item was measured using a 5-point Likert-type scale that ranged from 1 = Disagree to 5 = Agree. Our quantitative data therefore contained four different pieces of information: tranquillity assessed by the resident before the intervention, tranquillity assessed by the resident after the intervention, as well as tranquillity assessed by the care worker observer before and after the intervention.

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Data evaluation Quantitative data and descriptive comments were reviewed. The quantitative analysis looked at the before and after ratings of the residents and CNAs to determine if there was any significant difference in tranquillity level before and after the intervention. The review of descriptive comments consisted of two steps. First, all descriptive comments were entered into a table to compare sources of information (i.e. resident and care home worker) and time points (i.e. before and after the video). Second, each comment was categorised as either positive or negative, following Chung et al (2016), and for patterns across the table.

Results Participant data In terms of quantitative results, eight participants reported positive changes in their tranquillity ratings after the intervention compared with before. Two participants reported no difference.

Participant comments, meanwhile, mostly reflected benefits for residents with dementia who watched the video.

Participants were requested only to comment after viewing the video. Two participants had no comments. Of the eight participant comments, six had favourable responses, using words such as “pretty”, “nice”, “beautiful pictures, God’s country”, “I enjoyed the pictures”, “very good documentary” and “very intelligent movie”.

One participant had a reminiscence response, “Looks like places I have seen before,” and one had a negative remark, “I didn’t need some stupid pictures to cool me off.” Six participants used explicit references to imagery such as “pictures”, “movie”, “places”, and “documentary”, while two mentioned the concept of tranquillity such as feeling “at ease” and “calm”. Music was not mentioned by any participant.

Staff data Care home worker observers’ quantitative results revealed a difference in participants’ perceived tranquillity ratings, which CNAs recorded as higher after the video than before. Staff qualitative comments were also more positive after the video viewing than before.

One CNA noted: “Resident [was] mad at sons for putting him here. He does not stay out in common area except to eat. Mad daily.” The observer noticed changes in the same resident’s behaviours after the intervention: “Resident talked with sons at lunch. Resident stayed out in common area and then went to listen to a band we had that day. Very unusual behavior to

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technique, by validating, redirecting and framing the participant’s thoughts when they were asked how calm, relaxed, restful, peaceful, serene, and at ease they felt.

Most participants rated the video favourably; however, we did not have them separately rate nature photographs and classical music. They did not mention music in their comments. Future research should include a control group and a larger sample size, partly to consider this issue but also to increase the reliability of the overall findings.

Even so, while these provisos should be borne in mind, our pilot study appears to support the hypothesis that a low-investment activity in the form of a six-minute slideshow video with nature photographs and classical music can assist in raising tranquillity levels and improving quality of life among residents with dementia. n

Sample nature pictures used in the intervention, clockwise from top left: Spring orchard.

Summer flowers, Fall road, Winter lake with ducks.

stay in common area or go to a band.”

A similar change in mood and sociability was observed in another participant for whom this note was made before the viewing: “Resident wants to go see her husband who is in the hospital.

She is angry at everyone. Very verbal about making her wishes known.

Threatening to call the cops”. But things changed after the video: “Resident still wants to see her husband but is much sweeter to staff and actually sat down and talked with another resident.”

Two types of effects Our analysis identified two types of effects, involving a change in attitudes and a change in behaviours. Altered attitudes were evident in these CNA notes: “resident came back with a smile on her face and stated I feel okay”, “more calmed down”, “willingness to engage with staff or other residents”, “less agitated”, “reduced anxiety”, “sweeter to staff”, “happier”, “without worrying”, “friendlier”, and “more sociable”.

Positive behaviours after the video included: “less exit seeking”, “relaxing and eating their food”, “sitting vs. having to walk around”, “was able to sleep”, “began participating in activities”, “started interacting with other residents”, and “exhibited unusual desire to stay in the common area and participate in an activity”. A CNA noted that, even in the case of the one participant who commented negatively on the video, “he isn’t yelling now”.

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Discussion The results of this pilot study suggest that our six-minute slideshow video of nature photographs with music intervention can assist in improving levels of tranquillity for care home residents with dementia. Due to our limited number of 10 participants and use of a convenience sample, the qualitative data from our study are perhaps more compelling than the quantitative data.

Most notably, all observers’ comments described calmer residents who were better able to enjoy a good quality of life after the video intervention. Utilising care home workers for the entire research protocol supported the hypothesis that integrating a low-investment activity like a six-minute video into caregiving can be done by them with a view to positive resident outcomes. Workers appeared to be able to observe and assess each of the participants before and after the video intervention without difficulty.

Implementation of the intervention went relatively smoothly and our care home workers indicated they were comfortable participating in the research. It should be noted, though, that we did not control for the influence of person-centred engagement, such as the nurse’s interactions with participants which may have contributed to fulfilling unmet needs.

Being invited to be part of a research study may have added a feeling of being needed, valued and having purpose. Answering questions relating to the tranquillity scale may have acted as a stress reduction

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References Bossen A (2010) The importance of getting back to nature for people with dementia. Journal of Gerontological Nursing 36(2) 17-22.

Chung J, Choi S, Kim J (2016) Experience of media presentations for the alleviation of agitation and emotional distress among dementia patients in a long-term nursing facility. Dementia 15(5) 1021-1033.

Ijaopo E (2017) Dementia-related agitation: A review of non-pharmacological interventions and analysis of risks and benefits of pharmacotherapy. Translational Psychiatry 7(10) 1-11.

Kim J, Kil N, Holland S, Middleton WK (2017) The effect of visual and auditory coherence on perceptions of tranquility after simulated nature experience. Ecopsychology 9(3) 182-189.

Lakhani A, Norwood M, Watling DP, Heidi, Z, Kendall E (2019) Using the natural environment to address the psychosocial impact of neurological disability: A systematic review. Health and Place 55(1) 188-201.

Long EM, Azios JH, Richings, S (2019). Exploring Certified Nurse Aide perspectives on caring for residents with dementia. Annals of Long-Term Care 27(1).

Moeller, C, King N, Burr V, Gibbs GR, Gomersall T (2018) Nature-based interventions in institutional and organizational settings: a scoping review.

International Journal of Environmental Health Research 28(3) 293-305.

Olley R, Morales A (2017) Systematic review of evidence underpinning non-pharmacological therapies in dementia. Australian Health Review 42(4) 361-369.

Oppert ML, O’Keeffe VJ, Duong D (2018) Knowledge, facilitators, and barriers to the practice of person-centered care in aged care workers: A qualitative study. Geriatric Nursing 39 683-688.

Ray KD, Götell E (2018) The use of music and music therapy in ameliorating depression symptoms and improving well-being in nursing home residents with dementia. Frontiers in Medicine 5(10) 287.

Riddick CC, Russell RV (2015) Research methods: How to conduct research in recreation, parks, sport, and tourism (3rd edition). Urbana, IL: Sagamore.

Scales K, Zimmerman S (2018) Evidence-based nonpharmacological practices to address behavioral and psychological symptoms of dementia. The Gerontologist 58(suppl 1) S88-S102.

Determining best interests: the principles explained How should the best interests of a person who lacks capacity be established? In her second contribution to our series on hospital dementia care, Elizabeth Champion sets out good practice in reaching best interests decisions. ne of the key principles of the Mental Capacity Act 2005 (MCA) concerns the best interests of a person assessed as lacking capacity and the question of how to determine what these best interests are.

In my previous article for this series (JDC May/June 2020), I tackled the myth that everyone with dementia lacks capacity. But, when capacity is found to be lacking, it is vital that decision making on the person’s behalf proceeds in the right way.

The Mental Capacity Act code of practice puts it like this: “Any act done for, or any decision made on behalf of a person who lacks capacity must be done, or made, in that person’s best interests” (Department for Constitutional Affairs 2007).

Whoever the individual is that is making the decision or acting on the person’s behalf, whether a family carer, paid care worker, attorney, courtappointed deputy or a healthcare professional, the principle is the same.

It is also the same whether the decision is minor or major, although there are exceptions such as when someone has made an advance decision to refuse treatment.

The “best interests” concept was developed by the courts in cases relating to people who lacked capacity to make specific decisions for themselves, mainly decisions concerned with the provision of medical treatment or social care.

It is not actually defined in the MCA, although there is a section on working out best interests.

In this section, there is a checklist of common factors that must always be considered by anyone who needs to decide what is in the best interests of that person in any particular case.

Responsibility for making the decision falls to the individual referred to as the “decision-maker” and it is their responsibility to work out what would be in the person’s best interests.

Examples of decision-makers are: • the carer most directly involved with the

O

This article (along with part 1, in the last issue) is especially useful for staff training or discussion groups person for day-to-day actions or decisions • a doctor or member of health staff where the decision involves the provision of medical treatment – the person responsible for carrying out the particular treatment is the decision maker.

• a nurse or member of care staff where the decision is about nursing or social care • a person with lasting power of attorney (LPA) where the decision falls within the scope of their authority.

For any given decision, the decisionmaker should not be someone likely to be biased by their own views. For example, it may not be appropriate for a dementia specialist who has been advocating for a person with dementia to be the decisionmaker since they may lack impartiality.

Here, I will look at the kinds of issues covered by the MCA checklist.

Factors to consider Encourage participation Do whatever is possible to encourage the person assessed as lacking capacity to take part in making the decision, considering various forms of communication and accessible information.

Remember that, although a person with dementia may not have the capacity to make a particular decision, they may still understand what is being said and wish to contribute. This may require additional time, but it is time well spent.

Identify circumstances Try to identify all the things that the person themselves would take into account which are most relevant to that particular decision, for example, what you know about and what it is reasonable to regard as relevant. Remember that relevant circumstances will vary from case to case and person to person.

Elizabeth Champion is lead nurse for dementia care at Maidstone & Tunbridge Wells NHS Trust Find out views What are the person’s past and present wishes and feelings? These may have been expressed verbally, in writing or through behaviour or habits. They include any beliefs and values (religious, cultural, moral or political) that would be likely to influence the decision.

Remember that these views will not necessarily be the deciding factor. A best interests assessment must consider them, but the final decision must be based entirely on what is in the person’s best interests. Other factors might include the effect of the decision on other people and what the person would have considered in these circumstances.

It is also important to consider whether the person’s actions in relation to particular things have changed since they have had their diagnosis, as this may mean their views have changed too. For example, someone who was a strict vegetarian prior to dementia may now eat meat. Or someone who used to be adamant that they would not want to go into a care home may now feel more secure in that environment than they do at home.

Avoid discrimination Assumptions should not be made simply on the basis of age, appearance, condition or behaviour.

Remember that a person with dementia who lacks capacity did not always lack capacity and therefore should not be discriminated against owing to their condition, behaviour or diminishing abilities.

Regaining capacity Assess whether the person might regain capacity. If, after medical treatment, someone is likely to regain capacity, can the decision wait until afterwards?

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Consider all factors Take all of the points above into account, weighing up all factors in order to work out a person’s best interests. This is not a simple process but ensure that you follow it before reaching a decision.

Don’t take shortcuts in working out best interests; a proper and objective assessment must be carried out on every occasion. And what is in the person’s best interests may well change over time. For this reason, even if similar actions need to be taken repeatedly in connection with the person’s care or treatment, their best interests should be regularly reviewed.

Documentation

Remember that people with dementia can also have medical problems that may affect their capacity, e.g. delirium. If one of these is present they should receive treatment for it, when possible prior to the decision being made in their best interests .

Life-sustaining treatment If the decision concerns life-sustaining treatment, assumptions should not be made about the person’s quality of life nor be motivated by a desire to bring about the person’s death.

Remember, life-sustaining treatment depends not only on the type of treatment, but also the circumstances in which it is prescribed. In some situations, for example, antibiotics may be lifesustaining, whereas in others they may be used to treat non-life-threatening conditions.

All reasonable steps that are in the person’s best interests should be taken to prolong life. Before deciding to withdraw or withhold life-sustaining treatment, the decision-maker must consider the range of treatment options available and any statements that the person has previously made about their wishes and feelings.

If a written statement has been made in advance this should be taken into account.

And if a formal “advance decision” has been made to refuse life-sustaining treatment, this cannot be ignored as long as it meets the MCA’s requirements and applies to the person’s circumstances.

34 The Journal of Dementia Care

Consult others If it is practicable and appropriate, anyone else acquainted with the person can be consulted to see whether they have any information about their wishes and feelings, beliefs and values. In particular, try and consult anyone previously named by the person for this purpose; anyone engaged in caring for them; close relatives, friends or others with an interest in their welfare; any attorney appointed under a lasting power of attorney; and any deputy appointed by the Court of Protection.

For decisions about major medical treatment or where a person should live and where there is no-one else to consult, it will be necessary to consult an independent mental capacity advocate (IMCA) as specified under the MCA. Remember, when consulting any of the above, the person who lacks capacity still has the right to keep their affairs private.

So it would not be right to share every piece of information with everyone.

Maintaining rights Always see if other options may be less restrictive of the person’s rights.

Remember, it is the person’s rights we are looking at and what may be less restrictive for them, not what others may feel would be the best option. This is particularly pertinent when looking at where a person should live.

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Each organisation will have their own specific documentation for best interests decisions. Staff should make sure a record is kept of the process of working out best interests for each relevant decision and filed in the healthcare records. This record should set out: • capacity assessment • decision to be made and what steps were taken to help the person make the decision themselves • how the decision about best interests was reached • what the reasons for reaching the decision were • who was consulted to help work out best interests • what factors were taken into account • what options were considered, risks and benefits related to these options, and outcomes for each option.

Conflicting concerns A decision-maker may be faced with people who disagree about a person’s best interests. Family members, partners and carers may disagree between themselves, or they might have different memories about views expressed by the person in the past. Carers and family might disagree with a professional’s view about the person’s care or treatment needs.

The decision-maker will need to find a way of balancing these concerns or deciding between them. The first step should be to review all elements of the MCA checklist with everyone involved, including the person who lacks capacity and anyone party to earlier discussions.

It may be possible to reach an agreement at a meeting to air everyone’s concerns, but an agreement in itself may or may not be in the person’s best interests. Ultimate responsibility falls to the decision-maker.

People with conflicting interests should not be cut out of the process, but decisionmakers must always ensure that the interests of those consulted do not overly influence the process of working out the

best interests of the person who lacks capacity.

Settling disputes If someone wants to challenge a decisionmaker’s conclusion, there are several options: • Involve an advocate to act on behalf of the person who lacks capacity to make the decision.

• Get a second opinion.

• Hold a case conference.

• Pursue a complaint through the organisation’s formal procedures.

Ultimately, if all other attempts to resolve the dispute have failed, an application to the Court of Protection will need to be made for a decision.

Advocacy An advocate may be useful for providing support for the person who lacks capacity to make a decision if: • the person has no close family or friends to take an interest in their welfare • family members disagree about the person’s best interests • family members and professionals disagree about the person’s best interests • there is a conflict of interest for people who have been consulted in the best interests assessment • the person who lacks capacity is already in contact with an advocate • the proposed course of action may lead to the use of restraint or other restrictions on the person • there is concern about the protection of a vulnerable adult.

Lasting power of attorney Some people may have made a lasting power of attorney (LPA), appointing a health and welfare attorney. Where the health and welfare attorney has the appropriate powers (including, in the context of decisions about life-sustaining treatment, the power to consent to or refuse such treatment), and the LPA has been registered with the Office of the Public Guardian (OPG), the attorney is the lawful decision-maker. They must, however, follow the principles of the MCA – including fulfilling the duty to consult with others – and can only act in the person’s best interests.

Remember, the LPA must be registered with the OPG to be valid. It is important you ask to see the original LPA document (embossed with “validated – OPG” at the bottom of each page) and check that it does indeed confer the appropriate powers required for the decision. A copy of this can be taken, signed and placed in the person’s healthcare records for future reference.

Be clear that being named as “next of

Key points for practice • Always assume someone has capacity to make a decision or act for themselves unless proven otherwise • Someone assessed as lacking capacity should be at the heart of decisions about them • The “decision-maker” is responsible for establishing what would be in the person’s best interests • Decisions should always start with consideration of the least restrictive option, which should be actioned where possible • Document the process of working out best interests for each relevant decision and file in the health care records • A lasting power of attorney (LPA) must be registered with the Office of the Public Guardian to be valid. Make sure you see the original, check the appropriate powers, then copy, sign and place in the records • Best interest meetings are not required under the Mental Capacity Act but are good practice and advocated by NICE

kin” on medical records does not grant any legal right of decision-making, and that those close to the person cannot give consent to or refuse treatment on that person’s behalf, unless they have been formally appointed as a health and welfare attorney or a court-appointed deputy.

If there is genuine doubt or uncertainty that the attorney is acting in the best interests of the person, this should be resolved as soon as possible. If you have concerns about an attorney, you should contact the OPG. If doubt or disagreement persists, the Court of Protection should be involved.

Attorneys cannot be compelled to make a decision. In some circumstances, they may feel unable to draw a clear picture of what would be in the person’s best interests, or unable to make the decision required. Where attorneys exempt themselves from the decision-making process, responsibility will fall to the relevant clinician to carry out a best interests assessment.

Best interests meetings Best interests meetings are not required by the MCA, but are a good way of making important healthcare decisions for adults who lack capacity and show that their interests have been properly considered (British Medical Association 2019).

Depending on the complexity, urgency and importance of the decision, and the

extent to which there is agreement or disagreement between an attorney or court-appointed deputy and others involved in the person's care, it may be advisable to call a best interests meeting to decide on the next steps (NICE 2018).

If a decision-maker considers it helpful or necessary to convene such a meeting, they should: • Involve the person themselves, unless a decision is made that it would be contrary to their best interests for them to attend the meeting. Where this is the case, this decision and the reasons for it should be recorded.

• Consult carers, family, friends, advocates and any attorney or deputy about the meeting in advance, giving them time to ask questions and give their opinions, for example about how to include the person in decision-making.

• Keep in mind that careful planning, preparation and gathering of information maximise effectiveness of best interests meetings, to include consideration of where and when meetings are held and who should be involved, and identifying the issue to be discussed.

• Make it clear that the purpose of the meeting is to assist the decision-maker in making a decision in the person's best interests.

• Make sure members of the health care team and those close to the person are equally involved in the meeting, allowing sufficient time for everyone to contribute to the meeting.

• Clarify the role of each person attending, especially the identities of the decisionmaker and the meeting chair, as these may be different people.

• Provide all information in an accessible format.

• Circulate a detailed note of the meeting to all those attending to check its accuracy before it is finalised.

Decision-makers should specify a timely review of the implementation of the actions resulting from the best interests decision. If the review establishes that the decision was not successfully actioned, the decision-maker should take suitable steps such as one of the following: • convening a multi-agency meeting to resolve issues blocking successful implementation • reassessing and making a new, more achievable best interests decision • initiating referral of the decision to the Court of Protection • considering whether further action is appropriate.

Conclusion Applying best interests principles to make a decision for someone who lacks‰

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‰ capacity may not be a quick process.

Relevant parties should be involved and allowed to express their views, there may be conflict, and the person lacking capacity should be placed at the heart of the decision. All this takes time.

After all, the aim is nothing less than to determine what the individual would have done, said or felt, if they still had the capacity to express these views in order to make the decision themselves.

As with any principle of the MCA, the process is not ultimately about anyone else or what they believe; it is about the person who lacks capacity.

Decisions should always be made so that the least restrictive option is considered first and where possible actioned. This may not always be possible, but should still be considered, to help ascertain which of the remaining options is closest to it but safe at the same time. Clear documentation is paramount in these cases to ensure due process has been followed.

The Dementia-Friendly Hospital Charter (NDAA 2018) enshrines patients’ rights to make decisions themselves and state their preferences for their future care. All of this aligns with the National Dementia Action Alliance’s Dementia Statements, namely that people with dementia and their families... ... have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society.

Our diagnosis should not define us, nor should we be ashamed of it.

The MCA protects the rights of people with dementia to make decisions for themselves, with support if necessary, even if others don’t agree with the decision or think it unwise. But, equally, it protects their rights if they are assessed as lacking capacity. Best interests decisions – and the procedures for making them – are critical if this section of the MCA and its code of practice are to be well implemented. n References British Medical Association (2019) Best Interest Decision Making for adults who lack capacity. A toolkit for Doctors working in England and Wales. London: BMA Department for Constitutional Affairs (2007) Mental Capacity Act 2005 Code of Practice.

London: Stationery Office.

National Dementia Action Alliance (2018) Dementia-Friendly Hospital Charter. London: NDAA. National Institute for Health and Care Excellence (2018) Decision-making and mental capacity (NG108). London: NICE.

Our day out: an arts

Evidence is growing for the benefits of the arts for people with dementia, but those living in rural communities can be hard to reach. Hannah Zeilig explains how one project found an answer here is mounting evidence of the potential for the arts to support the health and wellbeing of people living with dementia (Camic et al 2018, APPG 2017). Governments across Europe, the US and Japan are funding arts-based projects, such as Finland’s programme to better understand the role of culture in wellbeing and the work of Saitama Gold Theatre in Tokyo to promote the performing arts.

These projects are supported by an increasing number of studies that have demonstrated that the arts can transform public perceptions of dementia, encourage communication by and with people with dementia, promote creativity and help to sustain selfhood and interconnectedness (Beard 2012, Sarkamo 2014, Mental Health Foundation 2011, APPG on Arts, Health and Wellbeing 2017).

Our Day Out (ODO) is a programme of cultural and creative activities, delivered by a range of professional artists (predominantly dancers and musicians) that are aimed at engaging older people with and without a dementia in some of the most rural localities of Norfolk. It

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36 The Journal of Dementia Care July/August 2020 Vol 28 No 4

Hannah Zeilig is a senior research fellow at the University of the Arts, London and an associate research fellow at the University of East Anglia. She has been collaborating with Creative Arts East since 2016 on the evaluation of their ‘Our Day Out’ programme embodies many of the principles learned from research, taking seriously the idea that the arts offer more flexible forms of engagement than traditional care and can help everyone to re-imagine dementia (Zeilig et al 2015).

In particular, art can help us to engage “feelingly” with dementia and help to combat many of the prejudices we may have about this condition (Zeilig & Hughes 2019). ODO, funded by the Spirit of 2012 Trust and delivered by Creative Arts East, is part of a flourishing arts scene that includes initiatives as diverse as singing, drama, visual art, photography, clowning and puppetry, to name a few.

More than 400 older people have so far

programme in rural Norfolk taken part in ODO’s high quality arts sessions, which began in 2016 and are delivered in six localities across Breckland and north Norfolk. Sessions take place twice a month in each locale, in easily accessible community centres and church halls, and activities have extended to belly dancing and samba as well as more conventional participatory music and dance.

In each session, the emphasis is on creative engagement and the process of making, exploring and playing together.

Indeed, this programme of arts-based interventions has been fundamentally concerned with ways in which the arts can inspire creative and relational interactions between people with and without dementia.

The UK’s rural communities represent a much older demographic than the national average, and this will continue to grow in a way that is likely to result in higher numbers of people with dementia in these areas (Alzheimer’s Society 2018).

The Health and Wellbeing in Rural Areas report states that, in terms of health, older people are worse off and in greater need of health and care services, as well as being more prone to social isolation and loneliness (LGA/PHE 2017). Yet the circumstances of older people in rural settings have received significantly less attention than those of their urban counterparts (Hagan Hennessey & Means 2018).

Participants in the ODO programme commented in interviews on difficulties accessing services, such as the poor bus service to Norwich, and the resulting feelings of isolation. In the two small, relatively impoverished localities where these comments were made, ODO

sessions were extremely well attended and characterised by a sense of camaraderie and positivity. As observed in the evaluation, sessions provided a much-needed focal point for these communities, an opportunity to connect and interact meaningfully with others.

an opportunity to engage individually with the music or dance and also to notice and appreciate the pleasure that others were getting from the same activity. This created a strong sense of community. Significantly, one man, living with a more advanced dementia, observed: ‘It brings us all together’.

Evaluation Evaluation of the ODO programme was both qualitative and quantitative, involving a range of validated tools and measures such as in-depth observational data, interviews, gathering of baseline data and the use of the Canterbury Wellbeing Scale (CWS). The CWS was used with 133 participants with and without dementia before and after up to eight sessions over the initial three years (2016-2019).

Together, these methods have established benefits for participants’ wellbeing, including a greater sense of connection alleviating social isolation, and the enjoyment of new experiences. A summary of the findings is given here.

Interview themes Interview themes emerged from the observational data and analysis of a series of 12 semi-structured interviews with participants, including five who were living with dementia, four older people without a dementia and three family carers. All those interviewed were able to give informed consent and were keen that their views should be represented.

Sense of connection Sessions provided an opportunity to become part of a new interactive group engaged in a structured arts activity. The sessions inspired connection with others,

New experiences The ODO sessions were notable for introducing participants to new creative experiences, as noted by Gerald: “It’s completely different to what I normally do.” Gerald’s reflection illustrates the relevance of continuing to spark the interest of people with a dementia and the role of creative arts groups in enabling it to happen. This echoes observations and debates about the ability of people with a dementia to undertake new learning and the enjoyment that may be stimulated by offering new experiences (Camic et al 2014, Quinn & Blandon 2017).

Feelings Several interviewees elaborated on how the sessions had contributed to their sense of wellbeing, supporting findings from the wellbeing scale outlined below.

All of them felt that the sessions were doing people good and helping them to feel better.

Evie, another participant, repeatedly remarked how beneficial the sessions were for him: “I feel a lot better, …. Puts life into you, you know.” Diane observed that the sessions affected her selfconfidence and gave her inner resources that she could “draw on”. Similarly, Polly noticed that the sessions made her feel “more confident really”. ‰

Photographs show a range of cultural and creative activities run by professional artists for older people with and without a dementia in rural Norfolk, through the programme Our Day Out (ODO) Pictures on these two pages: Anita Staff Photography

Vol 28 No 4 July/August 2020 The Journal of Dementia Care 37

‰ CWS findings The CWS is a subjective measure of wellbeing that was developed specifically for people with dementia (Camic et al 2017) but is suitable for capturing wellbeing “in the moment” among others too. Quantitative data obtained from the CWS were subject to statistical analysis, which showed enhanced wellbeing scores just after sessions when compared to the period just before. It revealed that arts activities such as those provided by ODO can increase wellbeing, as was noted in the statistical report on the CWS data (Camic & Strohmaier 2019).

Given the potential limitations of a scale, the evaluative team were aware of the difficulties of measuring wellbeing numerically. It may be argued that the CWS measures subjective wellbeing and that this is a weakness because it lacks objectivity, but its focus on feelings can also be seen as a strength. In any case, the CWS elicited results which together with the thematic analysis provide persuasive evidence of the value of ODO sessions.

Future directions Participants in our evaluation all talked about the valuable connections that they were able to make with others, the new experiences and beneficial feelings the programme provoked. Their comments were backed up by evidence from the CWS. As one participant observed: “It’s absolutely a medicine for your mind, and humour and everything. Can’t say any other word for it, marvellous.”

Activities and programmes in dementia care can often be single session “one-offs” which do not allow for creative engagement (Camic et al 2018), building skills and confidence, developing social networks or new learning to occur. Based on the results of this evaluation, the benefits of multiple session arts activity programmes delivered by professional artists are evident.

Participants who were engaged with the programme for nine months or more were significantly less likely to say they often lacked companionship (9% reduction) or that they often felt isolated

from others (12% reduction). Ninety four percent of participants told us that they feel their involvement in ODO has helped them make social connections.

Although the value of ongoing community arts programmes is widely recognised, sustaining and resourcing these can be difficult (Murray & Crummet 2018) This is particularly the case in rural areas where there have also been declines in community services and public transport (LGA/PHE 2017). But putting local communities and their access needs at the heart of the programme has enabled Creative Arts East to target and reach those most vulnerable in the county.

In addition, the integration of people with and without a dementia in arts activities has been an effective way of helping to forge links and counter prejudices about dementia. The ODO programme has recently received further funding until 2022 and a prestigious Royal Society for Public Health Arts & Health Award.

Thanks to the additional funding, ODO can now be delivered in two further locations in west Norfolk. Future plans include investigating in more depth the effect that the sessions have on carers’ wellbeing, loneliness and ability to care. n References Alzheimer’s Society (2018). Dementia-friendly rural communities guide. London: Alzheimer’s Society.

All Party Parliamentary Group (APPG) on Arts, Health and Wellbeing (2017) Creative health: The arts for health and wellbeing. London: APPG. Beard RL (2012) Art therapies and dementia care: a systematic review. Dementia 11(5) 633-56.

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Camic PM, Tischler V, Pearman CH (2014) Viewing and making art together: a multisession art-gallery-based intervention for people with dementia and their carers. Aging & Mental Health 18(2) 161-168.

Camic PM, Hulbert S, Kimmel J (2017) Museum object handling: A health promoting community-based activity for dementia care.

Journal of Health Psychology 24(6) 787-798.

Camic PM, Zeilig H, Crutch SJ (2018) The arts and dementia: Emerging directions for theory, research and practice. Dementia 17(6) 641644.

Camic PM, Strohmaier S (2019) Statistical Report on the Canterbury Wellbeing Scale for Creative Arts East. Unpublished.

Hagan Hennessey C, Means R (2018) Connectivity of Older People in rural area, in Walker A (ed) The New Dynamics of Ageing (vol 1). Bristol: Policy Press.

Local Government Association/Public Health England (2017) Health and Wellbeing in Rural Areas. London: LGA/PHE. Mental Health Foundation (2011) An evidence review of the impact of participatory arts on older people. London: Mental Health Foundation.

Murray M, Crummett A (2018) Combating social exclusion through community arts, in Walker A (ed) The New Dynamics of Ageing (vol1). Bristol: Policy Press.

Quinn J, Blandon C (2017) The potential for lifelong learning in dementia: a post-humanist exploration. International Journal of Lifelong Education 36(5) 578-594.

Särkämö T, Tervaniemi M, Laitinen S, Numminen A et al (2014) Cognitive, emotional, and social benefits of regular musical activities in early dementia: randomized controlled study.

Gerontologist 54 634–650.

Zeilig H, Poland F, Fox C, Killick J (2015) The arts in dementia care education: A developmental study. Journal of Public Mental Health 14(1) 18–23.

Zeilig H, Hughes J (2019) A Different Understanding: a conversation about art.

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Young onset dementia Recent research on young onset dementia evidences emerging work around pre-diagnosis, diagnosis, the need to improve post-diagnostic support and the need to join up services at the systems level. Third-sector organisations that offer postdiagnostic support at the community level rely heavily on volunteers. Implications for policy and practice are that community-based commissioning of integrated services between health care, social care and the third sector contribute to providing the continuity and stability required in dementia support and care along the dementia trajectory. This collaborative discussion document draws on research and considers how to take forward work on community-based dementia support.

Mayrhofer A, Shora S et al (2020) Living with young onset dementia: Reflections on recent developments, current discourse, and implications for policy and practice. Ageing and Society, 1-9 (First view). Published online 5 May as doi 10.1017/S0144686X20000422 (Open access).

Delivering a dementia care intervention with video links This study aimed to determine whether delivery of an intervention using telehealth gave similar outcomes to a delivery of the same program using face to face home visits.

63 dyads were randomised to receive either telehealth or home visit delivery of the same intervention. The intervention is delivered predominantly by an occupational therapist to problem solve, educate, build skills and address stress management. The authors conclude that it is feasible to offer this intervention via telehealth and doing so reduces travel time resulting in similar benefits for families as well as increasing accessibility.

Laver K, Liu E et al (2020) Does Telehealth Delivery of a Dyadic Dementia Care Program Provide a Noninferior Alternative to Face-ToFace Delivery of the Same Program?

A Randomized, Controlled Trial.

Research summaries The research papers summarised here are selected for their relevance and importance to dementia care practice by our research editor (Theresa Ellmers). We welcome suggestions of papers to be included. If you would like to contribute a summary or a short comment on an important research paper recently published, drawing practitioners’ attention to new evidence and key points that should inform practice, please contact theresa.ellmers@investorpublishing.co.uk.

American Journal of Geriatric Psychiatry 28(6): 673–68. Published online March 2 as doi 10.1016/j.jagp.2020.02.009 (Open access)

Dementia Care Mapping EPIC Trial This randomised controlled trial investigated the effectiveness of Dementia Care Mapping™ (DCM) for reducing agitation in 726 care home residents with dementia in 50 care homes, with followup at 6 and 16 months. The study found that DCM was not superior to the control group on any outcomes. Only a quarter of intervention homes completed more than one DCM cycle indicating that standard care homes may be insufficiently resourced to implement DCM. The authors conclude that no benefits of DCM were evidenced and alternative models of

implementation, or other approaches to reducing agitation should be considered.

Surr C, Holloway I et al (2020) Effectiveness of Dementia Care Mapping™ to reduce agitation in care home residents with dementia: an open-cohort cluster randomised controlled trial. Effectiveness of Dementia Care Mapping™ to reduce agitation in care home residents with dementia: an opencohort cluster randomised controlled trial. Aging & Mental Health. Published online April 13 as doi 10.1080/13607863.2020.

1745144 (Open access).

Namaste care at home This qualitative study is the first to explore the use of Namaste care (previously used in care homes) in people’s own homes. Three focus groups with volunteers implementing Namaste care through a hospice to community

Evidence for practice/Research news This section aims to keep readers up to date with research in dementia care and the current best evidence to support practice. We aim to provide a channel of two-way communication between researchers and practitioners, so that research findings influence practice and practitioners’ concerns are fed into the research agenda.

We welcome contributions such as: • Information on recently-completed studies that are available to readers • Notice of the publication (recent or imminent) of peer reviewed research papers with practical relevance to dementia • Requests or offers for sharing research information and experience in particular fields of interest.

• Short comment on important research papers recently published, drawing practitioners’ attention to new evidence and key points that should inform practice.

Please contact theresa.ellmers@investorpublishing.co.uk

Vol 28 No 4 July/August 2020

programme, and interviews with family carers, were undertaken. The authors found that Namaste care provided holistic and personalised care to people with both moderate and advanced dementia, improving engagement and reducing social isolation. In this study, carers often chose to use Namaste care sessions as respite. Therefore individualised Namaste care activities led to positive outcomes for people with dementia and their carers.

Dalkin SM, Lhussier M et al (2020) Namaste care in the home setting: developing initial realist explanatory theories and uncovering unintended outcomes. BMJ Open 2020: e033046. Published online Jan 22 as doi 10.1136/bmjopen-2019-033046 (Open access)

Palliative care in advanced dementia Many patients with advanced dementia do not access palliative care despite the increased recognition of their palliative needs. This systematic review of mixed method studies investigated the factors influencing provision of palliative care services for people with advanced dementia. It was found that even though the provision of palliative care was empirically recognised as a care step in the management of dementia, there are barriers that hinder access of patients with dementia to appropriate facilities. It is argued that health and social care regulatory bodies need to integrate a palliative approach into their care using the identified facilitators to achieve effective palliative care in this population.

Mataqi M & Aslanpour Z (2020) Factors influencing palliative care in advanced dementia: a systematic review. BMJ Supportive & Palliative Care 10(2):145-156. Published online May 27 as doi 10.1136/bmjspcare-2018-001692 (Open access)

‘Persistent vocalisations’ in advanced dementia ‘Persistent vocalisations’ by people with dementia are often characterised as agitation or

The Journal of Dementia Care 39

aggression. This qualitative study aimed to describe the context surrounding persistent vocalisations expressed by people with advanced dementia in nursing homes through qualitative observations and interviews with care staff. This paper discusses the two themes: ‘routine of staying in room’ was identified for participants considered 'disruptive' to others, and ‘providing care without communicating’ triggered persistent vocalisations. The authors argue these findings provide insight into a lack of therapeutic interactions between staff and people with advanced dementia with persistent vocalisations and the paper suggests ongoing, mandatory, evidence-based training on person-centred interventions and dementia care communication.

Sefcik J, Ersek M, Cacchione P (2020) Nursing home residents with advanced dementia and persistent vocalisations: Observations of surrounding context. International Journal of Nursing Older People: e12322 (early view). Published online 8 May as doi.org/10.1111/opn.12322.

Oral health Research in four nursing homes aimed to determine and compare the prevalence of orofacial pain in residents with and without dementia and explore the association between orofacial pain and health factors. Among other data collected, the study utilised the Orofacial-Pain Scale for NonVerbal Individuals and selfreport for residents who were able to communicate about pain. Orofacial pain was significantly more prevalent in residents with dementia than those without. Having a soft diet, dry mouth and poor oral hygiene in dentate residents were predictors of orofacial pain in residents with dementia. The authors argue that oral health care should be routine for residents, especially for those with dementia, to improve oral health and decrease the risk of developing orofacial pain. van de Rijt L, Feast AR et al (2020) Prevalence and associations of

Cochrane Special Collection – Coronavirus (COVID-19): remote care through telehealth The measures adopted internationally to curb the spread of Covid-19 have led to significant changes in how healthcare is accessed and provided. As face-to-face consultations between healthcare staff and patients pose a potential risk to both parties, remote care and telehealth offer alternatives.

This Special Collection includes Cochrane Reviews that address using telehealth to support clinical management of various conditions, including dementia. It includes reviews of using telehealth to provide carer support as well as empowering patient self-management of their long-term conditions. First published on 6 May 2020 and updated on an ongoing basis. Available here: https://www.cochranelibrary.com/collections /doi/SC000043/full orofacial pain and oral health factors in nursing home residents with and without dementia. Age and Ageing 49(3):418–424.

Hospital staff This systematic review of qualitative data explored the experiences of hospital staff who care for people living with dementia, in order to improve staff well-being and the experience of care for people with dementia in hospital. The authors found that without institutional-level changes, hospital staff are often unable to provide person-centred care even when they have the experience and knowledge to do so. Institutional-level areas for change included training; performance indicators and ward cultures that prioritise psychological needs alongside physical needs; staffing levels; inclusive approaches to carers; physical environments, social interaction; systems of documentation about individual needs and cultures of sharing knowledge across hierarchies.

Gwernan-Jones R, Abbott R et al (2020) The experiences of hospital staff who provide care for people living with dementia: A systematic review and synthesis of qualitative studies. International Journal of Older People Nursing:e12325 (early view). Published online May 15 as doi 10.1111/opn.12325 (Open access).

Family reminiscence using a tablet The aim of this qualitative study was to explore the impact of a home-based, personalised reminiscence programme facilitated through an iPad app

40 The Journal of Dementia Care July/August 2020 Vol 28 No 4

on 15 people living with dementia and their family carers. Six key themes emerged related to usability: revisiting the past; home use; impact on the person living with dementia; gains and abilities; and impact on relationships.

The reminiscence experience also appeared to facilitate the development of new insights among participants that emphasised abilities and gains rather than disabilities and losses. The significance of personal memories was a core theme although this could be challenging, particularly if memories were distressing.

Carers tended to become more relationship-focused, whereas people living with dementia highlighted the significance of learning new skills. The study concluded that individual specific reminiscence supported by an iPad app can have a positive impact on people living with dementia and their carers at an individual and relationship level.

Ryan A, McCauley C et al (2020) ‘There is still so much inside’: The impact of personalised reminiscence, facilitated by a tablet device, on people living with mild to moderate dementia and their family carers. Dementia 19(4): 1131-1150.

End of life information for families The purpose of this qualitative study was to identify types of information family caregivers of persons living with dementia in nursing homes would find useful in preparing them for their relative’s end-of-life and assist them to make decisions

about care. Nursing home staff, palliative care clinicians and bereaved family carers were interviewed. Eight categories were identified including: (i) dementia in general, (ii) dementia towards end-of-life, (iii) care of persons dying with dementia, (iv) family caregivers as decision makers, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a nursing home. The authors conclude that healthcare providers need to support and encourage dementia literacy for family caregivers, particularly through proactively broaching these topic areas, as family caregivers may not recognise or value their need for information.

Thompson G, Hack T et al (2020) Clarifying the information and support needs of family caregivers of nursing home residents with advancing dementia. Dementia (OnlineFirst). Published May 28 as doi 10.1177/1471301220927617.

Arts in dementia education This paper explores the impact of a 12-week visual arts program “Dementia and Imagination” on the attitudes of 146 family and professional caregivers through a mixedmethods longitudinal investigation across three settings (care homes, county hospital and community venues), underpinned by a conceptual framework of the arts in dementia care. The findings indicate that art programs have the potential to make visible the capabilities of people living with dementia, enabling caregivers to see the person behind the condition.

This study also highlights practice implications for future implementation, such as the role of the arts in dementia care education.

Windle G, Caulfield M et al (2020) How Can the Arts Influence the Attitudes of Dementia Caregivers? A Mixed-Methods Longitudinal Investigation. The Gerontologist: gnaa005 (advance article). Published online May 24 as doi 10.1093/geront/gnaa005 (Open access)

BOOKS/RESOURCES n Dementia and Human Rights Suzanne Cahill, Policy Press, ISBN 9781447331407, £27.99 Suzanne Cahill’s book aims to address the gap in current understanding about dementia from a social justice perspective. It comprehensively and clearly outlines the key concepts related to theoretical models of social disability and human rights and explores the practical application of these principles in dementia settings.

Cahill critically appraises the historically dominant medical model and its shortcomings in relation to dementia care and suggests a practical alternative relying on a rights-based approach.

While the book obviously spends time reflecting on some of the failings of dementia care and support, it is at heart a positive call for action. The final chapter is entitled “Grounds for Hope” and hope was the overwhelming feeling

I was left with after finishing this book.

Through sensitive critique of long established ways of providing care, and the blending of legal concepts with practical application, Cahill passionately lays out a blueprint for dementia support that is both effective and respectful of a person’s rights.

She begins with a summary of the conceptual frameworks relevant to rights-based approaches, including straightforward descriptions and explorations of sometimes complex legal frameworks, such as the Universal Declaration of Human Rights and the UN Convention on the Rights of Persons with Disabilities. These are linked clearly to real examples that bring abstract concepts to life.

She then moves on to the practical application of a rights–based approach in a

variety of settings, including care settings and a person’s own home. Due to the accessible way in which the book is written I would suggest that this would be appropriate for anyone with an interest in dementia care and support regardless of background. It is essential reading for those developing services and considering the most appropriate methods to provide support in a way that upholds the rights of people living with dementia.

I would particularly direct managers to chapter six where a comprehensive plan for service delivery is outlined.

However, the book is equally appropriate for people living with dementia and those supporting them to fully understand how rights relate to care. To this end I found the summary boxes particularly helpful as they

reflections on the inadequacy of care and support and how that feels, often in evocative memories of his childhood.

Warm, empathetic anecdotes reveal a mature understanding of his parents, their history and lived experience.

As Baines explained in his article in the last issue (JDC May/June 2020), the graphic memoir form “allowed many things to be done at once. I wanted to record some of the working-class history I was raised in. I was able to find ways to show the impact of

the illness on my Mum and the impact on me. I was also able to use visual jokes and metaphors to express things that language alone simply couldn’t do.”

The Sisyphean task of getting care organized, for example, felt like a game of snakes and ladders, “where there were only snakes… with a constant sense of going back to square one“. A puzzle maze expresses the way his mother became harder and harder to reach, both mentally as the dementia progressed and physically as he searched for her room in a large care home.

The illustrations bring memories to life: childhood holidays in Skegness, with its “wet cardboard coloured” sea; a special shared moment with his father after their football team’s victory.

Baines skilfully weaves these strands together to create an absorbing whole, expressed in graphics and writing of a high order. An exceptional book.

Sue Benson, Managing Editor, JDC

n Afloat Nigel Baines, ISBN 978-1-9161855-0-0 Find out more about Nigel’s work and purchase a copy of Afloat (£10 + p and p) at www.nigelbaines.com – click on the SHOP link or book cover image. As the book is self-published it is only available currently through this outlet In this engaging graphic memoir, Nigel Baines tells the story of his mother’s dementia and his journey as a carer, weaving in memories of a working class childhood and perceptive points about inadequate, ineffective services.

So far, so moving, poignant and real. But Baines’ skill as a graphic artist and author lift it far above the norm, with spare, well-chosen words and graphics that tell more than words alone, and add humour – sometimes in bitter

provided the key points in an accessible format.

I hope Cahill will inspire people to both demand that their rights are met in society and inspire decision makers to make more positive efforts to promote the rights of people living with dementia in all aspects of society.

Dr Sarah Butchard, consultant clinical psychologist, Mersey Care NHS Foundation Trust/ University of Liverpool

Resources A free one-month trial of a reminiscence app showing vintage TV adverts is on offer. The Ad-Memoire app makes historic adverts from some of Britain’s biggest advertisers available to view, both from TV and print media. It includes themed reels of 1950s and 60s TV ads, on-screen prompts for conversation starters and quiz sheets, and is designed to be easy for care staff and activity leaders to use. An initiative by the History of Advertising Trust charity, the app was developed with academics at the University of East Anglia. www.hatads.org.uk A free online course for family and professional carers of people with dementia has been provided by Nottingham University. An eight week course run by FutureLearn for the university is entitled Foundations in Dementia. It explores the signs and symptoms of dementia, interventions, support networks, among other things, and includes

Vol 28 No 4 July/August 2020 The Journal of Dementia Care 41

RESOURCES contributions from 30 dementia experts as well as family carers.

Among the benefits of the course, says Professor Justine Schneider from the university, is to counter the impact of lockdown. “The course offers discussion areas that may help meet carers’ needs for peer support, which are particularly acute at this time,” she said. www.futurelearn.com/courses/d ementia-awareness-training New from HammondCare is Dementia Support UK, a dementia consultancy service for care staff which uses videoconferencing and provides oneto-one support. It focuses on a non-pharmacological and person-centred model of care and is designed to help staff better understand behaviour, solve problems and build capacity within the care home.

Since the idea was first developed in Australia in 2016, HammondCare says it has supported more than 25,000 people with dementia in all care settings including hospital. https://dementiasupportuk.org/

The Daily Sparkle reminiscence service has joined forces with Person Centred Software to develop a smartphone app particularly suited to meet the needs of care home residents isolated in their rooms. The aim of the app is to encourage relatives to engage with residents in fun activities while talking with them over Person Centred Software’s Relatives Gateway video link.

“These interactions can not only foster the warm feelings of being connected but can also provide vital mental and emotional stimulation for the resident,” the two organisations said. melony@dailysparkle.co.uk What is involved in providing good end of life care for people with dementia? The Social Care Institute for Excellence (SCIE) tries to answer the question in new guidance, End of Life Care and Dementia: An introduction, which asserts that good person-centred care is the heart of it. There are sections on making decisions in a medical emergency, managing symptoms, communication

Blogs I’m watching

by Mark Ivory Wendy Mitchell has some interesting reflections in a film she has made with video artist Suki Chan. It is entitled Hallucinations and to create it Suki visited Wendy and recorded words and images to which she added a rather mesmeric musical soundtrack. It will be exhibited as a video installation at the Bluecoat (Liverpool) gallery next year, but it was briefly viewable on Wendy’s blog in late spring. In the video Wendy reflects on her own enjoyment of photography: “Dementia plays tricks on my mind.... A photo in my mind would be a way of saying what I’m seeing is dementia but what I’m taking a photo of is reality.”

And she talks about her love of writing as evidenced in the blog and her book Somebody I Used to Know: “I can type as though the dementia has never entered my world because that part of my brain doesn’t seem to be affected, and so that gives me a release from dementia. It takes me away for that moment. It’s a real comfort to type because I feel normal.”

Hallucinations is not her only project with Suki Chan as there will be another film called Fog in My Head showing at the

across the healthcare team, and specialist end of life resources. It says that people with dementia “may present with signs that suggest they are very close to death, but in fact can show these signs for many months or even years. Or they may seem near to death and then improve and live for many months longer.” www.scie.org.uk A Covid-19 Good Practice Resource Guide has been produced by NAPA, the National Activity Providers Association. It responds to the challenge of “how do we isolate people from each other and keep them well without making them lonely?” and answers questions such as “what is social distancing,” acknowledging that applying social distancing measures poses difficulties because they restrict people’s movement around care homes. NAPA provides suggested ways of working based on government guidance and best practice principles. www.napa-activities.co.uk

Bluecoat. “I so enjoy working with her because of the uniqueness of the completed work as you will see from the video,” Wendy says. https://whichmeamitoday.wordpress. com Isolation during lockdown has had “definable benefits,” says George Rook.

“My CPU has slowed down, my memory is crumbling away, and I cannot process all those tiny myriad thoughts and flecks that cross your brain every moment fast enough,” George comments. “Each one takes longer and excludes others. It takes hours, days, to work these through. It also takes quiet, calm, natural surroundings, safety and sleep, none of which are plentiful when travelling around the country, or to the local NHS Trust.”

However, accompanying the advantages of a less hectic pace of life, there is a potential “big negative” – loss of confidence. “Will we still be able to cope, outside our safe, quiet bubbles?” He thinks there is a balance to be struck between the pleasures of engaging with family and friends and the need to disengage from those who irritate us. “I still get annoyed when I see a tweet from a local Trust, or the CCG, or read about

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Music playing devices from which favourite songs can be downloaded have been distributed to care homes to help residents during the coronavirus lockdown. Torquay-based Purple Angel Music Company, created four years ago by Norman McNamara, has asked care homes and family members to send them lists of residents’ favourite songs, from which the company creates a personalised playlist for the resident on an MP3 player. Purple Angel asks for a small donation towards its charitable work in return. https://purpleangel-global.com The University of Worcester’s Association for Dementia Studies has put out a call for applications for a fully online postgraduate certificate starting in September. Modules for the Postgraduate Certificate in Person-Centred Dementia Studies will be delivered through distance learning and the closing date for applications is 20 July. www.worcester.ac.uk/study/ find-a-course

some health care report in the paper. But less and less. And I no longer look for trouble, aka information.” https://georgerook51.wordpress.com Kate Swaffer in Australia thinks coronavirus has brought into focus the extent to which basic civil liberties are denied to people with dementia. She calls it Prescribed Disengagement, when someone newly diagnosed is advised to give up work, study and life as they knew it in the way that Kate herself was. “What this pandemic has done is to highlight more surely than ever before just how much harm is done, and how many basic civil liberties are denied to us,” she says in her blog. “Yes, even in 2020, at the time of diagnosis people are still being Prescribed Disengagement.” Most people still choose to look the other way, she thinks, but Covid-19 has emphasised inequities in access to universal health coverage and the loss of rights as acquired disabilities like dementia become more pronounced.

“Every week at the DAI peer to peer support groups I attend or co-host, newly diagnosed members report the same, so in spite of significant advocacy, nothing has changed.” https://kateswaffer.com

RESOURCES & EVENTS Software company Log my Care has produced a download for coronavirus called Assessment Guidance on CQC’s Emergency Support Framework. Created with Age UK special adviser Stuart Prince, the download is free and is one of seven coronavirus-related resources Log my Care has shared with care managers and carers. www.logmycare.co.uk Dementia charity My Life Films, which makes life story films for people with dementia, has a new approach to capturing people’s memories that does not involve leaving home. Instead of filming in physical space, it is happening in virtual space with the help of Zoom. Photographs, interviews and music help to make up the films and media platforms like WhatsApp and We Transfer have also helped to make them possible. Contact: charlotte@mylifefilms.org Keeping residents engaged and active has been tough under lockdown, but the NAPA Helpline may well be able to help. The team responsible for the helpline, a NAPA (National Activity Providers Association)

initiative, can provide specialist practical and emotional support through a phone or email service.

They can help practitioners, care teams and family members provide activity and engagement for the people they support. helpline@napa-activities.co.uk or 020 7078 9375 HPP is offering a Covid-19 Resource and Support Center, providing support to frontline workers with materials to read and download, as well as links to websites with relevant information. Among the resources is Dementia Care at a Distance. ReMeLife also has Covid-19 offers and activities, including six months free use of its activities and communication software. www.healthpropress.com and https://remindmecare.com A virtual speech therapy support group meets weekly at a Zoom “video café”. It is intended to be a communicationfriendly space where participants can talk, message or just listen.

Meetings take place every Thursday at 3pm. admin@talkaboutspeechtherapy. com or 07748 585462

For practitioners involved in housing with care, there is a Coronavirus Info Hub available through the Housing LIN. It is split into three sections signposting to Housing LIN practice briefings, government guidelines and other useful information. There is also an online Health Exchange where visitors to the site can upload documents they have found helpful. www.housinglin.org.uk Newcastle Dementia Service has produced an eight-minute animated film on YouTube, for care home staff, on Meeting Needs During the Covid-19 Pandemic. The animation presents the 8 fundamental needs framework, namely the needs for physical comfort and freedom from pain, feeling safe, love and belonging, self-esteem, feeling in control over oneself and the environment, meaningful physical touch, having fun, and meaningful occupation. It looks at the difficulties of meeting these needs during the pandemic and examines how some care homes have creatively tackled the issue. www.youtube.com/watch?v=blJ jUwBhVpk&feature=youtu.be

The Dementia Ageing Technology Engagement (DATE) Lab at Toronto University, which has done extensive work on digital games accessible to people with dementia, is running weekly online sessions on Tuesdays.

The idea is to get people up and running with tablet computers and help them find dementiaaccessible games. Professor Arlene Astell, director of DATE Lab, said the online sessions were being offered to support people with dementia and carers who are at home during the pandemic. https://zoom.us/j/97808236007 A dedicated smartphone app has been launched for social care workers by the Department of Health and Social Care (DHSC).

The Care Workforce app is designed to act as a digital hub for staff to access the latest updates, guidance and support on coronavirus. The DHSC said mental wellbeing guidance for workers would soon be published and would be signposted on the app, which it claimed would act as a “one-stop shop” to help staff keep themselves well. https:// workforce.adultsocialcare.uk

Events Many conferences due to take place ithis year have been postponed due to coronavirus and new dates have yet to be announced. Here is the latest information as we went to press, including rescheduled events. n 27-31 July Alzheimer’s Association International Conference Online-only this year, AAIC brings together clinicians and researchers to discuss the latest developments in dementia science. Information at www.alz.org/aaic n 9-10 September Festival of Health Manchester conference on how public services can work together to improve health and reduce health inequalities.

More information at www.festivalofhealth.com/ home.htm

n 16 September Next Steps for Adult Social Care in England Policy conference online with speakers from SCIE, Care England and the LSE. Details at www.westminsterforumprojects. co.uk n 8-9 October NICON20 Belfast conference for Northern Ireland’s health and social care sector discusses delivery of the Health and Wellbeing 2026 strategy. Details at www.nhsconfed. org/events/2020/10/nicon20 n 20-22 October 30th Alzheimer Europe Conference The planned Bucharest event will now be next year, but this year’s event goes online to discuss “dementia in a changing world”. www.alzheimer-europe.org

n 23-24 October Alzheimer’s Show 2020 London event sharing the latest knowledge and products. Details at www.alzheimersshow.co.uk n 29 October Dementia 2020: The Final Review London conference reviewing the government’s 2020 strategy and assessing the next steps to be made. More information at https:// 2020.alzheimers2020.co.uk. n 9-10 November 2020 Dementia, Care & Nursing Home Expo Conference and exhibition in Birmingham for care home owners, managers and dementia specialists. Tickets free at www. carehomeexpo.co.uk/index.asp. n 11-12 November UK Dementia Congress 2020 Organised by JDC, the 15th UK Dementia Congress in Bournemouth will bring together

the latest ideas, research and innovations, as well as being a great opportunity for professional networking. Go to www.careinfo.org. n 3 December Future of Ageing 2020 London conference on delivering a better society for all generations.

More information at https://ilcuk.org.uk. n 3 December Tackling Loneliness and Social Isolation in Older People Conference in London looking at progress and sharing successful and sustainable interventions. Go to https://localgovernmentinsight.com. n 10-12 December ADI International Conference Alzheimer’s Disease International event in Singapore, titled Hope in the Age of Dementia: New Science, New Knowledge, New Solutions. www.adi2020.org.

Vol 28 No 4 July/August 2020 The Journal of Dementia Care 43

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