Journal of Dementia Care - November/December 2020

For all who work with people with dementia

Vol 28 No 6 November/December 2020

Generations growing together Also inside this issue:

n

A safe place to calm and minimise risk n High time to respect family carers as equals n A HUG is all you need

TUESDAY 10TH – THURSDAY 12TH NOVEMBER 2020 VIRTUAL EVENT BOOKINGS NOW OPEN – TICKETS £49+VAT Over the last 15 years the UK Dementia Congress, organised by the Journal of Dementia Care, has built a reputation as the single event those working in dementia care do not want to miss – and we don’t want this year to be any different. Recent times have highlighted the passion, commitment and tenacity in the dementia care community. We are going to take as much of this as possible online, with a diverse selection of plenary and themed sessions, and opportunities for conversation and connections. We will come together in November, wherever we all are, to network and share ideas and experiences in a positive and supportive environment and to celebrate the contribution that you all make and will continue to make to the lives of people with dementia and carers.

We are excited to deliver an interactive virtual Congress, where delegates will have access to all plenary and themed sessions at UKDC, the virtual exhibition and poster presentations, plus networking and chat facilities to socialise with fellow attendees, speakers and exhibitors.

Attendees will also be able to view the Dementia Care Awards presentations on the 12th November! Additionally, there will be access to the sessions after the event, so you will be able to revisit the sessions.

WHY SHOULD YOU ATTEND?

PLENARY SPEAKERS

• •

Paola Barbarino, Alzheimer’s Disease International

• • • • • • • •

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

People living with dementia (DEEP) and carers (tide) Professor Linda Clare, University of Exeter Jackie Pool, Sunrise Senior Living & Gracewell Healthcare Dr James Warner, Imperial College London

careinfo.org/event/uk-dementia-congress

Programme: theresa.ellmers@investorpublishing.co.uk Sponsorship and virtual exhibition opportunities: caroline.bowern@investorpublishing.co.uk Bookings: events@investorpublishing.co.uk

in association with

academic partner

stream partners

satellite symposium sponsor

Association for Dementia Studies

Plenary speakers • Themed sessions • Symposia Interactive workshops • Poster presentations 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.

in association with

academic partner

supporting partner

stream partners

satellite symposium sponsor

Association for Dementia Studies

TUESDAY 10TH – THURSDAY 12TH NOVEMBER 2020

VIRTUAL EVENT

Sessions will include: • Covid-19 – review, reflection and the road forward in dementia care • Innovations and evaluations in staff development, training and education Full • Creative ways to connect through technology programme • Music and music therapy – Individual arts interventions – online Intergenerational arts practice • The ‘uniform’ question • Care homes workshops: Equality Act and Mental Capacity Act • Stress and distress: Non-pharmacological interventions / A review and new guidelines on responding to ‘behaviours that challenge’ • Self-management, peer and early support • Care and support for people with dementia 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 • Younger people with dementia – diagnosis and support, resources from the Angela Project • Carers and Families – caring in lockdown – distance caring – living grief and bereavement • LGBTQ people living with dementia organised by

#UKDC2020

careinfo.org/ukdc

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

organised by

JournalOfDementiaCare

@JDementiaCare

#UKDC2020

For all who work with people with dementia

Vol 28 No 6 November/December 2020

n Project updates & viewpoints

Bringing the generations together benefits everyone

Inside this issue...

18

12

Loneliness and social isolation are common problems among older people with dementia, but a primary school-based project has found a solution. Alex Kerr-Dineen and David Hinchcliffe report on an initiative bringing together the “bookend generations”

How day centres are unlocking lockdown

14

Day centres shut their doors during lockdown, depriving people of social contact and support.

But the practicalities of reopening have to be carefully considered, say Katharine Orellana, Kritika Samsi and Jill Manthorpe, who have produced guidance on “unlocking lockdown”

High time to respect carers as equals

16

21

Government and policymakers must act now on the needs of family carers if they are to meet the many challenges they face. Anna Gaughan says it is time to treat unpaid carers as key workers

How hard is waving?

18

Vamos Theatre was commissioned by the BBC during lockdown to make four short films about communicating with people in care homes. Artistic director Rachael Savage tells the true story behind the inspiration for the films

Arts and dementia: shaping the future

19

It is widely believed that the arts can improve quality of life in care, but more hard evidence is needed. Ruby Swift and Karen Gray discuss research to build up the evidence base and an event to assist with putting it into practice

32

n Features

A special safe environment to calm and minimise risk

21

Finding the right response to stress and distress behaviours on a hospital ward requires careful planning. Julie Young and colleagues decided that a specially designed safe environment adjacent to the ward could be the way forward.

How to maximise vision for the best quality of life

24

Poor vision increases the risk of falls and makes it harder to take part in social activities. In the second of two articles on eyesight and dementia, Marianne Piano sets out ways to help people with dementia see the world as clearly as possible

Involvement in meetings and events: tips for good practice 26 When face-to-face meetings and events resume, there is likely to be a renewed commitment to involving people with dementia and carers. Clare Mason and colleagues reflect on what they have learned from their own experiences and provide some tips for good practice

Why do we need Rare Dementia Support?

29

How can younger people with rare forms of dementia be better supported in health and social care? Emilie Brotherhood and colleagues launch a series of articles focusing on young onset dementia with a look at the role of the Rare Dementia Support network

Sometimes a HUG is all you need

32

Providing emotional comfort for care home residents has been especially challenging during the pandemic. Cathy Treadaway, Jackie Pool and Asa Johnson evaluated a playful object called HUG to find out how it could help Front cover: Thanks to all involved in the intergenerational project described on pp12-13

4 The Journal of Dementia Care November/December 2020 Vol 28 No 6

Regulars n Comment by Paola Barbarino n News

n JDC Asks

n Dementia Diaries

n Perspectives by Mark Ivory n Research reports n Resources n Events

5 6 10 11 15 35 38 39

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

A hard reckoning that has brought us together Paola Barbarino, CEO, Alzheimer’s Disease International orld Alzheimer's Month, held in September, has always been a chance for our community to raise awareness of the multi-layered issues surrounding dementia. But this year it was different. This is the year we realised the little value our society gives to those who have dementia. From absurd triage decisions in hospitals, to the reckless exposure to the virus of people in care homes, it has been a year of very sharp reckoning.

In April I realised that, if we continued like this, we could end up with fewer than 50 million people living with dementia globally, and not for the right reasons.

When the data started coming in the numbers were scary: 20% of people who died with Covid-19 in Italy, 26% in the UK and 66% in Canada had dementia.

In the early days of coronavirus, we were very active, gathering the global community through our webinars and exchanging practical advice on our website.

We collected and distributed so many ideas on a wide range of issues, for example: • caring for people with dementia while wearing a mask • preventing governments from issuing fines to those who walk about and become disorientated, disregarding social distancing • recreating daily routines and stimulation while at home • helping families interact face to face with loved ones in care homes, despite distancing.

We felt the power of our community as everyone pulled together and realised that we could really make a difference while supporting each other and combating the stress we were all under. But civil society cannot do it all.

Right now, we are concerned that lack of social care when people are shielding has led to a deterioration in cognitive abilities for those people who so far had managed relatively well on their own at home. We know that better design of care homes could have helped lessen the impact of the virus (see our latest World Alzheimer’s Report 2020) but also that heightened social distancing in care homes, in the name of safety, may lead to worsening mental health for residents.

In May, the World Health Assembly met to discuss – understandably – only coronavirus-related matters. We took this as an opportunity to remind the World Health Organisation of the human rights of those living with dementia and of the mental strain on families deprived of social care or unable to stay in contact with their loved ones face-to-face. (See JDC Asks in this issue, p10).

As we have entered another coronavirus-riddled period, I want to remind JDC’s readers that there are millions of people experiencing this all over the world. We must continue to stick together, help each other and advocate with our governments. Come to our webinars, share your views and inform ours so that we can better represent your interests. The more voices we are, the more our governments will have to listen. You are not alone.

W

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 6 November/December 2020 The Journal of Dementia Care 5

NEWS

News in brief Music as a first-line response for distress Recommendations from an Australian research project outline how music can be used systematically as a first-line response to stress and distress behaviours among people with dementia. In a paper for the Journal of Alzheimer’s Disease, researchers from Western Sydney University give details of a trial programme which looked at the effect of music on people with dementia receiving social care support. Lead researcher Dr Sandra Garrido said it examined how music could be utilised in standardised yet individually tailored ways. “We wanted to dig deeper to find out more about how individual symptoms might be interacting with different features of music—such as the tempo, or the lyrics, or the mode—so that we could develop a standardised way that music could be used for people with dementia,” said Dr Garrido.

Links between sleep apnoea and Alzheimer’s New research has strengthened evidence for links between sleep apnoea and Alzheimer’s disease, showing that Alzheimer’s trademark amyloid plaques start in the same place and spread in the same way in both conditions. The Australian and Icelandic joint study, published in the journal Sleep, says the reasons for the connection between sleep apnoea and Alzheimer’s remain unclear. Lead investigator Professor Stephen Robinson commented: “We know that if you have sleep apnoea in midlife, you’re more likely to develop Alzheimer’s when you’re older, and if you have Alzheimer’s you are more likely to have sleep apnoea than other people your age. The connection is there but untangling the causes and biological mechanisms remains a huge challenge.”

Views sought on residential respite Researchers involved in the “Taking a Break” study at King’s College London are looking for people with dementia and carers to share their views on short stays in care homes, often known as “residential respite”.

They want to hear about people’s experiences, including what they think of short stays during the Covid-19 pandemic, and hope to cast light on what people get out of their short stay and why some others do not arrange one in the first place. The researchers are also keen to promote the study among black, Asian and minority ethnic (BAME) groups and would like to hear of organisations and individuals to approach. Contact laura.cole@kcl.ac.uk.

Innovations for visiting care home residents As Covid-19 triggered new care home lockdowns in parts of the country, many care homes are thinking up new ways of keeping residents in touch with their relatives. In a confidence-boosting measure Brendoncare, which runs 10 care homes in the south of England, is inviting family members of new residents in two of its homes to move in for a fortnight while they settle down. “It’s a two-week holiday, if you like, when you are in the bubble with your loved one,” chief operating officer Zoe McCallum was reported as saying. Meanwhile, the Healthcare Homes Group, which runs 45 homes in the south of Engand, has invested almost £1 millon in garden “visiting pods” as a way of providing safe spaces for relatives to visit residents.

Campaigners pledge court action over visiting rights As care home restrictions on visitors have tightened in line with government guidance and local public health requirements, amid a new upsurge in coronavirus, campaigners have pledged to take the government to court.

John’s Campaign, which lobbies on visiting rights in dementia care, said it would take legal action after talks with the government on opening care home doors to more family visitors collapsed.

In a move backed by Alzheimer’s Society, John’s Campaign co-founder Julia Jones said the government had failed to take account of how important family visits are, both for residents and their relatives, and that she would seek a judicial review of the guidance.

“Our lawyers have decided that there’s nothing to be gained by further negotiation – except wasting more time for families,” Jones said. “We remain profoundly shocked by the lack of interest by government in understanding the impact of their actions on care home residents – especially those living with dementia – and

their families. We can’t imagine any other group in society being treated in this way.”

Campaigners argue that designated family visitors should be given keyworker status with personal protective equipment (PPE) and regular coronavirus tests. Dementia UK and Alzheimer’s Society wrote to health secretary Matt Hancock demanding that residents’ relatives be treated as keyworkers.

“Family carers are an integral part of the care system – it is they who know how to get the loved one to eat and drink, the difficulties they might have communicating their needs and wants, what reassures them and what worries them,” said Alzheimer Society director of research and influencing Fiona Carragher.

“The tools exist – PPE and testing are available. It’s about understanding that it is absolutely essential to provide these, as it is a human right for people to get the care and attention they so desperately need.”

See our debate on care home visits in JDC Asks (p10).

Championing Social Care initiative A campaign to raise funds for charitable causes in social care and lift the profile of the sector has been launched by Hallmark Care Homes CEO Avnish Goyal. The “Championing Social Care” initiative, which also involves CareTech Foundation, Sekoia and Majesticare Luxury Care Homes, hopes to relaunch Care Home Open Day in 2021 and plans to try out a new virtual event in January called “Care Sector’s got Talent”.

A spokesperson for the initiative said that 26 social care leaders had agreed to become “ambassadors” to promote the work, which also includes the next Care Sector Fundraising Ball. “Core to the work of the initiative is continuing to fundraise for sector-relevant charitable causes and to build on the achievements of our Care Sector Fundraising Ball, which has raised some £350,000 in the first two years alone,” Goyal said. For details, go to www.championingsocialcare.org.uk.

Bumper crop: Green-fingered residents were inspired to grow a dizzying array of flowers, shrubs, fruit and veg for Colten Care’s second annual produce show. Overall winner was The Aldbury in Poole, where resident Beryl is pictured next to a willow basket filled with flowers grown in the care home garden.

6 The Journal of Dementia Care November/December 2020 Vol 28 No 6

NEWS

Winter Plan promises free PPE but limits care staff movement Free personal protective equipment (PPE), a chief nurse for adult social care nationally, and an additional £546 million for the Infection Control Fund were the government’s headline promises in its new Adult Social Care Winter Plan.

But the plan also announced restrictions on the movement of care staff to curb the spread of coronavirus between settings and was criticised by Age UK and the National Care Forum for coming close to banning family visits to care homes.

The government said it could ask local authorities and the Care Quality Commission (CQC) to take “strong action” where staff movement was not being restricted, including issuing warning notices and placing conditions on a provider’s registration.

“We will be monitoring the implementation of this carefully and will be swift in our actions to protect residents and colleagues across the country,” said health secretary

Matt Hancock.

Care Provider Alliance welcomed the prospect of a new chief nurse, who it said would meet an “essential need” for expert clinical advice, whereas the Local Government Association called for efficient distribution of the free PPE and measures to ensure tests for all who need them.

While Alzheimer’s Society said the Winter Plan was “positive”, it added that the proposals needed to go further by allocating nursing staff to individual care homes throughout the pandemic.

“Despite best efforts from hardworking care staff, over a quarter of all Covid-19 deaths have been people with dementia, and the rise in care home infections that we’re now seeing – even though there has been little lifting of restrictions on those homes – is extremely concerning,” commented Fiona Carragher, director of research and influencing at the charity.

ADI report calls for design standards As the World Alzheimer Report was launched on World Alzheimer’s Day in September, governments everywhere were urged to recognise dementia as a disability and ensure buildings are designed accordingly.

Global dementia charity Alzheimer’s Disease International (ADI), which produced the report, urged governments to set standards for good dementia design, so that the resulting therapeutic benefits were available to people at home, residential and day care facilities, hospitals and other public buildings and spaces.

ADI chief executive Paola Barbarino said dementia design provided an opportunity to adapt built environments in the same way as physical disability design had led to great innovation.

“We need to apply design guidelines and principles for people living with dementia in the same way as design guidelines are provided for people living with a physical disability,” Barbarino said.

“I remember people saying that accessible lifts and ramps were impossible to install in old buildings but look at it now! If we can cater for those with visible disabilities, how can we refuse to cater for those with invisible disabilities?”

She added that dementia design was not necessarily expensive and could include changes to carpets and décor, removal of hazards, reducing stimulation and providing clear wayfinding.

Go to www.alz.co.uk for the World Alzheimer Report.

News in brief LGBT+ social media campaign Opening Doors London (ODL) has mounted a social media campaign highlighting the work of the ODL Rainbow Memory Café and the new online Rainbow Carers group. These groups support LGBT+ people with dementia and carers. Highlights of the campaign include a series of video interviews explaining the value of tailored support for LGBT+ people affected by dementia and a blog by a member describing the experience of caring for his partner with dementia during lockdown.

More information at www.openingdoorslondon.org.uk.

Survey: care workers undervalued Most adults in England believe that care workers are undervalued and underpaid, a survey of 1,500 people commissioned by the National Care Forum (NCF) suggests. The survey, conducted independently by Information by Design, found that 81% believed care workers are undervalued and 80% thought they should be better paid. Three quarters (74%) said care home workers do a brilliant job. Vic Rayner, NCF’s executive director, said: “Care workers have been the stalwarts of the Covid-19 front line. 24 hours a day, seven days a week our professional care home staff have continued to provide care under the most challenging of circumstances.”

Clampdown on harmful medicines Older patients in hospital are the focus of a new drive to prevent them from taking potentially harmful medicines. A £2.4 million initiative led by the University of East Anglia (UEA) aims to clamp down on “risky” medicines, prescribed to older people but which over time have come to have more risks than benefits. According to UEA, half of older people admitted to hospital have been prescribed such medicines, which can lead to side effects. Researchers worked with senior geriatricians and pharmacists from five hospitals to share best practice and train pharmacists with a view to changing their beliefs about the risks of deprescribing. “These medicines offer little or no benefit to the patient but their side effects cause problems, like making them feel drowsy, nauseous or having trouble getting to sleep,” said Dr Sion Scott from UEA’s School of Pharmacy.

Elder Care in fast-growing tech firms list A sign that live-in care has emerged strongly from the pandemic is the success of Elder Care, which has been named one of the UK’s fastest growing companies in the Sunday Times Sage Tech Track 100. The live-in care agency, which provides round-the-clock care for people in their own homes, recently announced the creation of 1,500 new jobs, increasing the size of its workforce by 50%. It reported “record-breaking demand” and claimed that thousands of families were seeking alternatives to residential care. “Covid-19 has presented an unprecedented challenge to everyone working in the social care space,” said Elder Care’s CEO Pete Dowds. “It’s a challenge that, as a tech-enabled care company, we were uniquely positioned to meet.”

Call for full sick pay for social care staff Most social care staff who fall ill will have no alternative but to carry on working and should be given full sick pay, the GMB union has said. It said a survey of 1,000 staff had shown 81% of respondents would be forced into work if they became ill on statutory sick pay (SSP). And 80% would be forced to borrow from friends and family or take on more debt to make ends meet, the survey indicated. The findings provide the rationale for the GMB’s Care Full Pay campaign, calling on providers and the government to ensure full sick pay is introduced for care staff.

“The issue is this - workers in a healthcare setting on statutory sick pay is an infection control risk,” said GMB national officer Rachel Harrison.

“It’s time for the government and care providers to take action and provide the full sick pay that will ensure care staff aren’t forced into contemplating working whilst sick.”

Vol 28 No 6 November/December 2020 The Journal of Dementia Care 7

NEWS

News in brief Liverpool dementia care homes reprieved Two Liverpool dementia care homes that were due to be closed after only a year in operation have been granted a reprieve. Shaw Healthcare, which runs the homes – Milvina House in Everton and Brushwood in Speke – on behalf of the council, had said they were no longer financially viable because of the change in market conditions resulting from Covid-19. But Liverpool City Council now says it has negotiated to keep them open until next year or until a new operator can take over.

When they opened in October 2019, they were billed as the first council-commissioned care homes in over 25 years.

Lobby group champions family carers Alzheimer Scotland’s National Dementia Carers Action Network (NDCAN) has called for greater recognition for the role of family carers in supporting their relatives in care homes. The lobby group said carers’ role had been neglected despite the stress of lockdown, which appeared to have accelerated the decline in care home residents’ health.

“We are a vital part of the system, but our contribution seems very low on the priority list currently and the role we can play in caring for our loved ones needs to be recognised,” NDCAN said. “Our wellbeing is also affected by being excluded from their lives.”

• Alzheimer Scotland chief executive Henry Simmons has called on the Scottish Government to make arrangements for tailored visiting plans for every family with a relative in a care home. Simmons said that every family should have a named health worker who would work with the family and the care home on the visiting plan, with a view to overcoming “current blockages” to reintroducing care home visits.

Dementia as cause of death underestimated An American study suggests that dementia is the underlying cause of nearly three times more deaths than official US records show. The study, published in the journal JAMA Neurology, estimates that 13.6% of US deaths can be attributed to dementia. This is 2.7 times higher than data from death certificates would indicate, which suggest that 5% of all deaths are due to dementia. “Understanding what people die of is essential for priority setting and resource allocation,” said study lead author Andrew Stokes, assistant professor of global health at Boston University’s School of Public Health. “In the case of dementia, there are numerous challenges to obtaining accurate death counts, including stigma and lack of routine testing for dementia in primary care. Our results indicate that the mortality burden of dementia may be greater than recognised.”

NCF pushes for Covid testing of inspectors Not-for-profit care home representatives the National Care Forum (NCF) have urged the government to reverse a decision to allow inspectors into homes without undergoing a coronavirus test beforehand. In an open letter to health secretary Matt Hancock, NCF said the policy of excluding Care Quality Commission (CQC) inspectors from weekly testing prior to care home visits was an “extraordinary decision”. It added that inspectors typically spent several hours on-site, moved between different groups of residents and staff, and potentially visited multiple homes.

Closed dementia support services must reopen to avoid hospitalisations A costly rise in hospital admissions could result unless dementia support services closed by Covid-19 are reinstated quickly.

A study led by Liverpool University found that the closures were significantly related to lower mental wellbeing and higher levels of anxiety in older adults and people affected by dementia.

Unless action happens now to enable pre-pandemic levels of social support, health and care services will be “overburdened with increased rates of costintensive care home admissions and health care visits,” the study concludes.

It highlights closures to vital support services, such as day care centres and support groups, which it says have taken a “huge toll” on the

mental wellbeing of people with dementia and their carers.

“Our research highlights the significant negative impacts service closures are having on the lives of those affected by dementia,” said lead researcher Dr Clarissa Giebel, a research fellow at the university.

“It is not viable to take away vital care any longer and policy guidance needs to address how activities and day care could be restarted based on individual circumstances in relation to Covid-19 risks and balancing them with the benefits of social support measures.”

The study is based on a survey of 569 people with dementia, unpaid carers and older adults, and was published in the International Journal of Geriatric Psychiatry on 18 September.

Lockdown led to 92m more caring hours A report from Alzheimer’s Society finds that family and friends have spent an additional 92 million hours caring for people with dementia since lockdown began on 23 March. It says lockdown resulted in a “double whammy” because dementia symptoms worsened while underfunded social care left families out in the cold.

A survey of more than 1,000 people found that 95% of family carers said extra caring hours had impacted negatively on their own physical or mental health, while 69% reported feeling constantly exhausted.

“The tens of thousands of deaths of people with dementia – and the grieving families each one has left behind - must make us pause,” said Alzheimer’s Society CEO Kate Lee. “I know if social care had been on an equal footing with the NHS, we would not have seen deaths on such a scale.”

Home care research programme A three-year research project looking at home care for people with dementia, among other things, has been launched in a partnership between Home Instead Senior Care and the University of York. The programme will work with Home Instead teams across the UK to amass an evidence base for what works in the provision of person-centred care. “Particularly in a post-pandemic world we have seen the vitally important role that being cared for in your own home environment can make in the quality of care provided to our vulnerable seniors,” said Mark Laing, Home Instead’s director of innovation. “The three-year research partnership will provide the social care sector with an evidence-based view of home care, helping to shape what home care looks like in the future.”

Hand in hand: Celebrating National Arts in Care Homes Day, the Together Project unveiled artworks from an intergenerational activity to reach across the divide between care homes and their communities during Covid-19. Its Hand in Hand Together initiative aims to address loneliness among people shielding in care homes. Doreen Weeks is seen with her handprint picture, while Iris Sutheran also gets creative with her hands!

8 The Journal of Dementia Care November/December 2020 Vol 28 No 6

Pandemic has challenged human rights for people with dementia Basic human rights to care for people with dementia, such as access to health care and family contact, may have been ignored during a pandemic which has seen “extremely high death rates” among older people with the condition.

In a global impact study, conducted by researchers from the LSE and UCL, data on Covid-19 mortality in people with dementia ranged from 66% of all deaths in Canada and 26% in the UK to 19% in Italy.

Up to 75% of Covid-19 deaths in care facilities across the world have involved dementia as an underlying condition.

One of the key findings concerns possible infringement of human rights: “These rights

include access to intensive care units, hospital admissions, health care and palliative care.

The controversial ban on visits (including spouses and care partners) to care homes across the world, has kept people with dementia detached from essential affective bonds and provision of family care for many months.”

Paola Barbarino, chief executive of Alzheimer’s Disease International, said a global action plan was needed to protect people with dementia from the “worst ravages” of coronavirus. “People with dementia are being disproportionately impacted by this pandemic and are in danger of being forgotten,” she added.

Risk to the future of dementia research Researchers from universities across the UK have written an open letter to the government warning that the future of dementia research is being put at risk. They told science minister Amanda Solloway that funding shortages inflicted by the pandemic could lead to a “lost generation of researchers.”

Backed by Alzheimer’s Society and Alzheimer’s Research UK, the letter says that UK medical research is set to lose £310 million in charity funding because of a predicted 41% decrease in their research spend in 2020/21. The signatories fear that the search for new dementia treatments could be set back by several years.

Urging the government to deliver on its manifesto promise to double dementia research funding to £160 million a year, the letter states: “We are increasingly concerned about the impact this will have on our highly skilled early-career dementia researchers, who, without financial support, will be left with no option but to leave the dementia research field for more consistently funded research opportunities, or to leave academic research altogether.”

Potential new treatment for Alzheimer’s: A potential new treatment for Alzheimer’s disease could be licensed for use in the US by Spring 2021. According to pharmaceutical company Biogen, which is seeking regulatory approval for its aducanumab drug, the American Food and Drug Administration has granted it “priority review” meaning that it will decide whether to approve the new drug by March 7. Biogen previously reported that trials of the drug showed that patients given high doses in the early stages of Alzheimer’s disease experienced significant benefits on measures of cognition and function, such as memory, orientation and language. Approval in the US would pave the way for regulatory approval in the UK as well, making it the first new treatment in more than 15 years.

Care home group brings prescribing in-house: Royal Star & Garter care homes have brought the ability to prescribe medications “in-house” by supporting two of their staff to train as non-medical prescribers. Lead nurse Yuriy Bukovych and lead physiotherapist Maddie Venkatesh qualified in July and are now able to provide a rapid on-site response to residents’ health needs, avoiding delays caused by having to wait for GP prescriptions. Pauline Shaw, director of care at Royal Star & Garter, said: “The benefits of having non-medical prescribers in a care home setting are clear to see. Not only do residents benefit from speedier access to medication, but it cuts out red tape and eases the pressure on prescribers, such as GPs. It is our intention to have non-medical prescribers in all of our homes.”

News in brief Financial challenges faced by PAs Employees taken on by disabled people, including those with dementia, to provide care and support have suffered financially and have been given little guidance during the pandemic. Personal assistants (PAs) employed by people with social care needs, using personal budgets, have displayed high levels of loyalty to the people they support but often at considerable cost, a new study suggests. Study co-author John Woolham, from King’s College London, said there was little practical information on safe practices. One PA told the study that he cared for a woman with dementia with impaired hearing: “When I put the mask on it was almost impossible for her to hear me, so I kept moving the mask so she could hear me, or speak up and it wasn’t really working she was struggling to understand me with the mask on; it made her more agitated, more unsettled.”

Financial wellbeing at risk says expert International Longevity Centre UK director David Sinclair has warned that changes in the way we manage money are putting the financial wellbeing of people with dementia at risk. Writing about personal finances on the ILC-UK website, Sinclair argues that “unless we act quickly the changes in the way we manage money, from the ‘end of cash’ to post office and bank closures, risk the financial wellbeing of people with dementia.” He says that coronavirus will only accelerate the process, raising problems with access to cash and managing electronic payments, abuse and fraud, problems with money management and overspending or underspending. “People living with dementia are particularly likely to need protection and support when faced with unscrupulous business practices from ‘sharp’ or aggressive selling to consumer fraud,” Sinclair writes.

Study shows importance of relationships A Norwegian study, in which 35 people with dementia were interviewed about their needs in order to facilitate their involvement in services, finds that the three greatest needs were to stay connected, be active and participate, and to live for the moment. The study, reported in BMJ Open, also identifies an overarching theme: “the need to be who I am”.

Lead author Elisabeth Wiken Telenius and colleagues conclude: “Close and robust relations with family and friends can give significant support to people with dementia. However, living with dementia might put considerable strain on relations. Services should provide support to enhance relationships, encourage existing networks to remain stable and facilitate participation in meaningful activities for people living with dementia.”

Call for more routine dementia screening Alzheimer’s Society has called for routine dementia screening to be reprioritised as well as proactive case-finding by primary care professionals. The charity said that diagnosis rates fell from 67.6% to 63.5% between February and June, while memory service referrals plummeted from an average of 2,600 a month to well below 1,000. It added that measures were needed to combat growing waiting lists for memory services and to promote access to post-diagnostic support.

Life Changes Trust will now close in 2022 Scottish charity Life Changes Trust has decided to close a year earlier than planned, owing to the impact of coronavirus. Set up in 2013 with funding from the National Lottery Community Fund, the trust supports people with dementia, unpaid carers and young people with care experience. It was due to run until 2023 but will now wind up operations in March 2022 to make savings in some areas and increase funding to its beneficiaries in the meantime. The charity said in a statement: “We believe that these next 18 months are crucial months for young people with care experience, people with dementia and unpaid carers. They are a time to push ahead rather than hold back and we look forward to working with you to achieve our shared aims.”

Vol 28 No 6 November/December 2020 The Journal of Dementia Care 9

JDC asks...

How has the absence or curtailment of care home visits during the pandemic affected people with dementia in your experience? What, if any, would have been a better policy?

From left: Julia Jones, Martin Green, Joanna Boddy, Martin McGuigan and Fiona Carragher

iving in a care home entails a wider responsibility towards others than is usual in a domestic setting. There must be a corresponding focus on maintaining individual selfesteem and sense of identity.

Love matters.

It is why we are taking legal action against government guidance on visits. Without denying the genuine affection that care home staff often feel for residents, many people living with dementia need tangible reassurance that they are remembered and loved by their own families. This has been cruelly removed by undifferentiated visiting bans.

As early as last April it became obvious that residents who had been most regularly supported by close family were suffering. Weight loss, physical deterioration and behavioural change were commonly observed and deaths, not from Covid-19 but from dementia, began to rise above the norm.

It cannot be repeated too often that this outcome was known and avoidable. Failing to halt deterioration by restoring the essential input from family caregivers may be

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seen as an infringement of residents’ right to life – article 2 of the Human Rights Act – as well as the more obvious article 8 (family life).

It’s obvious that recklessly introducing infection into a care home would also infringe article 2. It’s equally obvious that a family caregiver, treated as a key worker within the individual resident’s support team, poses a lower risk than almost any other member of the care home community.

Their value should be understood and their access restored.

Julia Jones is co-founder of John’s Campaign ovid-19 has had an enormous impact on all aspects of society, but it has been particularly difficult for the care sector. One of the things we had to do to protect our residents was to make sure that we minimised the ways in which coronavirus could enter care homes. Sadly, this meant that we had to restrict visiting.

In the normal course of events this restriction on visiting would not have lasted so long and undoubtedly the lack of connection between

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families and loved ones has had an impact on some people living with dementia. Despite this being a very strange and unusual time, care homes have worked really hard to maintain the links between families and their loved ones, and we have seen the creative use of technology as a way of bridging the gap.

We have also seen many care homes thinking creatively about how they ensure people living with dementia have a good quality of life. I have seen imaginative examples of care homes maintaining connections, such as one which had a drive-through music event for families and residents. They have helped families to feel part of the support network around their relatives.

No one in the care home sector wanted to restrict visiting. We understand the impact it has had on people’s lives but visiting in a time of Covid-19 has posed an impossible dilemma. We have had to make the unimaginable choice between visiting rights and protecting lives.

Professor Martin Green is chief executive of Care England

10 The Journal of Dementia Care November/December 2020 Vol 28 No 6

he pandemic has impacted enormously on care home residents and families, affecting people with dementia disproportionately both in terms of excess deaths and quality of life. For some time, our carers action network has been working with others to improve the quality of care for people with dementia in care homes, including viewing family carers as partners in care and part of the care team.

We know these residents’ needs so well – acting as their voice and continuing to be involved with tasks such as feeding, activities, visits out and myriad other things. It is very much about collaboration with staff to ensure the best care possible.

In the present crisis other members of this team can be close to our loved ones, hug them and hold their hand, but families can’t and this adds to residents’ distress. We are referred to as visitors, but we are so much more than that.

We know this has affected the wellbeing of people living with dementia, who cannot understand why we are absent or distant, and some have given up as a result. The wellbeing of carers is also

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affected by this enforced exclusion.

In the current phase of coronavirus, it is essential that facilitating visiting by designated family members is prioritised, using personcentred risk assessment and PPE, with a better balance between risk of infection and risk of harm by excluding families. Our plea is for family members to be seen as equal partners in care.

Joanna Boddy is a committee member of the National Dementia Carers Action Network (Alzheimer Scotland) t is unarguable that restrictions on family visits have been devastating for people living with dementia and their loved ones. They’ve also amplified the emotional trauma of colleagues working through the crisis.

I have been astounded by the creativity of our teams in keeping the people we support active, engaged and connected with their families. But in truth, nothing comes close to close contact with the people you love.

The question of government policy on visits cannot be extracted from the overall government mishandling of the crisis. Against this backdrop of chaos, what hope was there for family visits?

And what should the policy be now?

Returning to regular and routine testing for staff and the people they support would be a start. End the fiasco where 40% of our tests never return results. Make families keyworkers and focus on providing them with shortturnaround testing. Invest in care providers to meet the considerable PPE, infection prevention and administrative efforts that come with facilitating visits.

Above all, I’d ask the government not to lose sight of this crisis. All of us would say that our families are the most important things in our lives.

In a society where that is the case, we cannot be considering

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using testing to bolster other areas – like culture and events – while loved ones are tragically kept apart.

Martin McGuigan is managing director of Community Integrated Care

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.

eople with dementia have been worst hit by this pandemic. Not only have thousands of lives tragically been lost, but many more have seen their dementia symptoms and overall wellbeing deteriorate significantly as a result of social isolation.

For so many care home residents, family visits are the centre of their world – it’s what they live for most. Having these suddenly vanish is devastating for everyone, particularly when people with dementia don’t understand why their family isn’t coming to see them.

The government did not put social care on an equal footing with the NHS and were too slow in introducing testing and guaranteeing personal protective equipment (PPE) for care homes, allowing coronavirus to spread like wildfire. They still refuse to recognise how important family carers are in helping to support loved ones, such as helping to get them to eat or take medicines.

While the government is now taking steps to protect people with dementia in care homes, we need them to go further to prevent further tragedy. The role of designated family carers must be treated as equal to key workers, ensuring they receive regular access to testing and PPE. We also want the NHS and local authorities working with social care providers and care homes in winter pressure planning.

This pandemic has exposed how threadbare our social care system is – the government must commit to long-term reform to make it universally available and free at the point of use, funded in a similar way to the NHS. Fiona Carragher is director of research and influencing at Alzheimer’s Society

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This time, three of the Diarists talk about the new skills they have been learning during Covid-19.

First Stephen Tamblin: “We’re going to do some water colours next month…so I’m looking forward to that. Never done it before in my life. It will make a change… to do something different… I tried doing a bit of drawing yesterday… drawing an orchid with a pencil, and didn’t do too bad a job for the first time. I am left-handed but I can’t use my left arm.

I’ve got to use my right and it makes everything harder… [But] I do the best I can, and that’s all you can do...”

Secondly, Dory (Teresa Davies) is learning British Sign Language: “I’ve started a free weekly course… BSL… I thought I’d give myself a challenge. Anyway, we’ve done one and I’ve really enjoyed it. I’ve got homework to do and I’m hoping… (at the end and with lots more practice) maybe I could go and do a talk about dementia to people hard of hearing or deaf. I’m quite positive about that, that’s going to be interesting to see how it goes.”

Finally, Jacqui Bingham has been having great fun making planters out of empty plastic drinks bottles: “You take the bottles, take the labels off, then you cut a hole in the middle, about seven inches long and five inches wide. Cut it off, to be thrown away (don’t need it again) and puncture some holes in the bottom for drainage. And then two bigger holes at the top near where you’ve cut, two at the bottom, same on the other side. This is for the string to go through.

“You then paint your bottles, any design your fancy takes you.

And then, when they’re dry of course, you can then thread the string through. First one and tie up, otherwise it’s all going to fall through and crash on the floor. Then you thread it through into the top part of the same bottle. And then you go into the next bottle and tie a knot - otherwise that’s going to crash down. And you carry on doing that, and you have two strings on the left side and two strings on the right side. Happy planting – and of course you put some plants in as well!”

Maybe readers will try this themselves!?

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 steve@myid.org.uk. Thank you for your support!

Philly Hare, co-director, Innovations in Dementia

Vol 28 No 6 November/December 2020 The Journal of Dementia Care 11

Bringing the generations together benefits everyone he Covid-19 pandemic has had extremely isolating consequences for the vast majority of older people, especially those with dementia.

But the virus has merely emphasised a pre-existing problem. Loneliness and social isolation are two societal issues that pose almost as much of a threat to the wellbeing of older people as anything a doctor can diagnose.

Finding ways to counteract the impact of the seclusion that can set in during old age is paramount for staying healthy, but there is a remedy to be found in the company of young children. Their refreshing perspective on the world around them and untarnished joy can neutralise feelings of sadness and solitude.

And spending time in the company of older adults can also be hugely beneficial to the younger generation. The first years of a child’s life are a crucial development period for their social, cognitive, behavioural and emotional skills. The different social and emotional skill sets which come with intergenerational contact, especially with age groups outside a child’s norm, allow for further development in their communication skills, empathy and social and emotional intelligence (Burke 2019).

Downshall Intergenerational Provision (DIG), the UK’s first older adults activity centre permanently embedded in a school, is a project established by co-author Dr David Hinchcliffe and Downshall primary school’s headmaster

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n Alexa Kerr-Dineen is a Skills for Care graduate management trainee at Care City in East London and Dr David Hinchcliffe is consultant old age psychiatrist in the Redbridge Older Adults Mental Health Team

12 The Journal of Dementia Care

Loneliness and social isolation are common problems among older people with dementia, but a primary school-based project has found a solution. Alex Kerr-Dineen and David Hinchcliffe report on an initiative bringing together the “bookend generations” Ian Bennett. Based in the London borough of Redbridge, it brings together the “bookend generations” in a mutually beneficial space; the majority of the older adults in the programme are living with early dementia.

A social hub with structured activities The initiative consists of a social hub for older adults and reception-aged children at Downshall, running three days a week from 10am to 1pm and providing structured activities which incorporate the ideas behind cognitive stimulation therapy while still following the national curriculum. Adults are

referred from Redbridge Older Adults Mental Health Team, Redbridge Memory Service and AgeUK Redbridge, Barking & Havering.

Referral criteria for the project prioritise those in the early stages of dementia and take into account an individual’s vulnerability to loneliness and isolation, which pose a risk to mental health and quality of life. The initial motivation was to fill a gap in services.

Changing demographics, financial pressures and cuts in day services for older adults meant that a radical rethink was necessary. DIG was the solution and is now part of the mental health team’s recovery

DIG pupils’ progress comes out ahead of national average

November/December 2020 Vol 28 No 6

pathway with referrals coming from care coordinators and doctors.

For the children there were also challenges as a growing proportion were starting school with problems relating to social and emotional development, reading and verbal communication. Some of these children, in particular, are encouraged to spend time with the DIG participants.

Effective models researched As the project developed under a steering group drawn from North East London NHS Trust, Redbridge council and Age UK locally, international research evidence was considered to see what models were already in use and demonstrably effective. Launched in 2017, it now has a capacity of 30 older adults per week, 10 for each day of operation.

A typical day at DIG might involve a cup of tea and a chat in the refurbished, dementiafriendly space for the older adults followed by an activity such as potting plants or an age-appropriate crafting exercise in a classroom with the 4 or 5-year-old reception children. There are two 20minute activity sessions during the morning with refreshment breaks in between, then the adults have lunch with slightly older year 5 children, aged 9 or 10, before they head home.

Expected benefits for the older adults, as indicated by the research evidence, include greater life satisfaction, physical activity and engagement, enhanced emotional wellbeing, more self-confidence and selfefficacy, and increased social interaction (Galbraith et al 2015; Giraudeau & Bailly 2019). These have certainly

Joint outdoor activities are part of the programme

been visible among DIG participants, but there are also plans to capture both quantitative data, through the Older People’s Quality of Life questionnaire (Bowling 2009), and qualitative data from interviews with the adults.

An example of the benefits of the programme in action is the case of a man with moderate dementia who was referred to DIG and attended with his wife. Not only could his wife enjoy a period of respite while her husband engaged in the activities in the classroom, but it also became clear to the professionals involved in the project that his symptoms were worsening. It resulted in a fast-track referral, via social services, to a setting more appropriate for his symptoms.

It was an excellent example of how cross-sector collaboration on DIG has helped with clinical issues as well as social interaction.

When the man was referred, he was not being regularly reviewed by mental health services, so it was through the project that the deterioration in his condition was brought to the attention of clinicians.

Learning how to make the garden grow

national roll-out for the project, which won the Dementia Care Innovation Award at JDC’s National Dementia Care Awards in 2019 and this year the Highly Commended award for Mental Health Service Redesign in Health Service Journal’s Value Awards.

One of the few challenges has been the project’s sustainability. Staff numbers were cut after the pilot year because of local authority cost pressures and DIG is now run by school staff, mental health team support workers and Age UK volunteers.

confidence and self-efficacy, better behaviour in school, reduced anxiety, increased self-management skills at school and interest in schoolwork, enhanced selfregulation, and higher standardised reading test scores (Burke 2019).

Anecdotally, the story of one particular child highlights the enormous potential benefits the programme offers. The child, who was an elective mute throughout nursery and the beginning of primary school, took part in the project throughout his year in the reception class. One day, he whispered in somebody’s ear, which proved to be the verbal breakthrough that led to what is now a chatty and receptive six-year-old.

We already have some quantitative data too, showing that many of the expectations

are being met. School staff have been measuring pupil progress and have seen an improvement in results from the first two years of the programme (see box). As seen in the box, the DIG pupils have progressed beyond the national average in many areas, including speaking, understanding and making relationships. Taking into consideration that “focussed” DIG pupils are initially chosen because they are not making progress in these areas, their achievement after two years testifies to its effectiveness.

Visitors to the project have praised it. Professor Wendy Burn, president of the Royal College of Psychiatrists (RCPsych), described it as “one of the most inspirational I have ever seen” to her Twitter followers. The RCPsych would like to see a

Intergenerational project participants show some of their work

Participants break for a rest and refreshments

Supportive alliance Coinciding with the project has been the formation of the North East London Intergenerational Strategic Alliance (NELISA), a supportive and strategic ‰

Benefits for the children Expected benefits for the children were positive changes in perceptions and attitudes towards older people, prosocial behaviours, personal growth, increased self-

Vol 28 No 6 November/December 2020 The Journal of Dementia Care 13

‰ alliance that stands behind projects like ours, several of which are being launched across north-east London.

NELISA was set up following an intergenerational conference to extend the project concept to other boroughs, linking older adult mental health teams and memory services with charities and schools. Downshall has been hosting open mornings once a month to showcase the project and network interested stakeholders into NELISA. Covid-19 inevitably brought an unexpected pause in the project, but fortnightly welfare calls have been made to stay in touch with the older adults, while the DIG operations team have used the opportunity to recalibrate, reflect and make improvements for the postCovid world.

We look forward to spreading the word nationally with the help of the RCPsych and creating a resource hub and forum to support others in setting up similar projects.

Our vision is for intergenerational provision to become familiar across the country and for local authorities to use this colocational, cross-sector model throughout education and social care. It is a win-win, costsaving solution to the social care crisis we are facing. n

How day centres are unlocking lockdown

References Bowling A (2009) The Psychometric Properties of the Older People’s Quality of Life Questionnaire, Compared with the CASP-19 and the WHOQOL-OLD. Current Gerontology and Geriatrics Research 2009: 298950 Burke S (2019) The Next Generation: How intergenerational Interaction improves life chances of children and young people.

Happisburgh: United for All Ages. www.unitedforallages.com Galbraith B, Larkin H, Moorthouse A, Oomen T (2015) Intergenerational Programs for Persons with Dementia: A Scoping Review. Journal of Gerontological Social Work 58(4) 357–378.

Giraudeau C, Bailly N (2019) Intergenerational programs: What can school-age children and older people expect from them? A systematic review. European Journal of Ageing 16(3) 363–376.

14 The Journal of Dementia Care

Day centres shut their doors during lockdown, depriving people of social contact and support. But the practicalities of reopening have to be carefully considered, say Katharine Orellana, Kritika Samsi and Jill Manthorpe, who have produced guidance on “unlocking lockdown” ay centres for people living with dementia closed to regular users as the impact of the coronavirus pandemic unfolded and lockdown was announced in March. Because adult day centres are not a regulated service in England, we don’t know how many people were affected.

But there is strong evidence that attending a day centre assists in maintaining quality of life and can be helpful to people attending them and to family carers who get a break.

While some studies mention improvements in cognitive functioning (e.g. Honjo et al 2020) from attending a day centre, others point more to the potential for them to help people live well with dementia (e.g. Rokstad et al 2019).

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Many different factors The practicalities of reopening have been carefully considered as centres make decisions on what needs to be done. Because there are many different types of day centres, what they need to do is very dependent on many factors.

Some are purpose-built with strong support from local authority commissioners of adult social care, whereas others operate in the voluntary n Katharine Orellana is postdoctoral fellow, Kritika Samsi is research fellow and Jill Manthorpe is director, all at the NIHR Applied Research Collaborative (ARC) South London, King’s College London.

sector, take place in village halls or community centres, and, although they may have some local authority funding, are more reliant on volunteers and payments from people attending.

All providers have had to think about the specifics of their own activities. As every setting is different, they are having to use their professional judgement, and take account of public health guidance to maximise safety but also wellbeing for everyone. There are matters such as infection control, communications, supporting staff and volunteers, and finances to consider.

For people with dementia, there are added complications but important among them are their wishes and wellbeing.

Lockdown for them may have been a mixed picture of stress but also familiarity, kindness and activity, on one hand, or worsening symptoms and unmet needs on the other.

While some day centre staff have been able to keep in touch with centre users by phoning them up in regular welfare calls, this may have been more of a support to family carers. For others, this link may have been lost.

Resource for managers At the end of June, we produced a two-part Helping adult day centres to ‘unlock lockdown’ resource for day centre staff, particularly managers, addressing practical but also more

November/December 2020 Vol 28 No 6

reflective elements. There is no shortage of general guidance about Covid-19 but most of this has not covered day centre operations. We were pleased to learn that our resource was quickly taken up and described as very useful to day centre managers.

Reflection and learning Part one of the resource covers the practicalities of organisation, while part two prompts reflection on what happened during lockdown, the process of moving forwards if that is what is needed, and any learning that will be helpful in the future.

Individual sections can be completed according to the stage in the recovery journey a manager of a day centre, its staff group, or its trustees feel has been reached.

For example, there will be some centres where former attendees have died. How will staff and volunteers be told about this and can the centre remember them in some way?

Staff and volunteers may also have been affected – and may wish to move on to new activities or be keen to return.

In many centres their shared activities – meals, singing, crafts and so on – are carried out in company and relationships are built up over time. We are suggesting the importance of attention to these matters, not just infection control and distancing.

Of course, infection control is essential and in dementia

services of all sorts decisions about this and other new imperatives are being made as part of risk management. Take, for example, the comfort given by soft items of play or favourite dolls, warm covers, and tactile objects that are often to be found in a dementia day centre. These all may be important to individuals’ sense of security and wellbeing, but they must be weighed in the scales against infection control.

Walking a tightrope There is much room for sharing between dementia services on how to walk the tightrope between safety and overly clinical environments and practices. In care homes, the restriction of visitors has been realised as sometimes so great as to be potentially harmful and homes have been thinking carefully about ways in which loneliness and separation from relatives can be reduced.

For day centres, other feelings may emerge, and staff have had to work out how to give family members confidence that their relative is as safe as possible and able to enjoy themselves at the same time. Prior to Covid-19, several research studies noted that family carers benefited not just from the break but that attendance could often have a positive impact on the relationship between them and the person with dementia (Tretteteig et al 2017).

No-one should overlook the financial implications of Covid-19 for social care

services, and there have been many worries about financial sustainability among home care and care home providers.

In the voluntary sector income from shops and other fundraising has dropped considerably, yet it often underwrites local community services such as lunch clubs and day centres. While some local authorities have made agreements about transitional funding, it should be carefully considered for the long-term.

We argue that day centres can and should be part of the nation’s recovery from coronavirus. We hope that the twin threads of resetting them – organisational and relationship-focussed – are taken up together.

Link to day centre resource www.kcl.ac.uk/scwru/res/ar c-sl/unlock-lockdown n Acknowledgements and disclaimer Katharine Orellana, Kritika Samsi and Jill Manthorpe are funded by the National Institute for Health Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. The views expressed in this publication are those of the authors and not necessarily those of the NIHR, the NHS or the Department of Health and Social Care. They are grateful to all those who advised on the Unlocking Lockdown resource.

References Honjo Y, Ide K, Takechi H (2020) Use of day services improved cognitive function in patients with Alzheimer’s disease.

Psychogeriatrics, first published online 5 May. Rokstad AMM, McCabe L, Robertson JM, Strandenaes MG et al (2019) Day Care for People with Dementia: A Qualitative Study Comparing Experiences from Norway and Scotland. Dementia 18(4) 1393-1409.

Tretteteig S, Vatne S, Rokstad AMM (2017) The influence of day care centres designed for people with dementia on family caregivers – a qualitative study. BMC Geriatrics 17(1) 5.

PERSPECTIVES Balancing the needs of the person with the needs of the service will be hard, but never more important

n Mark Ivory is Editor of the Journal of Dementia Care

By Mark Ivory

While cases of coronavirus have been rising fast across the UK as a whole, there are still reasons to think (at least at the time of writing) that the kinds of mortality figures seen in the care sector at the outset of the crisis can be avoided. According to the Office for National Statistics, up to the end of September care homes had fewer deaths than normal at that time of year.

We all know how quickly the situation can change, especially given that mortality data track upwards a month or so after initial infection data, but it is to be hoped that the additional £546 milliion for the Infection Control Fund, free PPE and the strict rules on movement into and between care homes set out in the government’s adult social care winter plan for England have the desired effect.

The Care Quality Commission (CQC), which has been carrying out infection, prevention and control (IPC) inspections, sounded reassuring on 9 October: “Most care providers that we have inspected have demonstrated good practice which we will continue to highlight through regular publications - however, where we have concerns, we can and will take swift action,” said chief inspector of adult social care Kate Terroni.

But none of this can disguise the fact that there will be some exceptionally tricky issues on which to decide in the coming months. Care home visits by residents’ relatives are a case in point.

As Care England chief executive Professor Martin Green, who represents care homes, says in our JDC Asks debate on the subject (p10): “We have had to make the unimaginable choice between visiting rights and protecting lives.”

It is not surprising that many care homes, all too aware of the potential impact of Covid-19, have come down on the side of caution. But John’s Campaign and others are right to point out the detriment to people with dementia if they receive no family visits, such as weight loss, deteriorating health, and behavioural change.

Care homes will not be able to avoid negotiating this knife edge.

The CQC says its inspectors will expect them to have discussed family visits as part of individual care plans, including “considering whether residents have exceptional circumstances to consider in those plans.” Instead of blanket policies, visiting arrangements will have to be person-centred and recognise how identity and wellbeing often depend on family relationships.

Nowhere is this person-centred approach more necessary than in “do not attempt cardiopulmonary resuscitation” (DNACPR) decisions. Earlier in the year some care homes were told that all of their residents would be made subject to DNACPR orders without individual consent. It effectively deprived residents of hospital care when they needed it.

A review is being conducted “at pace” by the CQC, which is clear that advance care plans should be made on an individual basis.

But keeping an eye on the needs of the person rather than the needs of the service will be hard to do, although never more important.

Vol 28 No 6 November/December 2020 The Journal of Dementia Care 15

he Covid-19 crisis has created a particularly frightening reality for the UK’s 700,000 unpaid carers of people living with dementia and urgent action is needed to address the many challenges they face during the pandemic and beyond.

Unpaid carers – usually family or friends of the person with dementia – are the largest “workforce” in dementia care, saving the economy at least £13.9 billion a year. Without these carers the whole care economy would simply implode.

So it is vital that their contribution is recognised and respected and that they are treated as equal partners with professionals and as key workers. Together in Dementia Everyday (tide) is a UK-wide charity focusing exclusively on ensuring that carers of people with dementia use their lived experiences and have their voices heard so that they can influence policy, research and practice.

Coronavirus has already had a profound impact on them, as tide has heard at first hand, and it is also casting a long shadow that will extend far into the future.

Many of the challenges all of us have faced have been magnified for unpaid carers.

Our involvement with them has highlighted daily hardships summed up in their comments to us, quoted below.

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Invisible and inaudible Carers often feel “invisible and inaudible” as individuals in their own right, reporting that they don’t feel valued or supported. Here are two typical comments made to us: We know that some people with dementia can hide their condition as this is an invisible disease, and if they’re in a familiar environment then people with dementia can sometimes carry on a conversation and fool even family members that they’re ok. It’s a shame that the GP n Anna Gaughan is chief executive of tide (Together in Dementia Everyday).

High time to respect carers as equals Government and policymakers must act now on the needs of family carers if they are to meet the many challenges they face.

Anna Gaughan says it is time to treat unpaid carers as key workers cannot take what the carer is saying seriously.

When caring comes to an end you’re left to just get on with it, with no job, or money as all your benefits would be stopped immediately. Carers have no support when they lose their loved ones and they can feel lost and alone – invisible.

These feelings can be acutely felt by carers of people

with younger onset and rarer dementias. They report that they are not being listened to at the point of diagnosis and are not recognised as equal partners, even though they know the person better than anyone: It can take a long time due to the age of the person as it is generally considered that they are too young to have memory

Implications for policy and practice Mandatory recording in GP practices A systematic process is urgently needed in all four UK countries to identify carers of people with dementia at a GP practice level.

Their “invisibility and inaudibility” as a group cannot continue.

Once a register of family and friends carers is in place, a concerted effort can be made to reach out to them to ensure that their needs are assessed and met.

Carers assessments Carers have a right to have their needs assessed in line with social care legislation across the UK. Before the pandemic, many carers were being offered carers assessments, but legislation and guidance must reinforce the fact that this right has not changed as a result of Covid-19. Local authorities should be monitored to ensure proper assessments are undertaken.

Carers should be key workers Given that carers of people with dementia make up the largest dementia “workforce”, it is vital that their contribution is respected and that they are recognised as key workers and equal partners alongside professional staff in Covid-19 policy guidance.

Grief and bereavement Further focused work is required to understand the extent of the impact of grief and bereavement on carers during the pandemic.

A strategy and resources for the voluntary sector should be put in place to address these consequences.

All-Party Parliamentary Group Given the disportionate impact of dementia and Covid-19 on BAME communities,tide is calling for an All-Party Parliamentary Group (APPG) to be convened to explore these issues and make recommendations for action.

16 The Journal of Dementia Care November/December 2020 Vol 28 No 6

problems and so these problems can be put down to various other reasons like having a stressful job.

In the meantime, we don’t have enough money. Carers have to give up work and [are] considerably worse off.

I don’t want to be seen as an angry bereaved wife, I just want to get my point across, explain what they [employers] could have done differently so no one else will have to go through what my husband and I experienced. [I have] [been] fobbed off by our GP, who said that my husband wasn’t old enough to have dementia! I want to use our experience as a force for change.

BAME carers Feeling invisible is not a new challenge for carers from black, Asian and ethnic minority (BAME) communities. There is overwhelming evidence of the disproportionate impact that Covid-19 has had on them (Public Health England 2020).

BAME groups suffer from lack of access to specifically tailored, culturally appropriate support due to cultural misconceptions, language difficulties, stigma-related issues and discrimination. For far too long the diverse voices of BAME carers haven’t been heard, playing into the false narrative that “they look after their own”. We have heard comments like these from south Asian carers: Fortunately…I was lucky that I found my way…due to understanding and general knowledge. But when the chips are down even your own [family] turn their back on you. I feel I’ve been under lockdown since 2012.

The role has its ups and downs, more downs than ups, because you don’t want to see your loved ones in that state…

It’s all well and good for those with big houses, and expansive gardens who can self-isolate and remain home with relative ease and comfort. But do we think about those carers and people living with dementia in a multigenerational household, who live in small terraced, two-up twodown homes with a tiny backyard. Where do they go for a break – just think about their mental exhaustion?

Carer burnout Most carers are now giving more care than before as social care providers have withdrawn support. Many have reported concerns about home care workers visiting without adequate personal protective equipment (PPE), leading some carers to cut down on the help they receive and place yet more strain on themselves.

Caring can have a negative effect on a carer’s physical health (for 61% of carers, according to a recent survey) and mental wellbeing (72%) (Carers UK 2018). This is likely to worsen as they worry about coping in an uncertain and demanding situation, not knowing when support services will reopen and in what form.

Will they be able to continue caring safely and effectively while maintaining their own health and wellbeing? Could they lose their right to paid support and will they face significant barriers when reapplying for care packages lost during lockdown? When will they be receive a local authority needs assessment?

Many carers feel neglected and forgotten, as these concerns show:

I’ve been unable to attend to my mother’s personal care needs [as care calls ceased several weeks ago], unable to assist my father to care for her. [I was] unable to offer the emotional support my father needs or respite for him. My mother has lost all motivation or direction since the day centre was the focal point of her week prior to this. She has rapidly declined.

As recently reported the distribution of PPE especially within social care has been a shambles…

I had a phone call from the social worker saying my mum’s case was being closed. I had such a struggle to get an appointed social worker. (I) couldn’t believe, especially in these circumstances, that support has been withdrawn.

When the need for support arose, it very quickly became apparent that there was NO emergency care or support available and we were left to fend for ourselves.

Relatives in care homes Enforced separation between families and their relatives in care homes during the pandemic has had particularly damaging consequences for those residents with dementia.

Without visits from family carers, the cognitive abilities of a person with dementia can deteriorate rapidly and the effects may even be fatal. The sharp spike in excess deaths in care homes was not just caused by the virus; there was also a 52% rise in noncoronavirus-related deaths for people with dementia.

The blanket restriction on carers visiting their relatives in care homes was not just cruel and unnecessary, it was a

Above left: Dementia awareness session at Pakeezah Ladies Group at St. Andrews Church, Rochdale. In the foreground is Shahid Mohammed, BAME carer involvement lead and project manager for tide’s Dementia Dekh Bhaal project. Above right: Razia Shamim, chair of the Pakeezah group, shows off a tide leaflet.

violation of their fundamental rights under the Human Rights Act 1998 (e.g. respect for private and family life) and the UN Convention on the Rights of Persons with Disabilities (e.g. living independently and being included in the community). Yet it was the legal duty of government and care providers to uphold these rights. As one carer told us: Like many others we are left in limbo as I believe the care home sector is simply not set up to allow families to stay connected unless we are able to visit in person.

Carers are not merely visitors, but essential key workers in the support and care network of the person living with dementia.

Grief and bereavement Carers have reported feelings of grief and bereavement arising from inadequate endof-life care, inability to visit relatives, and the limited presence of family and friends at funerals. We anticipate long-

term mental health implications, such as posttraumatic stress disorder (PTSD) as people are unable to process grief in the usual way.

A former carer who had recently lost his wife told us: I am finding the self-isolation depressing as I have to deal with my bereavement and isolation. I fear for my mental health at times.

The Covid-19 crisis should be a turning point in how we recognise, respect and work with carers as equals to professionals. Government, policymakers and practitioners must act now (see box). Tide, on behalf of all carers of people with dementia, urges all parties to work together to drive urgent action on the key priorities I have outlined. n References Carers UK (2018) Supporting Carers to be Healthy and Connected: Research Summary for Carers Week 2018. London: Carers UK. Public Health England (2020) Beyond the data: Understanding the impact of COVID19 on BAME groups. London: PHE.

Vol 28 No 6 November/December 2020 The Journal of Dementia Care 17

How hard is waving? y lockdown started early. If you remember, Boris Johnson closed theatres the week before national lockdown, which cut short a tour of our production Dead Good. It had two years’ research behind it and explored life-limiting illness and how to live life as fully as possible until the final breath.

But as media messages flooded the news that Covid-19 meant people were often without their nearest and dearest when they died, because families couldn't be allowed in, the world felt extraordinarily cruel. Our production felt out of sync with the new times.

I was very emotional right at the beginning. The thing that kept me most sane during our one hour’s exercise was walking the dog around the block to my friends’ house just to see their faces from a distance, and chat through the window for five minutes. And, on the way, we always passed my local care home. This is what happened....

M

Day 1 I spotted a lady sitting alone in her care home room, watching the TV. I waved, but she didn't notice me, so I waved with more enthusiasm, moving to find the best position to catch her eye. My kids were embarrassed by me and walked on. And then she spotted me.

She clearly didn't recognise me... well, we'd never met! But she tentatively waved back.

Day 2 Off we went again to our friends... I walked past the care home. This time the lady in the chair spotted me immediately and it was as if she knew the drill. She waved back straightaway. We waved hello, then waved goodbye.

Day 3 She knew me straightaway. She tried desperately hard to get

Vamos Theatre was commissioned by the BBC during lockdown to make four short films about communicating with people in care homes. Artistic director Rachael Savage tells the true story behind the inspiration for the films

liked it when he waved... my boy seemed to like it too.

Day 6 Hazel is thrilled to see me.

I blow a kiss. She blows a kiss back. My heart sings.

Day 7 Today I’m walking with my whole family. They all wave.

Hazel looks interested, perhaps a little confused, but happy for the attention. I pick up Norah... she's always pleased to see Norah. Norah waves. Hazel laughs. We all laugh.

Day 8 Hazel has a carer in her room.

The carer doesn't recognise me as family. I feel like a mad woman trying to explain, shouting through a tiny window that “I'm a new friend.” Hazel looks confused and believes the carer who's asking, “Who are you? I don't recognise you.” I walk on, feeling like an intruder.

Day 9 Hazel is asleep in her chair. My kids say not to wake her. I disagree and try to. I fail.

Day 10 I drop a card off to Hazel: “Hello Hazel, I'm the lady who comes to wave. I'm called Rachael. And my dog's name is Norah.” I ask my daughter to draw the dog in the corner – she does a better job than I could.

Top: Joy from Vamos Theatre. Above: Rachael Savage leads a workshop

up, which made me panic. I need not have worried – she reached for her frame and came closer to the window. I picked up my dog, Norah. We waved, Norah waved.

Day 4 She couldn't see me, I hollered, "Yoo-hoo, Yoo-hoo". A carer came to an upstairs window. I worried I was in trouble. I need not have worried. “Do you know Hazel?” she asked.

“Not exactly, but we’re making friends, she likes my dog. I'm glad to have learnt her name. Is she ok on her feet? I'm worried she might fall over getting up to the window.”

“No, Hazel's good on her feet, she's really independent.”

Day 5 Hazel spotted me immediately. She jumped up to wave. I was with my son (handsome young man) – she

18 The Journal of Dementia Care November/December 2020 Vol 28 No 6

Day 11 No sign of Hazel. No sign of the card. Her chair is empty.

Day 12 It’s a grey wet day. I'm having a bad one. My husband says, “Tea will be ready in 10 minutes. Go and walk the dog; go and see Hazel.” I go. As usual, Hazel is sitting alone, TV on. She looks kind of grey too.

But then she spots me, and the n Rachael Savage is artistic director at Vamos Theatre Company

grey fades away in a huge wave. I hold my hand out to show it's raining. Hazel nods.

Norah's getting wet, she hates the rain. I don’t care. I walk home smiling.

Day 13 Hazel can't hear me, she can't see me. She’s rubbing her head. I really holler. I get a response from a man upstairs.

“Hello?” “Hello!” “What's your face like?” “Lovely, really very lovely.” I respond, laughing at myself. Hazel still doesn't see me.

Day 14 Hazel's had her hair done. She looks like a different woman.

And she’s dressed. I forgot to say, I usually go in the evening when she’s a little lady in a nightie. Today, she’s spruced up.

I put my thumbs up, nodding.

She does the same back. I hope she's got visitors coming. But how can that be, the home is in total lockdown? And then I thought, could family wave through her window? I'm guessing some do....

The next week we got a BBC commission based on the idea which came to me of encouraging people to wave at residents in care homes, even waving to people shielding in their own home. So, “How Hard is Waving?” was born. It's about one family; four short films covering four weeks in lockdown and how the family connects over video calls. But for me, it was all inspired by my new friend, Hazel.

Day 107 I still go to wave. Hazel always rewards me by waving back.

Often, she blows the first kiss.

She doesn't get up any more.

How Hard is Waving?

All four films can be found by searching “Culture in Quarantine” on BBC iPlayer and scrolling through the films in this section. And take part in Vamos Theatre’s new "Wednesday Wave" by going to www.vamostheatre.co.uk, where you will find a project page and poster. n

Arts and dementia: shaping the future It is widely believed that the arts can improve quality of life in care, but more hard evidence is needed. Ruby Swift and Karen Gray discuss research to build up the evidence base and an event to assist with putting it into practice

Left to right: Professor Dawn Brooker, Becky Dowson, Ruby Swift and Karen Gray (TAnDem PhD students), Professor Tracey Williamson

he value of arts interventions for people with dementia has been well attested, not least in the Journal of Dementia Care, but how should we be evidencing their value? In 2015, the Universities of Worcester and Nottingham formed The Arts and Dementia (TAnDem) Doctoral Training Centre (DTC) to build up the evidence base.

TAnDem DTC has supported six PhD students to research various aspects of the arts and dementia. Their research has encompassed creative activities for people with all stages of dementia and their family and professional caregivers in care home, community and home settings. Two of the students have been awarded their doctorates, and the remaining four are due to join them by the end of 2020.

As one of eight doctoral training centres funded by Alzheimer’s Society, TAnDem’s research seeks to address the growing need to understand the role arts interventions such as dance, music, poetry and painting can play in the lives and care of people with dementia. It is contributing to

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an evidence base which will help people living and working with dementia to make informed choices about arts and creative activities.

While it is widely believed that the arts can enhance quality of life, further evidence is necessary so as to attract more funding for provision. Knowing how to produce clear, good quality evidence is essential to this effort, and TAnDem research into the language and evaluation of arts interventions will potentially help.

Round table event To gain understanding of how TAnDem research might effectively be translated into practice, the Association for Dementia Studies (ADS) hosted a round table event in Worcester last December.

It was attended by 35 people working in various roles across the arts, care, research and education, including artists, arts therapists, arts managers, occupational therapists, care workers, care professionals, researchers and educators.

ADS director Professor Dawn Brooker opened the day with a

friendly icebreaker, handing the baton to educators from the University of Worcester to introduce links between learning and practice. Course leaders shared information on courses such as the Postgraduate Certificate in Person-Centred Dementia Studies.

Research presentations followed from five of the TAnDem students, accompanied by a discussion of the topics covered, which was facilitated by Tracey Williamson, Dementia Carers Count professor of family care in dementia.

Findings from the TAnDem research were presented in the course of the round table.

Among the most significant is that care staff are well placed to contribute towards creative activity, as they have knowledge of residents and can promote sustainability through the upskilling and training of activity coordinators.

For arts practitioners in care homes, key attributes were the ability to: • create clear and compelling opportunities for engagement • remain flexible about what can happen during an arts session • value all forms of engagement equally • keep an open mind and avoid assumptions about residents • avoid placing limitations on or disempowering residents.

Research on the topic of music covered community ‰ n Ruby Swift is a doctoral student with the University of Worcester and Karen Gray is a postdoctoral research associate with the University of Leeds.

Vol 28 No 6 November/December 2020 The Journal of Dementia Care 19

Association for Dementia Studies

Person-Centred Dementia Studies Part-time Postgraduate Certificate & Expert Practice Award Discussion at the event, facilitated by Professor Tracey Williamson

FULLY ONLINE Developed by a team with a proven track record in delivering in-depth, effective evidence based programmes for care homes, hospitals, communities and housing.

Gain the expertise to support people to live well with dementia Modules available to study singly or in combination:

January 2021

Expert Practice in Delivering Person-Centred Dementia Care Engagement and Empowerment in Dementia Studies Dementia in the Family Context The closing date for applications for courses/modules starting in †“š†—ž Č?Č›Č?Čœ is ”›Š’‡Š— Ȟțth 2020 Š™†Ž‘˜ †›†Ž‘†‡‘Š ˜””“ ‹”— ™Â?Š Č?Č›Č?Čœ ”˜™Œ—†‰š†™Š Š—™Ž‹Žˆ†™Š Ž“ Š—˜”“ǂ Š“™—Š‰ Š’Š“™Ž† ™š‰ŽŠ˜ Interested?

Visit: www.worcester.ac.uk/dementia or Âœww.worcester.ac.uk/dementia/pg-cert Email: dementia@worc.ac.uk

‰group singing for people with dementia and sharing music in their caring relationships at home. One project looked at a community singing group led by a novice facilitator, which was observed to encourage members to feel more comfortable and to benefit from guidance written by music therapists.

For people with dementia and family carers living at home, listening to and making music was observed to offer opportunities for new shared experiences, forms of expression and creativity.

When it came to evaluating arts interventions, researchers explored rigorous qualitative approaches making use of written or verbal accounts and reflective practice. It was highlighted how evaluators need to learn from the skills and experience of people with dementia, artists and health and care staff, and that artists and arts organisations need to understand the benefits of evaluating their work and what is involved.

Collaboration and partnership across disciplines and sectors was felt to be vital, as were shared communities of practice and languages for communication.

Notes were taken of discussions throughout the day and thematically analysed, along with the event presentations. Findings from this analysis indicated the following needs for arts and dementia practice: • better understanding of the practicalities and complexities of integrating the arts into dementia care practice • practical training and

20 The Journal of Dementia Care November/December 2020 Vol 28 No 6

educational support to build knowledge of dementia, arts and creativity for people with dementia, and evaluative skills • provision that enables connection, collaboration and sharing of resources.

A full report on the round table has been produced by TAnDem PhD students which can be found on the University of Worcester website (Gray et al 2020). Among other things, it makes a series of recommendations for actions to be taken forward by the university: • integration of arts and creative activities into ADS education programmes and resources in person-centred dementia care • integration of arts and dementia mentoring and placements for students into relevant University of Worcester courses • ADS to seek opportunities for research and consultancy for care home managers and group leaders to support them to integrate arts and creative practice.

We hope that acting on these recommendations will help to develop the arts in dementia care by translating TAnDem research into practice and education. The PhD students are taking the next steps towards meeting the needs they have identified, and more findings and publications are expected. As they finish their studies, the legacy of TAnDem research is just beginning.n References Gray K, Swift R, Brooker D (2020) The Arts and Dementia: Shaping the Future. Worcester: Association for Dementia Studies.

A special safe environment to calm and minimise risk Finding the right response to stress and distress behaviours on a hospital ward requires careful planning. Julie Young and colleagues decided that a specially designed safe environment adjacent to the ward could be the way forward. e work on a hospital ward which is a 10bedded assessment unit for older people with dementia who are admitted for care and treatment to enable them to return to the community. Our approach emphasises psychosocial and environmental interventions, including where stress and distress behaviours are concerned. But we wanted to find out how we could do more to adapt the ward environment to help these patients.

We will share findings from a review of our care plans, which highlighted the use of the environment on the ward as part of psychosocial interventions. We will also say how this review has influenced our practice.

The ward uses a needs-led model to assess people with dementia, the shared understanding being that they are attempting to communicate an unmet need through their behaviour (James & Jackman 2017). It considers biopsychosocial factors and involves gathering information from the person’s life story and personality as well as taking into account the physical and social environment the person is living in.

This holistic assessment enables care plans to be developed to meet the identified needs of the person with a view to reducing their behaviours that challenge and managing the risk associated with these behaviours. It allows us to evaluate the care we are providing as the basis of evidencebased decisions on when the patient is ready for discharge and which community setting would best support them.

Guidelines from the National Institute for Health and Care Excellence (NICE 2018) stress the role of non-pharmacological treatments for distress behaviour, which are described as follows:

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Psychosocial and environmental interventions, and personalised activities to promote engagement, pleasure and interest. These might include calming and distracting an agitated person, environmental management (for example, adjusting temperature, noise and lighting) and activities like arts and crafts, movement to music and accompanied walks.

All patients on this ward have care plans to reflect their needs and how these are met. Our review of these care plans was designed to establish the extent to which the environment was being used and if it was helpful in meeting the needs of the person. We wanted to ensure that the

NICE guidelines were being adhered to where possible and to improve the provision of a safe environment for patients on the ward.

Our findings suggest that the NICE guidelines were being followed and that all care plans included interventions using the physical environment (e.g. recommending a quiet environment, a walk outside, having easy access to bedroom and toilet, meals to be offered where the person could sit looking out of the window). It was recognised in care plans that, as a person’s behaviour escalated, the environment might have a role in de-escalation and managing the risks (e.g. recommending staff encourage the patient to go to a quieter area of the ward, use the garden or walk in the corridors). Our aim is always to adopt this kind of approach in the first instance rather than physical restraint or pharmacological options.

Safe environment A small number of patients can require an intervention using a safe environment when everything else has been tried and found not to work. A safe environment is specifically needed in these cases when the usual non-pharmacological interventions and environmental changes have failed to de-escalate the person’s behaviour and pharmacological interventions have failed too.

As we have found, the potential of a hospital ward to provide a safe environment for someone with dementia can be limited. Wards seldom ‰

Julie Young is an advanced practitioner, Northumberland County Behaviour Support Service, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust; Gareth Luce is a psychology trainee, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust; and Robert Roxborough is a clinical lead, Woodhorn Ward, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust.

For further information, email julie.young@cntw. nhs.uk

Practice recommendations • A robust care plan should be devised specific to the person with dementia depicting their usual presentation, their needs and how to meet their needs.

• Critical indicators should be identified on when to consider segregation or use of a safe environment • Specific signs of escalating behaviour should be made clear • Bespoke techniques should be set out to aid de-escalation and minimise risks specific to the person • The care plan should also list known signs of the person calming and when to conclude segregation.

Vol 28 No 6 November/December 2020

The Journal of Dementia Care 21

Proposed design for the segregation area on our ward, provided by the sensory design company ROMPA

References CADTH (2017) Environmental Restraints for Dementia Patients in Long-Term Care Facilities: Clinical Effectiveness and Guidelines, in Hatley D & Cookson M (2019) Hatley D, Cookson M (2019) Seclusion Policy.

Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust.

James IA, Jackman L (2017) Understanding Behaviour in Dementia that Challenges: A guide to assessment and treatment (second edition). London: Jessica Kingsley.

Kendall N (2019) Namaste Care for People Living with Advanced Dementia: A Practical Guide for Carers and Professionals.

London: Jessica Kingsley Publishers.

McCartney S, Percival H (2019) Seclusion Policy, Practice Guidance Note Long-term Segregation.

Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust.

Morrison RS, Sui AL (2000) A Comparison of Pain and Its Treatment ‰

‰have a safe, low stimulus environment appropriate for the needs of a patient who is distressed and demonstrating aggression or harming themselves and spending time on the floor.

In these circumstances, segregation or seclusion would often be assessed as the least restrictive option, segregation being when the person cannot mix freely with other patients and seclusion being when they are nursed on their own in a separate space from other patients. Patients on our ward are detained under the Mental Health Act 1983 but staff still carry out capacity assessments and make best interests decisions in line with the Mental Capacity Act 2005 when considering segregation or seclusion.

An area poorly understood We investigated further and came to the conclusion that the use of the environment as a risk management intervention for people with dementia is poorly understood. For instance, the Canadian Agency for Drugs and Technologies in Health (CADTH), an independent organisation providing health care workers with objective evidence to inform their decision-making, found “no relevant evidence regarding the use of environmental restraints for geriatric patients with dementia (CADTH 2017, p3).

In another study, where guidelines for the management of aggression in dementia were reviewed, it was discovered that only eight of 16 guidelines mentioned restrictive practice and of those “no guideline covered this topic in detail.”

(Vickland et al 2012, p 1129). Moreover, NICE guidance on management of violence and aggression in dementia relates only to pharmacological interventions (NICE 2015).

Hospitals may have seclusion suites, but these are not located on older people’s wards .

Transporting someone with dementia in a high state of distress to an unfamiliar environment can be detrimental and actually increase their confusion and distress (Ray et al 2015). The use of

22 The Journal of Dementia Care

November/December 2020 Vol 28 No 6

seclusion suites, which are necessarily confining and are rarely ideal if the person needs space to walk about, has to be closely monitored and reviewed.

Deciding whether a seclusion suite is needed for a person with dementia is beset by other problems too. Critical indicators of this need may be hard to predict, particularly given the fluctuation in presentation, levels of aggression, and the possibility of delirium (Trachsel et al 2015).

Repeated short periods of time in a low stimulus environment may be indicated, but this is difficult to accommodate where there are no bespoke facilities readily at hand. Nor will a seclusion suite meet the needs of an older person with other physical factors to consider, such as risk of pressure sores, physical frailty and poor spatial awareness.

Our case study (see box opposite) illustrates these difficulties and points to the possible advantages of having a segregated area on the ward. In this case a bespoke low stimulus environment was identified as most appropriate for meeting the needs of “John”, who was in a highly distressed state. We believe that our findings are representative of many people in a similar situation.

Nationally, there are very few bespoke safe environment facilities and policies to support this use for the person with dementia, the consequences of which can be distressing for patients, families and staff to manage. Yet, there is a wealth of literature attesting to the positive impact of designing environments with an understanding of the difficulties individuals with dementia are likely to experience (e.g. O’Malley et al 2017).

Such an approach would support the development of short-term segregation facilities based in a safe space on the ward, containing the risk to patients but allowing person-centred engagement with them by staff (James & Jackman 2017). A low stimulus safe environment can give

‰ in Advanced Dementia

Case study: segregation on the ward John, aged 78, was diagnosed with Alzheimer’s disease four years ago. He had a complex mental health history underlying his dementia and was susceptible to delirium. He had been admitted to the ward from a nursing home after aggression to staff, which was difficult to predict and could potentially cause significant harm to them and to residents.

While on the ward, he was placed on eyesight observation and had displayed physical and verbal aggression, assaulting staff and peers on numerous occasions. John’s mood was extremely changeable and episodes of aggression became more prolonged with attendant risks to other patients.

John’s main occupation was walking the corridors, although he liked to go into the garden with staff.

Because of his cognitive impairment he did not respond to de-escalation interventions involving verbal communication, which he often misinterpreted causing his aggression to increase.

He was unable to sit for long periods of time and, when he became tired, he could walk into walls and doorways. He needed support from staff at all times to try and keep him safe, but this could also increase his agitation. He would crawl along the hard floor and go to sleep on it, presenting a dilemma to staff about whether to let him rest or move him somewhere more comfortable due to the risk of injury and pressure sores.

We had a number of options for minimising risk to John: • Increase observations: this would have allowed two staff to be with him at all times and enable them to guide him away from others when upset.

However this could lead to staff injury as too many people around him could increase his agitation. patients time to calm down, when nonpharmacological interventions and medication have been ineffective, before they reintegrate with others on the ward.

Padded flooring should be there as an option for patients, like John, who habitually get down on to the floor, as well as for those who are physically unwell, suffer from delirium or have poor spatial awareness. Padded flooring would help to reduce pain, which increases agitation if left untreated (Morrison & Sui 2000).

A segregation area of this kind needs to be as dementia-friendly as possible and could also double up as a facility for “chilling out” and relaxation, perhaps involving a sensory approach to calming and engaging patients such as Namaste therapy (Kendal 2019).

Other possibilities for the segregation area would be: • locked door facilities • CCTV for observations • ability to take physical observations without entering room

• Provide crash mats and a bean bag: these would be placed in a quiet room for when John lay on the floor, but they may not always be effective as he might not lie on them and they could be a trip hazard.

• Use of seclusion: it could take a long time to reach the seclusion suite on secure transport, yet he might only need to be in it for a few minutes. John would not have understood the procedures for testing compliance with regulations and the space would be too confining.

• Segregation on the ward: Providing an area segregated from other patients could give him time and space to calm down and remain on the ward.

Discussion was needed with senior staff to facilitate this.

Outcome for John John was given a period of seclusion in the seclusion suite after a prolonged episode of agitation. Maintaining his safety on the ward while waiting for secure transport was extremely distressing for him. He remained in seclusion for several days, but when he returned to the ward it had made no difference to his behaviour and greatly increased distress for his family.

Following this period of seclusion a ward area was identified just for him which, if needed, could be utilised following guidelines from the NHS trust policy on segregation (McCartney & Percival 2019).

It involved closing some of the doors on the ward to reduce the risk of John coming into contact with other patients while he was distressed and displaying physical aggression. He did have space to walk and crash mats and a bean bag were available to him. The doors were opened when he calmed down.

• ability to play music into the room • ability to control the lighting and temperature • safe flooring and walls • light, safe objects that people can move and walk with • settee/chairs.

Operational guidelines would be needed to support this more flexible approach to highly restrictive practice, and care planning would be key (Hatley & Cookson 2019; Riahi et al 2016). It would be necessary to have a clear procedure for clinical practice, outlining training, guidelines and close auditing.

Our findings have been presented to our local business unit, which has approved the funding for such a facility on the ward. Quotes have been obtained, including from the company ROMPA (see photo, above left), and an area of the ward has been identified to provide such an environment. The ward team feel this will benefit the patients hugely and enable better use of the environment. n

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and Cognitively Intact Patients with Hip Fracture.

Journal of Pain and Symptom Management 19(4) 240–248.

National Institute for Health and Care Excellence (2015) Management of aggression, agitation and behavioural disturbances in dementia: carbamazepine. London: NICE. National Institute for Health and Care Excellence (2018) Dementia: assessment, management and support for people living with dementia and their carers.

London: NICE O’Malley M, Innes A, Wiener JM (2017) Decreasing spatial disorientation in carehome settings: How psychology can guide the development of dementia friendly design guidelines.

Dementia 16(3) 315-328.

Ray CA, Ingram V, CohenMansfield J (2015) Systematic review of planned care transitions for persons with dementia.

Neurodegenerative Disease Management 5(4) 317-331.

Riahi S, Thomson G, Duxbury J (2016) An integrative review exploring decision-making factors influencing mental health nurses in the use of restraint. Journal of Psychiatric and Mental Health Nursing 23(2) 116128.

Trachsel M, Hermann H, Biller-Andorno N (2015) Cognitive Fluctuations as a Challenge for the Assessment of DecisionMaking Capacity in Patients with Dementia.

American Journal of Alzheimer’s Disease & Other Dementias 30(4) 360-363.

Vickland V, Chilko N, Draper B, Low L-F et al (2012) Individualized guidelines for the management of aggression in dementia – Part 2: appraisal of current guidelines. International Psychogeriatrics, 24(7) 1125-1132.

The Journal of Dementia Care 23

How to maximise vision for the best quality of life Poor vision increases the risk of falls and makes it harder to take part in social activities. In the second of two articles on eyesight and dementia, Marianne Piano sets out ways to help people with dementia see the world as clearly as possible ow can care professionals help people with dementia see the world around them as clearly as possible?

In the last issue (Piano 2020) we looked at the ways dementia can interact with vision and the visual problems that people can face as a result. Knowing about these visual difficulties is the first step, but then the question becomes how best to tailor care so as to circumvent them.

Here, I will look at some helpful strategies to maximise vision for people living with dementia. While many of these may be simple common sense, my aim is to bring them together for easy reference as a coherent and comprehensive set of tips.

Poor vision can increase falls risk (Lord & Dayhew 2001) and affect psychosocial wellbeing by making it more challenging to engage with cognitively stimulating or social activities (Rogers & Langa 2010, Naël et al 2019, Fischer et al 2009).

Adopting strategies to maximise vision is therefore likely to have a positive impact on quality of life (Harithasan et al 2020, Brenowitz et al 2019, Fischer et al 2009).

H

Simple strategies Mark and monitor glasses Whether people with dementia have individual pairs of spectacles for reading and TV, or one pair for both, these should be marked for identification, e.g. by using engraving, nail polish, labels, or photographs in the care record. It helps to ensure the correct pair is worn for the correct activities regardless of who is delivering care.

Staff working on wards in NHS trusts and local health boards have access to the Bedside Vision Check (Royal College of Physicians 2017), a tool developed collaboratively by the college and professional bodies for eye care. This can be used by clinicians as a brief screening tool to obtain information about spectacle wear and flag vision problems for the attention of the medical team.

In care settings, the prevalence of

outdated or incorrect spectacle prescriptions is high. Care staff should ensure regular sight tests (see below) so that spectacles can be renewed where necessary.

Staff should also help people with dementia retain their own most recent glasses, especially as these are often specialised and costly. Old and outdated spectacles should be put away out of reach, so they do not inadvertently enter routine use.

Some people may stop wearing spectacles after a time and it is a good idea to give them encouragement and emphasise the benefits of wearing them.

Total resistance to spectacle wear should be notified to the optometrist, so that tests can be carried out with a view to alerting staff and families to the person’s functional level of vision.

Inspecting spectacle frames at least once a week is a worthwhile practice as central lens scratches or damage such as bending or missing nosepieces can affect comfortable wear. Such problems may impede vision yet be easily repaired.

Routine sight tests Routine sight tests are available once every two years for people under 70 years old and annually for people over 70. Anyone with a dementia diagnosis who cannot attend a high street optometry practice unaccompanied is entitled to a “domiciliary visit” at home at no extra cost. This is also the case for eye tests for care home residents.

Routine sight tests are vital for early detection and monitoring of age-related eye diseases, including cataract, agerelated macular degeneration and “silent” robbers of sight such as glaucoma. There are a number of ways optometrists can adapt their tests to rely less on direct input from the patient.

Similarly, there are adaptations which optometrists can make to ensure testing is dementia-friendly and the person living with dementia is able to take part in the tests as fully as possible. Notifying the

24 The Journal of Dementia Care November/December 2020 Vol 28 No 6

Marianne Piano is a clinical vision research fellow in the Department of Optometry and Vision Sciences, University of Melbourne, and the National Vision Research Institute, Australian College of Optometry

optometrist in advance that the person undergoing the test has dementia is very important. The College of Optometrists has a set of guidelines for dementiafriendly eye testing (2017), in which longer appointment slots can be provided to accommodate the required adaptations and ensure the test remains a positive and cooperative experience.

Optometrists can also use this appointment as an opportunity to review spectacle wear patterns and make changes if necessary. For example, wearers of multifocal lenses such as bifocals and varifocals, who must look through different segments of the lens depending on whether the activity is close-up or more distant, may find this more challenging as time goes on. If this is the case, it may be better to have two separate sets of glasses, say, one for reading and one for TV. Older wearers of multifocal lenses can be at greater risk of falls (Haran et al 2010) and can be helped by a prescription for two separate sets of glasses. But when a switch is made to separate spectacles for reading and distance, some extra support may be required from care staff to aid this transition and prompt use of the appropriate pair.

Be vigilant When staff routinely work with particular people, they acquire a sense of the way in which they enjoy their preferred activities. They should watch out for behavioural changes, such as greater uncertainty when mobilising, increased head or eye movements,

Simple strategies to maximise vision • Promote the role of the routine sight test in early diagnosis of treatable sight loss, for monitoring and intervention • Communicate a dementia diagnosis to the optometrist to allow them to adapt their testing and set a longer appointment in line with the College of Optometrists’ dementiafriendly guidelines • Log and mark spectacles and how they are worn, inspect them regularly for damage or poor fit, and keep family and optometrist in the loop about engagement with spectacle wear, so type of spectacles can be adjusted if necessary • Ensure other support paths are in place, such as a Referral of Vision Impairment to promote access to low vision services and occupational therapy • Be vigilant for changes in visual behaviours, which may indicate something is not right and a sight test may be needed • Tailor the visual environment, activities and care to accommodate known sight problems or visual processing difficulties, so people living with dementia and sight loss can participate as fully as possible.

missing objects when trying to touch them, a loss of interest in visual materials, or mounting frustration when trying to do a visual task.

If the person with dementia struggles to communicate, behavioural changes may be the only indicators that something is wrong. They can then be referred for an eye test to establish whether sight problems are the root cause.

Ensure right support Ophthalmologists can make a “Referral of Vision Impairment” for a social care needs assessment, even without the person having met the traditional criteria for blind or partially sighted registration.

It is a good idea to get this assessment done early as it can open the door to sight loss services, which can furnish strategies for coping with sight loss and provide low vision aids.

Among those who can benefit are people with posterior cortical atrophy (PCA) and visual processing problems related to Alzheimer’s disease.

Ophthalmologists can be accessed via a GP or optometrist referral.

Simple, well-lit environment Complex patterns, clutter, reflections and shadows can be hard to make sense of for people with dementia who have visual processing difficulties. Simple strategies can reduce this impact and improve their ability to interact with what they see.

Suitable strategies are wearing plain coloured clothes and avoiding use of complex patterns in room décor; ensuring that objects to be interacted with are placed individually with space around them and not stacked or closely clustered; and making use of things like colour contrasts so that objects stand out from the

background (Dunne et al 2004).

Remember too the centrality of good lighting in mitigating the potential effect of poorly lit environments for someone with dementia (Salobrar-García et al 2019), another prominent risk factor for falls (Lord & Dayhew 2001, Saftari & Kwon 2018).

Tailor activities Sight loss and visual processing difficulties can compromise participation in activities and engagement with care.

But provision of both care and activities can be adapted or substituted to accommodate these issues.

After the sight test, an optometrist will be able to advise on the level of vision someone with dementia has for day-today activities – their “functional vision” – and the way in which particular visual problems may affect activities.

Occupational therapists can also give useful tips on how approaches to care and activities can be reconfigured with this information in mind.

I will mention just a few of these tips to give a sense of what is involved. If a person living with dementia has limited perceptual awareness outside of their upper central visual field, carers and family can approach from the front or speak as they approach to draw attention.

Experimenting with print sizes, increased text spacing and early introduction of low vision aids, such as typoscopes or magnifiers to isolate or enlarge text, can help to keep people with dementia engaged with the written word.

Physical and creative activities can also be adapted holistically, e.g. use of book stands, portable lighting or easels to change the height, angle or illumination of an art surface, selection of matt paper to minimise reflections, and thoughtful

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positioning of the person during exercise activities to make the most of their useful field of view.

Conclusion Treatable sight loss is more prevalent among people with dementia than most other groups, and they can experience a variety of visual processing difficulties if damage to the relevant pathways in the brain occurs. It can have a major effect on activities of daily living and the ability to engage with care.

But dementia care professionals can do a great deal to counter some of these effects.

By making the necessary referrals and implementing some simple strategies, they can achieve much to improve quality of life among those they support. n References Brenowitz WD, Kaup AR, Lin FR, Yaffe K (2019) Multiple sensory impairment is associated with increased risk of dementia among black and white older adults. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences 74(6) 890-896.

College of Optometrists (2017) Examining patients with dementia or other acquired cognitive impairment. London: College of Optometrists.

Dunne TE, Neargarder SA, Cipolloni P, CroninGolomb A (2004) Visual contrast enhances food and liquid intake in advanced Alzheimer’s disease.

Clinical Nutrition 23(4) 533-538.

Fischer ME, Cruickshanks KJ, Klein BE, Klein R et al (2009) Multiple sensory impairment and quality of life. Ophthalmic Epidemiology 16(6) 346-53.

Haran MJ, Cameron ID, Ivers RQ, Simpson JM et al (2010) Effect on falls of providing single lens distance vision glasses to multifocal glasses wearers: VISIBLE randomised controlled trial.

BMJ 340(7760) c2265.

Harithasan D, Mukari S Z-M S, Ishak WS, Shahar S, Yeong WI (2020) The impact of sensory impairment on cognitive performance, quality of life, depression, and loneliness in older adults.

International Journal of Geriatric Psychiatry 35(4) 358-364.

Lord SR, Dayhew J (2001) Visual risk factors for falls in older people. Journal of the American Geriatric Society 49(5) 508-15.

Naël V, Pérès K, Dartigues J-F, Letenneur I et al (2019) Vision loss and 12-year risk of dementia in older adults: the 3c cohort study. European Journal of Epidemiology 34 141-152.

Piano M (2020) How dementia affects sight and visual processing. Journal of Dementia Care 28(5) 32-34.

Rogers MAM, Langa KM (2010) Untreated poor vision: a contributing factor to late-life dementia.

American Journal of Epidemiology 171(6) 728735.

Royal College of Physicians (2017) Bedside vision check for falls prevention: assessment tool.

London: Royal College of Physicians.

Saftari IN, Kwon OS (2018) Ageing vision and falls: a review. Journal of Physiological Anthropology 37(1) 11.

Salobrar-García E, de Hoz R, Ramírez AI, LópezCuenca I (2019) Changes in visual function and retinal structure in the progression of Alzheimer’s disease. Plos One 14, e0220535.

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Involvement in meetings and When face-to-face meetings and events resume, there is likely to be a renewed commitment to involving people with dementia and carers.

Clare Mason and colleagues reflect on what they have learned from their own experiences and provide some tips for good practice here is increasing recognition of the role of patient and public involvement (PPI) in both research and policymaking. In particular, there has been a shift in the design and conduct of health research to focus more on the patient experience (Pickett & Murray 2018). Rather than people just being “participants” they can have an active role in shaping the research.

In the dementia field, there are a growing number of examples of the benefits of involving people with dementia and carers in research as PPI members or experts by experience.

Parveen et al (2018) involved a diverse range of experts by experience in the Caregiving HOPE study, who had different roles based on their skills, experience and interests.

Formed in 2014, the ALWAYs group described in Litherland et al (2018) comprises people with dementia and carers who act as advisors to the IDEAL research programme (Clare et al 2014).

Reporting findings from a focus group with the ALWAYs group, Litherland et al (2018) identified a range of gains from their involvement in the study from building confidence, giving them a role, and feeling their contributions were valued by the research team.

There has been good practice guidance developed in PPI, giving a framework for meaningful involvement and ensuring people are appropriately supported and compensated for it. PPI members might receive a payment in return for their involvement, travel expenses or daily allowances, for example (INVOLVE 2012). There are also checklists for improving the reporting of PPI in research publications (Staniszewska et al 2017).

But formal guidelines on how to involve people in dissemination – a key part of the research process – have been lacking, although there is some guidance from the DEEP network (DEEP 2013) on involving people with dementia and carers at meetings and events. What is clear is that it requires careful consideration and support.

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For example, Parveen et al (2018) describe how experts by experience were keen to present at events to disseminate findings from research but lacked confidence. With appropriate support, though, they were able to do so and their wellbeing improved in consequence.

Similarly, with support, members of the ALWAYs group have co-presented at events (Litherland et al 2018).

Here, some of us reflect in turn on our own experiences at co-presenting at meetings and events, and we share recommendations for best practice.

Involvement in meetings Clare’s case study Over recent years, the way we involve people living with dementia in our work has changed considerably. I have learned from experience that preparation is important to ensure people feel welcomed, supported and confident enough to participate. It can mean providing clear and concise instructions about the location of a meeting.

For example, for one meeting I provided detailed instructions of how to find the venue, including photographs of landmarks, car parks and the venue entrance. I received positive feedback from attendees who said they otherwise would not have found it. Within the building I put up signage to help people find their way, such as to show people where the toilets were.

I also put signage on the food and catering equipment. This all supported people to feel they had an element of independence and control in the meeting and alleviated some of the anxieties that dementia presents a person who is outside their own familiar environment.

Clare Mason is a dementia care trainer and patient and public involvement lead, Catherine Quinn is a lecturer in dementia studies, and Sahdia Parveen is a senior research fellow, all at the Centre of Applied Dementia Studies at the University of Bradford. Michael Andrews lives with posterior cortical atrophy and is an expert by experience, also at the Centre of Applied Dementia Studies, and Rachael Litherland is a director of Innovations in Dementia PPI consists of a number of layers: the initial contact layer involves inviting people to participate, answering questions, allaying fears and putting minds at rest. The next layer is sending out information and follow-up reminders which vary from person to person based on their individual needs. You need to ensure written materials and presentations are in an accessible format and language, and that they are sent in advance of meetings.

Feedback from experts by experience about the language, length and density of some documents has highlighted how getting this wrong can create a negative impression and potentially result in people failing to attend or engage for fear of looking foolish. Although the preparation and support needed to involve people with dementia and their families in meetings and conferences can be time-consuming, the effort it takes can be “make or break” for an event and the key to ensuring people feel inclined to return in the future.

Experts by experience were keen to present at events on research findings, but lacked confidence.

With appropriate support they were able to do so and their well-being improved in consequence

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events: tips for good practice Overall recommendations Be clear what you want from people in the context of the overall plan for the conference or event Do you want a formal presentation? Is it a round table discussion? Perhaps an interview or film would work best? Let people know if there are particular restrictions such as the length of time allocated to them on the agenda. The best approach is to discuss preferred contribution styles and methods with the person.

Ensure you have given yourself enough planning time The longer the lead-in time to the event, the better. Last minute requests for input are stressful. Start your support a long time before the actual day.

Make sure there is support for the person to attend Assistance with travel (e.g. booking transport), an accessible map that can help people find the venue, meeting and greeting people at transport hubs, and a named contact person throughout all help to provide reassurance.

Keep in touch Don’t just expect a person to turn up at your event, contribute and go away again.

Have a contingency plan As part of your planning, pre-empt as many eventualities as you can. Especially worth thinking about are what will you do if someone cannot contribute on the day and could another person with dementia step in, perhaps drawing on the contributions the original person would have made? Perhaps there is a film you can show instead?

Follow up afterwards Thank people for their time (a thank you card can mean a lot) and let them know how their contribution was received. Ensure any fees and expenses are paid quickly. Find out how it felt for the person with dementia and/or carer. This is your most valuable feedback for preparing for future meetings and events.

Co-presenting with carers Sahdia’s case study A key aspect of the Caregiving HOPE project – a study of carers in different communities – was the close collaboration between researchers and family carers. Family carers were involved in all aspects of the project, including deciding on the research questions, determining how data was to be collected, analysing the data and disseminating the findings.

Over the three years, I presented our findings at several national and international conferences. Due to the nature of the project, it was important for me to present the work with carers. This was not always possible because conference organisers often only allowed academics to attend and present. Where allowances were made for carers to attend, the issue of registration fees, travel and accommodation costs often remained.

There were, however, several benefits from involving carers as co-presenters.

Delegates often reported that the carer’s presentation enabled the findings of the study to be shared in a more engaging

manner and they found their personal accounts interesting and impactful.

For me as a researcher, conferences are made more enjoyable by the carer’s presence as we are able to provide each other with moral support, for example in networking with new groups and making new contacts. Perhaps most importantly, the carer and I were able to develop a personal relationship and I gained a deeper understanding of the caregiving experience from various perspectives.

Carers who have co-presented with me thought they gained a greater understanding of the academic world and its processes. More importantly, they felt a sense of achievement and a growth in self-confidence.

During the project, it was not just the research team inviting carers to copresent, but a number of carers invited me to speak at carer-specific events. The following factors helped us to feel prepared and confident: • knowing who the audience would be at the event to ensure the presentation was pitched appropriately • discussing in advance what we would

present and what our roles would be • ensuring co-presenters knew the address of the venue and the best ways of getting there • supporting each other to arrive safely and on time. As I relied on public transport, carers would often pick me up from the train station and drive me to the venue. I in turn would often book everyone’s train tickets and accommodation when attending academic conferences • debrief after the event, discussing what aspects worked well, what we enjoyed and what we could do differently next time.

Chairing a symposium Catherine’s case study I organised and chaired a symposium where there were four presenters who all worked together on the IDEAL research programme, which explored how to live well with dementia. Three of the presenters were university academics and the other was Keith, who has dementia.

To prepare I first contacted Keith and asked if he wished to present. I gave him a brief overview of what I would like him to talk about and how long he would have for his talk. Keith wrote a script which he sent me beforehand so that I knew what he was going to say. He also prepared some slides.

With assistance from Rachael Litherland, co-author of this article, we sorted out his overnight accommodation and transport to and from the venue. As chair I was responsible for the order in which the presentations were to be given; I ordered them based on content and Keith was due to be the last to present.

But, when we later found out what time we would be presenting, I quickly realised that my plan would not work. Our slot turned out to be an afternoon one and, when I spoke to Keith on the day of the event, he shared his concern that it would be harder for him to concentrate later in the day. Consequently, I re-ordered the presentations so that his came earlier in the sequence.

Keith’s talk went well as he eloquently described his experience of receiving a diagnosis and life post-diagnosis.

Normally, after presentations the audience can ask questions, but Keith made it clear to me that he was tired after his talk so I just informed the audience that we wouldn’t be taking any questions at that time.‰

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‰ On reflection, what I learned from organising the event was the importance of preparation. If you are asking someone to speak you need to provide an overview of the topic they are to address and tell them how long they have got. Keith is an experienced speaker, but someone else may have needed more support. In these situations, it may be better to co-present alongside them.

Last, it is vital to be responsive to the situation and supportive, I was able to change the time of Keith’s presentation slot and stepped in when he requested no questions after his talk.

Conclusion Michael Andrews and Clare Mason

Presenting at a conference Clare and Michael’s case study Clare writes: Michael and I co-presented at a conference in 2019 about a study that Michael had participated in. To prepare, we discussed his experience of being a study participant. I typed his words verbatim and then we extracted the key points he felt he wanted to get across.

I put the material on to slides with some pictures. I then emailed the presentation to Michael and he made final changes. We were able to discuss the presentation during the conference and had a short rehearsal, agreeing who would present when. At the presentation Michael had a printed copy of the slides and I had them on my iPad. Over time we built up a good rapport with one another and felt this came across during our presentation. I was able to prompt him if he got stuck and (hopefully) he knew I would support him if he needed it.

Michael writes: When I was asked if I would do a presentation, I jumped at the chance but then got nervous when I was asked if I could make my own way to the conference venue, which would involve multiple journeys. I found that this was going to take me out of my comfort zone and I knew from past experience that I would start to get confused.

But when I explained this to the study team, I was reassured that they would not want to give me a bad experience so other arrangements were made. Instead, it was decided I would travel with Clare and stay in a hotel for the two nights of the conference.

At the conference I helped at a stand for the MSc in Advanced Dementia Studies at Bradford University, accompanied by one of the current MSc students. I was able to attend some of the other talks at the conference with this MSc student which I enjoyed.

Clare and I had a trial run of our presentation and that was helpful.

On the day of the presentation the main challenge was that you had to get up on to a platform to do the talk, which was hard for me to see as it was the same colour as the floor.

I was thinking, “Please don’t fall getting on to the platform or getting off it”. Another challenge was that I couldn’t see the screen, so I didn’t know where we were in the presentation.

To deal with this I was asked, “Do you want to tell us about [such and such]?” and that would remind me what was next. When presenting I had forgotten some of the things we talked about in the trial run. Nerves were part of this, as you are talking to an audience of people you’ve never seen before. However, Clare was very supportive.

Overall, what helped me was feeling supported. If I wasn’t sure about something I could always ask, and I was always asked if there was anything which would help me. I felt that I was not under pressure. If anyone is thinking of doing a presentation then I would tell them to do it, they are not going to be judged.

People need to know about the impact dementia has on the person living with it and their families, and the only way to do it is to tell them. If I can do it, then anyone can.

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As our case studies indicate, your primary goal as someone organising a presentation should be that people with dementia and carers leave the meeting or event feeling that it was a good experience and that their contributions were valued.

Where necessary think about how you might inspire prospective speakers to feel confident, such as involving more than one person with dementia so that they can offer each other peer support.

Always talk to people about how you might best support them.

By giving yourself time to allay any worries and answer questions, you can do much to make your contributions to conferences and events successful and rewarding. n References Clare L, Nelis SM, Quinn C, Martyr A et al (2014) Improving the experience of dementia and enhancing active life—living well with dementia: study protocol for the IDEAL study.

Health & Quality of Life Outcomes 12 164.

DEEP (2013) Involving people with dementia at conferences and events. Dementia Engagement and Empowerment Project (www.dementiavoices.org.uk).

INVOLVE (2012) Briefing notes for researchers: involving the public in NHS, public health and social care research. Eastleigh: INVOLVE. Litherland R, Burton J, Cheeseman M, Campbell D et al (2018) Reflections on PPI from the ‘Action on Living Well: Asking You’ advisory network of people with dementia and carers as part of the IDEAL study. Dementia 17(8) 10351044.

Parveen S, Barker S, Kaur R, Kerry F et al (2018) Involving minority ethnic communities and diverse experts by experience in dementia research, in Pickett & Murray cited below.

Pickett J, Murray M (2018) Patient and public involvement in dementia research: Setting new standards. London: Sage.

Staniszewska S, Brett J, Simera I, Seers K et al (2017) GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Research Involvement and Engagement 3 13.

Why do we need Rare Dementia Support?

How can younger people with rare forms of dementia be better supported in health and social care? Emilie Brotherhood and colleagues launch a series of articles focusing on young onset dementia with a look at the role of the Rare Dementia Support network Emilie Brotherhood is a research fellow, Jill Walton is a consultant advisor and specialist nurse, and Sebastian Crutch is a professor of neuropsychology, all from the Dementia Research Centre, Institute of Neurology at University College London, on behalf of the Rare Dementia Support service and RDS Impact research teams hile the majority of people diagnosed with a dementia have reached retirement age, a significant minority have not, and they often have a very different experience of the condition from their older counterparts. Between 5% and 10% of those diagnosed are still of working age and may be the main household earner or a parent of young children (Svanberg et al 2011, Allen et al 2009).

Up to 15% of people with young onset dementia find themselves on a confusing and often frightening journey through a series of symptoms and behaviours

W

Dr Emma Harding leads a small group discussion with members of Rare Dementia Support.

Photo: Farnetti/Wellcome

which are not memory-related, are out of character and inexplicable – and which often have a negative impact on social lives, professional capabilities and relationships (Sampson et al 2004, Robinson et al 2015). An outline of the clinical characteristics of rare dementias and the accompanying support needs is given in the table opposite.

For 1% of this younger cohort, the reality is that the form of dementia with which they are diagnosed is hereditary and that the probability of their own children inheriting the condition is no

How it all began Inaugural meeting of the “Pick’s Disease” support group An invitation was sent, a room was booked, biscuits were bought, tea was provided – and eight people turned up for the inaugural meeting. The agenda took care of itself, such was the shared cathartic release of experience and emotion as people gathered for the first time with others who related to and understood their story.

One of the common themes that ran throughout this first and the subsequent early meetings was a sense of relief from carers who had wondered if their stories would ever be believed, let alone taken seriously enough to be supported.

Many questions were asked. When would the next meeting be? What other opportunities for meeting together could be explored? Could a fact sheet be produced?

Could contact details be exchanged? Could people meet up outside of the official group meetings?

The energy generated within the group put validation of its purpose beyond doubt.

Though we didn’t know it at the time, the journey towards Rare Dementia Support (RDS) had begun.

Jill Walton

more determinable than the flip of a coin.

When faced with these puzzling symptoms, individuals typically recount their symptom history as either having been repeatedly dismissed by the professionals to whom they turned for help or perhaps too readily taken up, leading to the diagnosis of a different – unrelated – condition. Approximately 30% will receive an incorrect psychiatric diagnosis before they receive the correct diagnosis of a rare dementia (Woolley et al 2011).

In comparison to the tailored support available for more typical, memory-led forms of Alzheimer’s disease for individuals over the age of 65, there is often a lack of disease-specific awareness in healthcare settings of the nuanced support required by people who do not have a diagnosis of typical Alzheimer’s, or at which stages of the young onset condition this support is likely to be needed.

Tailored support Support groups are one way in which an appropriate response to the needs of people with rare dementias can be engineered. These are mechanisms by which people living with a dementia and their carers can socially interact and vary in content according to the wishes of the group. A single communication platform or a combination of them may be used, face-to-face, telephone or videoconference.

Similarly, they may rely on facilitation by professionals or by experts by experience or both (Toms et al 2015). ‰

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Table 1: Outline of the clinical characteristics of the rare dementias

‰ Support groups tailored to rare dementias are important in providing an opportunity for people to process their (or their relative or friend’s) specific diagnosis, and all the challenges it entails (Walton et al 2015). Such a diagnosis can cut people off from the outside world, including others with the same condition, so disease-specific support groups are all the more vital in allowing the freedom to explore these challenges through peer-to-peer interactions.

Rare Dementia Support Rare Dementia Support (RDS), now a dynamic network of national and regional support groups with a

membership of more than 1,900 people, began in 1993 as a group of nurses regularly speaking to the carers of people attending what is now known as the Specialist Cognitive Disorders Clinic at the National Hospital for Neurology and Neurosurgery (NHNN) in London (see figure 1 opposite).

The majority of people attending this clinic were subsequently diagnosed with a rare form of dementia. The nurses and clinical team recognised many underlying similarities in the issues faced by people with these atypical diagnoses, and also by their families and friends.

While new technology now allows for information sharing in seemingly limit-

30 The Journal of Dementia Care November/December 2020 Vol 28 No 6

less and unboundaried measure, the first “Pick’s disease (FTD) support group”, established in 1994, was modelled closely on the face-to-face peer support offered to people with typical, memory-led Alzheimer’s disease by national charities at the time (see box, left).

Over the past 26 years, as RDS has evolved, it has responded to the questions posed in the first meeting and those which would follow – essentially, questions about how people would be enabled to learn from one another. It began with consultant nurses and clinical teams from the National Hospital and UCL’s Dementia Research Centre providing a flurry of factsheets, bi-annual newsletters,

Figure 1: Timeline depicting development of Rare Dementia Support (RDS)

handbooks and webpages, in addition to their day-to-day roles.

Today, RDS has a specialist direct support team with a wealth of experience from the charity, research and clinical sectors. A membership database comprising individuals across 20 different countries worldwide has subsequently developed, as well as the support groups. These groups, to date, encompass five further disease-specific support groups (for conditions outlined in the table), carer-specific support groups covering all rare dementia diagnoses, 26 UK regional support groups, and individual buddying where local provision is sparse. When a group for former carers who have experienced loss through bereavement was established in 2017, one member commented that the “RDS is a place which will never discharge you”.

Face-to-face meetings, originally comprising groups of 10 or so members, now regularly reach more than 100 attendees. Our annual seminars are recording attendances of more than 150.

In parallel with our burgeoning meetings programme, a Dementia Research Centre-led residency in the Hub at Wellcome Collection in London (20162018), which brings different disciplines together in one place, meant RDS meetings could expand from the closed, clinical spaces in the National Hospital to an elegant conference suite at the Wellcome Trust. And it wasn’t just a

We aim to equip members with the knowledge and tools to feel empowered and advocate for themselves matter of aesthetics; as one group member commented, “Being in a space like this, it makes you feel worthy, like you matter.”

RDS has grown organically and responsively to need. Our organisational culture centres on delivering support by, with, and for people living with and alongside a rare dementia. We aim to equip members with the knowledge and tools to feel empowered and able to advocate for themselves as they navigate complex healthcare, social and financial systems in order to receive the best support available from each.

Allied to this social, emotional and practical support are research and training for professionals across various disciplines. For example, we train optometrists who may be consulted by someone who has perfect eye health yet experiences visual difficulties due to posterior cortical atrophy (PCA).

We are also the focus of the RDS

Impact research project funded by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR), which is the first major study of the value of multicomponent support groups for people living with or supporting someone with a rare form of dementia (Brotherhood et al 2020). The multicentre study consists of five work packages: longitudinal and cross-sectional cohort interviews; theoretical development; developing measures; novel interventions; and economic analysis.

Over the years, our approach to caring for and supporting people has adjusted to organisational, social and technological change, evidenced most recently in the temporary shift online of the entire service and widening its reach as a result of the Covid-19 pandemic (SuárezGonzález et al 2020). We are constantly reviewing the ways in which RDS services can be extended and adapted to more fully embrace and meet needs.

In the last century the author CS Lewis wrote: “Friendship begins the moment you meet someone else and realise…what...you too? I thought I was the only one!” This sums up the essential remit of RDS, which has remained the same even as it has evolved. We will finish with RDS group member Alexine Crawford whose words, like those of Lewis, have provided the backdrop to support group meetings and a context for members for many years: ‰

Vol 28 No 6 November/December 2020 The Journal of Dementia Care 31

‰ Telling our story and hearing the story...is of enormous importance, both for the teller and the hearer. Without a sense of history, our view of the present and of ourselves is both limited and handicapped. The telling and the hearing bring healing and growth.

For more information, please visit: www.raredementiasupport.org @RareDementia @RDS_ImpactStudy Acknowledgements We are grateful for funding from the ESRC (grant/award no ES/S010467/1), NIHR, Nipissing University, Bangor University and University College London. We are indebted to the current and former members of RDS we have had the privilege of working with, without whom this study would not be possible. The RDS Impact study was funded by the ESRC/NIHR Dementia Research Initiative as “The impact of multicomponent support groups for those living with rare dementias” (full team list available here: www.raredementiasupport.org/research /help-us-improve-support-for-raredementias/) n References Allen J, Oyebode J, Allen J (2009) Having a father with young onset dementia: The impact on well-being of young people. Dementia 8(4) 455-480.

Brotherhood E, Stott J, Windle G, Barker S et al (2020) Protocol for the Rare Dementia Support Impact study: RDS Impact. International Journal of Geriatric Psychiatry 35(8) 833-841.

Robinson L, Tang E, Taylor J (2015) Dementia: timely diagnosis and early intervention. BMJ 350 h3029.

Sampson E, Warren J, Rossor M (2004) Young onset dementia. Postgraduate Medical Journal 80(941) 125-139.

Suárez-González A, Zimmermann N, Waddington C, Wood O et al (2020) Nonmemory led dementias: care in the time of covid-19. BMJ 369 m2489.

Svanberg E, Spector A, Stott J (2011) The impact of young onset dementia on the family: a literature review. International Psychogeriatrics 23(3) 356-371.

Toms G, Clare L, Nixon J, Quinn C (2015) A systematic narrative review of support groups for people with dementia. International Psychogeriatrics 27(9) 1439-1465.

Walton J, Ryan N, Crutch SJ, Fox N (2015) Rapid response to: Robinson L, Tang E, Taylor J (2015) Dementia: timely diagnosis and early intervention (BMJ 350 h3029), comment posted 26 June at www.bmj.com/content/350/bmj.h3029/rr-0 Woolley J, Khan B, Murthy N, Miller B, Rankin K (2011) The Diagnostic Challenge of Psychiatric Symptoms in Neurodegenerative Disease.

Journal of Clinical Psychiatry 72(02) 126-133.

Sometimes a HUG is all you need Providing emotional comfort for care home residents has been especially challenging during the pandemic. Cathy Treadaway, Jackie Pool and Asa Johnson evaluated a playful object called HUG to find out how it could help uman beings yearn for human contact and the health benefits of giving and receiving hugs have been well documented (Fredrickson 2014, Tanner 2017). By depriving so many of us of physical contact, the pandemic has both shown us how important it is and alerted us to alternative ways of providing emotional comfort. These alternatives may not be as good as the real thing, but they can definitely help make life feel better.

In 2018, we reported on HUG as part of an evaluation of a collection of comforting playful objects for advanced dementia care, designed by LAUGH researchers at Cardiff Metropolitan University (Treadaway 2018). This research, funded by the Arts and Humanities Research Council, investigated ways of improving quality of life for people living with advanced dementia. The outputs from the research included a series of playful objects designed to engage, comfort and bring pleasure (www.laughproject.info).

H

Figure 1

32 The Journal of Dementia Care November/December 2020 Vol 28 No 6

Professor Cathy Treadaway is professor of creative practice at Cardiff Metropolitan University. Jackie Pool is a specialist occupational therapist and director of memory care and Asa Johnson is project manager (activities & memory care). both at Sunrise Senior Living

The HUG: soft and comforting HUG, now a registered trademark, has been one of the most successful of these playful objects and was selected as a finalist in the 2018 National Dementia Care Awards. It is a soft, comforting object, which contains a simulated beating heart and programmable electronics that can play a personalised playlist of favourite songs or sounds.

Its weighted arms produce the sensation of a human embrace and the soft form of the body shape is designed to trigger emotional memories of nursing a small child. The beating heart is intended to

Above: Sunrise team with HUGs: front (l-r) Jackie Pool and Phil Vale; back (l-r) Negin Meshkati, Sarah Jayne Evans, Michelle Malpas, Danny Langhorn, Sara Reading, Asa Johnson.

Right: Sunrise residents and a care worker cuddle with HUG

evoke the sensation of physical closeness with another person, which is often lacking for someone living in residential care, especially if they receive few visitors.

The prototype for HUG was developed for a lady who was on end of life care. Not only did it give her obvious pleasure, but also had a positive impact on her general health and overall wellbeing (Treadaway et al 2019). It led to further research funding from the Welsh Government for a partnership with Sunrise Senior Living and the NHS for a project called LAUGH EMPOWERED PSCI. Our aim in this follow-up study was to discover whether the wellbeing produced

by HUG, identified in the previous evaluation, could be corroborated and quantified with a larger cohort. In addition, the larger study provided reallife case studies relating to the product design in two contexts: residential care and hospital. We wanted to use this data to improve the design in order to commercialise HUG and so make it publicly available.

Evaluation method We recruited 40 care home residents and hospital patients to take part in the project.

Here, we will report only on part of the project, in which 20 residents with dementia at Sunrise’s care home in Cardiff participated. The home has 59 residents, 22 of whom live in the “Reminiscence Neighbourhood” and in most cases were given a HUG. Every Sunrise community features one of these Reminiscence Neighbourhoods, a

specialised care setting that is devoted entirely to people with dementia or other forms of memory loss. These neighbourhoods are designed to provide comfort, security and life enrichment in an engaging and inviting environment.

Resident wellbeing is a priority, involving the use of stimulating and comforting objects as well as activity plans for every resident to engage in meaningful occupation. The HUG evaluation fitted well with this ethos.

Twenty prototype HUGs were made prior to the study with the help of a small group of women who were trained by the research team in small batch textile manufacturing (Taylor et al, in press). The prototypes were handed over to Sunrise of Cardiff at a launch event, which gave the researchers an opportunity to get to know the residents, staff and families.

The study started in May 2019 and ran for a year. The HUG prototypes were given to individual residents in the Reminiscence Neighbourhood over a phased period of four months. A team of 26 care staff, led by reminiscence coordinator Danny Langhorn, assisted in the project.

Collection of baseline and outcome measures relied on the Pool Activity Level (PAL) Instrument (Pool 2012).

This assessment and profiling tool was developed by co-author Jackie Pool to inform the provision of appropriate activity-based care for people with cognitive impairments by determining levels of cognitive and functional ability.

She created a modified version of the instrument specifically for this project, in

addition to which an adapted Bradford Dementia Wellbeing Profile was deployed to help understand HUG’s effect on residents’ quality of life and how they were faring psychologically and socially.

We collected data before each resident had been given a HUG, then at three months and six months after they had received it, while also carrying out qualitative interviews with care staff and family members. This qualitative mixed method approach enabled us to investigate whether findings from the initial LAUGH research could be corroborated and also to provide vital feedback on the design specification and usability of HUG. Residents retained their HUGs following completion of the evaluation.

Staff first assigned one of four levels of ability – or “activity levels” – in using the HUG to each resident, having assessed them against the nine activity domains set out in the PAL Checklist. The resulting PAL Profile gave an overview of the way that a person best engaged with the HUG and how to create a facilitating environment. The four activity levels, as named by the PAL Profile, were: ‰

Vol 28 No 6 November/December 2020 The Journal of Dementia Care 33

‰planned (numerical score = 4), exploratory (3), sensory (2), and reflex (1).

Although there was value in assigning an overall activity level to each resident, we were also able to determine finer changes by adding up numerical scores from each of the nine activity domains.

Score ranges could therefore vary between residents from a minimum of 9 to a maximum of 36.

conversation, whether it’s with you... and especially with other residents, as that’s pretty amazing, because often they will be very much within their own world rather than a shared world.

Results Our analysis of the findings found that, while six residents overall improved by one activity level (e.g. from “reflex” to “sensory”) after three months, nine residents overall improved by score. After six months, five residents had improved by one activity level while six residents had improved by score (see figure 1, p32).

These results are significant, particularly in the context of a neurodegenerative disease in which the assumed trajectory of a person is towards reduced activity and limited cognitive response. Where dementia is concerned “no change” over the six-month evaluation might be perceived as positive, given that it suggests no deterioration in the person’s condition.

Findings from the adapted Bradford Wellbeing Profile indicate that wellbeing improved for 87% of residents who had a HUG for six months (see figure 2, right).

Although not every resident benefitted from using HUG, the overall findings from the study confirm that it can play an important role in improving residents’ quality of life and maintaining a person’s connection and communication with the world around them.

Staff were encouraged to complete a HUG engagement plan and to use their knowledge of residents to specify whether the activity should be accompanied by music, length of session, preferred seating arrangements, and top tips for promoting engagement such as what to say to the resident. Further work is now needed in order to fully understand the effect of care staff on our findings, including the ways in which HUG was introduced to residents and how it was used in the care environment.

The human story behind this research has been beautifully narrated and captured through the words of relatives documented during qualitative interviews with the university researchers. One of these stories features in an interview with Alison Webb and her mother Margaret that was filmed at Sunrise Cardiff by the BBC and can be found at www.bbc.co.uk/news/ukwales-50237366. In the TV interview, Alison comments on how using HUG seems to have “brought my mum back”.

Figure 2: Wellbeing score for people who had a HUG for six months

She also explained to researchers: She is just in a much better place and I mean she wasn’t sad before, but she was very, very distant and sometimes you would see glimpses of my mum but now I’m seeing them, a lot more of them… To see her coming back is just amazing… just brilliant!

HUG was designed to provide the reciprocal sensation of both giving and receiving a hug. Having something to nurture, love and caress seems to fulfil a deep human need and the emotional benefits of gentle stroking have been evidenced in research (Tai et al 2011, Tanner 2017). One relative commented on her mother’s response to HUG: She finds it very comforting, I’m not sure what her perception is. I know she talks to it, and she kisses the head and she strokes it…she absolutely loves it. Honestly when I saw her with it the first time, I cried, cos she was getting so much comfort from it and I just can’t praise it enough.

The simulated heartbeat seems to be a significant aspect of the design and provides a soothing sensation that encourages residents to hold on to HUG. A member of care staff observed that when a resident touched one, “they automatically start to bring it closer because of the heartbeat.”

According to Danny Langhorn, loneliness and dissociation from the everyday world is a major stress factor for people with dementia. He advocates using HUG with residents “when they’re feeling lonely because it just brings them that comfort [they need]”. The team at Sunrise Cardiff also noted that it stimulated greater interaction and communication, not only with staff and relatives but also between residents. As Danny put it: They will share and interact together with it… It’s great if it brings about connections,

34 The Journal of Dementia Care November/December 2020 Vol 28 No 6

Improvements in residents’ posture were observed, body position sometimes becoming more upright when cuddling a HUG. Where residents had a tendency to fall forward, it helped restore posture and alleviate the associated pain. The internal electronics can also accommodate people’s personalised music playlists, which users found soothing and pleasurable.

The specification for HUG will be adjusted in the light of the feedback we have collected during the project with the aim of producing a marketable product available to all. With this in mind a new business, HUG by LAUGH, has been established with the support of Cardiff Metropolitan University and assistance from Alzheimer’s Society, which is championing the product through its Accelerator Programme.

More information about the product and the research can be found on www.hug.world where it is also possible to register interest and keep up to date with developments.

Acknowledgements Sunrise Senior Living and the LAUGH research team would like to thank the staff and residents at Sunrise Cardiff for their help with the research and their contributions to this article. We also acknowledge our funders: Arts and Humanities Research Council (grant reference AH/M005607/1), Welsh Government ERDF (grant reference 2018/COL/012/80839). n References Fredrickson B (2014) Love 2.0: Creating Happiness and Health in Moments of Connection.

New York: Penguin.

Pool J (2012) The Pool Activity Level PAL Instrument for occupational profiling. London: Jessica Kingsley Publishers.

Tai K, Zheng X, Narayanan J (2011) Touching a Teddy Bear Mitigates Negative Effects of Social Exclusion to Increase Prosocial Behavior. Social Psychological and Personality Science 2(6) 618626.

Tanner L (2017) Embracing Touch in Dementia Care. London: Jessica Kingsley Publishers.

Taylor A, Treadaway C, Fennell J, Davies MS (2020 in press) Making HUGs: crafting wellbeing benefits through social manufacturing. Journal of Arts and Communities.

Treadaway C (2018) LAUGH: playful objects in advanced dementia care. Journal of Dementia Care 26(4) 26-28.

Treadaway C, Taylor A, Fennell J (2019) Compassionate design for dementia care.

International Journal of Design Creativity and Innovation 7(3) 144-157.

Home care during Covid-19 pandemic The lockdown imposed in the UK and associated public health measures of social distancing are likely to have had a great impact on care provision. Telephone interviews with 15 unpaid carers of people with dementia explored decision-making relating to paid home care support for dementia in the time of COVID-19. Analysis identified three overarching themes: 1) risk; 2) difficult choices and risk management; and 3) implications for unpaid carers. Many decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers increasing their own care hours to support the person living with dementia. Findings raise implications for providing better personal protective equipment for paid carers, and for improved support for unpaid carers in their roles, with the pandemic likely to stay in place for the foreseeable future.

Giebel C, Hanna K et al (2020) Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study. BMC Geriatrics 20: 333 (2020). Published online 9 September as doi 10.1186/s12877-020-01719-0 (Open access)

Research summaries The research papers summarised here are selected for their relevance and importance to dementia care practice by the section 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. compliance with local guidelines was ‘sufficient to good’ and that no new COVID19 infections were reported during the study.

Verbeek H, Gerritsen DL et al (2020) Allowing visitors back in the nursing home during the COVID-19 crisis: a Dutch national study into first experiences and impact on wellbeing. Journal of the American Medical Directors Association 21(7): 900-904. Published online 15 June as doi 10.1016/j.jamda.2020.06.020 (Open access)

Closing dementia services due to Covid-19 A national survey between April and May 2020 explored the impact of Covid-19 public health measures on access to social support services and the effects of closures of services on the mental well-being of older people and those affected by dementia. 569 participants took part and analysis showed that

higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental wellbeing in unpaid carers and older adults. The paper concludes that being unable to access social support services due to Covid19 contributed to worse quality of life and anxiety in those affected by dementia and older adults across the UK. Social support services need to be enabled to continue providing support in adapted formats, especially in light of continued public health restrictions for the foreseeable future.

Giebel C, Lord K et al (2020) A UK survey of COVID‐19 related social support closures and their effects on older people, people with dementia, and carers. International Journal of Geriatric Psychiatry (Early view).

Published online 19 September as doi 10.1002/gps.5434 (Open access)

Allowing visitors back in to care homes A Dutch guideline was developed to cautiously open nursing homes for visitors during the COVID-19 pandemic. This mixed methods study reports on how the guideline was applied in the local context and the impact on well-being of residents, their family caregivers, and staff. 26 nursing homes took part and variation in local protocols was found, for example relating to the use of personal protective equipment, location, and supervision of visits. In general, it was found that experiences were positive. All nursing homes recognised the added value of real and personal contact between residents and their loved ones and indicated a positive impact on well-being.

The authors found that

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 6

November/December 2020

Nutrition and dementia Issues with eating and drinking are common in all stages of dementia but are most prevalent in the middle and late stages of the condition. The aim of this service evaluation was to investigate whether use of a nutritional guide for care staff could improve the provision of nutritional care for people living with dementia in care homes. 47 questionnaires were completed and respondents reported that the guide had supported them to increase the appetite and fluid intake of people living with dementia.

The guide prompted staff members to monitor for malnutrition using validated screening tools and provided strategies to encourage people living with dementia to eat more at mealtimes.

Murphy J, Aryal N (2020) Improving the provision of nutritional care for people living with dementia in care homes. Nursing Older People 32(5):23-29. Published online 12 August as doi 10.7748/nop.2020.e 1263 (Open access)

Family carers Understanding family carers’ needs is essential to support their care-giving role during the dementia journey. This mixed-method systematic review aimed to identify and synthesise existing literature on the needs of family caregivers of people with dementia at home. Out of 1,196 citations, a total of 34 studies were included in the review.

The authors summarise the emerging interrelated needs in four themes: (a) being supported, (b) receiving accessible and personalised information, (c) being trained and educated to support someone with dementia and (d) finding a balance.

The authors found that receiving information is a priority for family members to improve their knowledge and develop coping abilities, care skills and strategies. They also need social, psychological and emotional support and access to flexible, tailored and timely formal care. Further studies are recommended to detect changes in family carers’‰

The Journal of Dementia Care 35

‰needs through the progression of dementia.

Bressan V, Visintini C, Palese A (2020) What do family caregivers of people with dementia need? A mixed‐method systematic review.

Health and Social Care in the Community 28(6): 1942– 1960.

Published online 16 June as doi 10.1111/hsc.13048 (Open access)

Advance care planning decisions This study across 46 Belgian nursing homes compared perspectives on the level of shared decision-making during advance care planning conversations, with data from nursing home staff, residents and external raters of recorded conversations. Staff also completed an additional questionnaire on the importance of shared decisionmaking, their perceived competence in practising the approach and with what frequency. It was found that residents with dementia were grateful when involved in these discussions and receiving more information about advance care planning could provide them with the knowledge needed to prepare for such a conversation.

The study recommends that training programs should focus on providing professionals with better knowledge of, and skills for, shared decision-making and promote team-based collaboration.

Goossens B, Sevenants A et al (2020) Shared decision-making in advance care planning for persons with dementia in nursing homes: a cross-sectional study. BMC Geriatrics 20, 381. Published online 2 October as doi 10.1186/s12877020-01797-0 (Open access)

Cancer care and dementia The comorbidity of cancer and dementia is relatively under-researched, and this ethnographic study reports on the challenges for people with dementia undergoing cancer treatment within secondary care. Utilising observations, informal conversations and interviews, it was found that people with cancer and dementia experienced challenges navigating through multiple services, appointments and layers of often complex

information; repeatedly navigating transport to and from hospital; and navigating non-dementia-friendly hospital outpatient environments. This study indicates the importance of addressing ways to improve the experiences of people with dementia and cancer travelling to and from hospital appointments, alongside developing ‘dementia-friendly’ outpatient departments.

Surr C, Griffiths, AW et al (2020) Navigating cancer treatment and care when living with comorbid dementia: an ethnographic study.

Supportive Care in Cancer. Published online 21 Sept as doi 10.1007/s00520-020-05735-z (Open access)

Cochrane Review: Diagnosing dementia To mark World Alzheimer’s Day on September 21, the Cochrane Dementia and Cognitive Improvement Group have brought together and updated all the completed test accuracy reviews focusing on cognitive screening tests and questionnaires. Early diagnosis of a cognitive syndrome can allow people to make sense of their symptoms, and can help people plan their future while allowing access to treatments and support. This Special Collection also includes the supporting materials that they have developed for researchers and reviewers. First published in 2019 and updated in September 2020, it is available here: https://www.cochranelibrary.com/col lections/doi/SC000036/full

Young onset dementia and work This qualitative study explored the experiences of working-age Japanese people living with young onset dementia (YOD) to examine, from their perspective, possibilities for employment support. Four themes emerged: 1) crisis from continuing to work, 2) seeking support, 3) overcoming challenges to work and 4) reaffirming a sense of purpose by resuming work and social participation. Participants were able to continue working and socialising by letting others know and seeking support.

In the process of reaffirming a sense of purpose by resuming work and social participation, participants continued working or transitioned to socially active

lives after leaving their job with the support of work colleagues and professionals who understand YOD. The authors conclude there is a need for awareness raising in the workplace to promote understanding and significance of this professional support.

Ikeuchi S, Omote S et al (2020) Work‐related experiences of people living with young‐onset dementia in Japan. Health and Social Care in the Community (early view). Published online 6 September as doi 10.1111/hsc.13157

Non pharmacological interventions in care homes This rapid review aimed to consolidate the evidence for non-pharmacological interventions in care homes and determine outcome effectiveness. The final analysis included 38 articles and concludes that the strongest evidence for reducing stress and distress was related to the use of music, sensory stimulation, simulated presence and validation therapies. Exercise and light therapy improved or maintained activities of daily living, while cognitive stimulation and reminiscence improved cognition. It was also found that the strongest evidence for reducing emotional disorders related to music, psychological interventions and reminiscence.

Meyer C, O’Keefe F (2020) Nonpharmacological interventions for people with dementia: A review of reviews. Dementia 19(6):1927-1954.

Published online 7 Dec 2018 as doi:10.1177/1471301218813234.

Inequalities in dementia services Researchers investigated whether there were disparities in service provision for people from black, Asian and minority ethnic (BAME) communities compared to white British (WB) communities within a primary care led dementia service in the UK, comparing service provision for both samples around assessment, diagnosis and post-diagnostic support.

This study suggests that while many areas of service provision showed no evidence of inequality, important

36 The Journal of Dementia Care November/December 2020 Vol 28 No 6

differences remain including the time at which people present for assessment and the range of post-diagnostic services which are discussed.

Significantly more people from the white British sample were recorded as using or being offered more than one form of community support. Further research is required to establish the likely causes of these disparities.

Dodd E, Pracownik R et al (2020) Dementia services for people from black, asian and minority ethnic and white‐british communities: Does a primary care based model contribute to equality in service provision?

Health and Social Care in the Community (early view). Published online 21 Sept as doi 10.1111/hsc.13167 (Open access)

Outside activities This review summarised the evidence from interventions investigating the effects of out of care setting activities on people with dementia living in residential care. Of the 4155 articles screened, 11 articles met the inclusion criteria from nine different studies. The number of participants in the studies ranged from six to 70 people and lasted between three weeks and five months. The interventions were aquatic exercise, wheelchair cycling, art gallery discussion groups, an intergenerational mentorship programme, horse riding, walking and outdoor gardening. Overall, the studies indicated preliminary evidence of psychological, physical or physiological benefits.

However, the authors state that the low number of participants, the absence of a control group in all but three studies, and potential for selection bias, limit the generalisability of the findings. It concludes that activities outside of residential care have the potential to be effective at providing a range of benefits for people living with dementia however higher quality studies are required.

D’Cunha NM, Isbel S et al (2020) Activities outside of the care setting for people with dementia: a systematic review. BMJ Open 10-10.

Published online 6 October as doi 10.1136/bmjopen-2020-040753 (Open access)

BOOKINGS OPEN SOON

THURSDAY 12TH NOVEMBER | VIRTUAL EVENT Thank you to everyone who entered the 11th National Dementia Care Awards.

We at The Journal of Dementia Care were inspired by the outstanding quality of entries.

We are delighted to announce that the Gala Evening and Awards ceremony on 12th November will be held virtually in 2020. We envisage a ceremony that will celebrate the very best people in the dementia care sector, there are 16 fantastic awards to give away and we cannot wait to announce our amazing finalists, who will be contacted in October. The National Dementia Care Awards have proven to be hugely successful in recognising and rewarding the very best people who work in the hugely important field of dementia care.

We hope you understand our decision to make this change. We have been continuously monitoring the ever-changing circumstances surrounding Covid-19, and are focused on keeping our finalists, judges, sponsors and supporters safe during this time. As an exciting virtual event, we look forward to continuing to build on the success of the National Dementia Care Awards, celebrating all of you.

We extend a huge thank you to our Sponsors, without whom this celebration would not be possible.

SPONSORSHIP OPPORTUNITIES CAROLINE.BOWERN@INVESTORPUBLISHING.CO.UK

#DementiaCareAwards

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RESOURCES Resources A BBC World Service Music Memories project has been launched to expand its catalogue with more international tracks and start a “global conversation” to help trigger the memories of people with dementia. An international playlist of 50 iconic music tracks has been compiled with contributions from numerous countries all the way from Afghanistan to Argentina. Peter Rippon, executive editor at BBC Archive Editorial, commented: “The initiative is hosted on the BBC Music Memories website, which offers thousands of free music clips to stimulate the memory.” https://musicmemories. bbcrewind.co.uk

Care consultancy Meaningful Care Matters is offering a Free to Be Me dementia training programme with first-hand experiences of caring for people with dementia during lockdown.

The 10-day modular programme will be running until May and is designed to educate leaders in dementia care on how the quality of life of those with dementia can be changed for the better. Course leaders Luke Tanner and Sally Knocker focus on person-centred care and support in care homes, based on Meaningful Care Matters’ Butterfly Approach, which stresses that emotional needs are as important as physical needs. https://meaningfulcarematters.c om

Blogs I’m watching

by Mark Ivory Much has been written about rebuilding the economy in an environmentally sustainable way after coronavirus, but what about health and social care? Five authors from the climate lobby, including Richard Smith from the UK Health Alliance on Climate Change, put forward six steps for “building back better” in health and social care in the postCovid world. Writing in the BMJ blog they say: “A severe economic recession is beginning and the climate emergency is growing, bringing with it more severe heatwaves, floods and storms… The health and social care system is responsible for 6% of the UK’s greenhouse gas emissions and one in 20 journeys on the roads… [It] can have an important impact on the climate crisis.” But how? This year the NHS committed itself to reaching net zero carbon emissions “as quickly as possible,” although just how quick that will be is not clear. The authors outline their own “comprehensive and practical plan”, not just for the NHS but for the whole of health and social care. The essence appears to be that fewer visits to NHS facilities, more tele-consultations, better diets and more exercise to reduce health inequalities, and more knowledgeable patients will all help to reduce the health and social care carbon footprint. “Lockdown has shown us the critical importance of patients having the right knowledge and skills to manage their long-term conditions effectively, and just how much can be done to support this when it is prioritised,” the authors say. https://bmj.com

A sensory therapeutic product with an electronic heartbeat is to be brought to market following a successful research and evaluation exercise. (See article on pp32-34 of this issue.)

Backed partly by a crowdfunding campaign, the soft, comforting objects – called by the registered trademark HUG – will be made commercially available after they were shown to help people with advanced dementia. They are the result of Cardiff Metropolitan University’s LAUGH research programme. A new business, HUG by LAUGH, has now been set up with support from the university and assistance from Alzheimer’s Society. www.crowdfunder.co.uk/ hug-by-laugh-1

A 12-hour “chatathon”, in which Adam Smith talked non-stop with 56 dementia researchers to raise much-needed money for Alzheimer’s Research UK, invoked both joy and sadness in at least one participant. In her blog “Which me am I today?” about her life with dementia, Wendy Mitchell gives a link to her leg of the chatathon with Chris Roberts and Jayne Goodrick, but says she made the mistake of clicking on it to remind herself of what they’d spoken about. “The continual twitching of my face and movement of my hands I find so sad,” she comments. “I always used to look so calm in my previous life. The aura of calmness was a trademark, people used to say, but not anymore.” Even so, Wendy’s contribution remains as illuminating as ever if her video link is anything to go by. She herself remarks: “As you’ll see and hear., Adam was worried about filling the 30 minutes we had with him, but once you start us off, you can never shut us up!” https://whichmeamitoday.wordpress.c om/blog An interesting insight into the workings of the deprivation of liberty safeguards (DoLS) is given by “Quiet John”, who is based in an acute NHS trust and writes a guest post for the Small Places blog. The overwhelming majority of the trust’s DoLS applications are never authorised and simply “drift into irrelevance”, he says, often because the patient has been discharged while the application is pending. The upshot is that, even on a conservative estimate, in one large trust there may be “458 patients deprived of their liberty for an average of over three weeks for whom there is no effective external scrutiny,” Quiet John comments.

But will new arrangements for Liberty Protection Safeguards (LPS) to replace DoLS,

38 The Journal of Dementia Care November/December 2020 Vol 28 No 6

A free online introduction to music in dementia care has been produced by Musica Harmonising Healthcare (MHH).

Presented by MHH chief executive Rosie Mead, the “minicourse” is made up of videos and podcasts and takes around one hour to complete. It includes 10 “top tips” for using music in dementia care. Mead, who set up MHH in 2010 “out of a passion to integrate music into dementia care”, says she is on a mission to spread awareness of the benefits of music. https://musicamusicandwellbein g.thinkific.com A dementia screening app was due to be rolled out in October in a bid to help counter the fall in diagnosis rates during the

now delayed until 2022, be any better? LPS may mean NHS trusts dealing with authorisations themselves instead of requesting them from local authorities, and here’s the rub. As Quiet John plausibly argues: “Worries about hospitals marking their own homework seem misplaced when the teacher has almost never had the time or resources even to glance at it.” He foresees that LPS will bring a host of other challenges and he is less than optimistic about the outcome: “Blueprints drawn up by those who know little and care less are unlikely to produce happy results,” he concludes. https://thesmallplaces.wordpress.com Apart from being the 40th anniversary of Alzheimer Scotland, September was also World Alzheimer’s Month. So it was disconcerting to read in a post from “Margaret”, writing on Alzheimer Scotland’s Let’s Talk About Dementia blog, that the carapace of prejudice surrounding some employers remains as impenetrable as ever.

Diagnosed with frontotemporal dementia at the age of 51, her problems began when working for a large, well known organisation and her memory began to falter. She was rapidly shown the door. “When I contacted my union rep, I was told that if it had been cancer I would have been kept on, but because it was a mental thing I was let go and that was a good few months before I got a final diagnosis,” she writes. “For other conditions adaptations are made but with dementia it’s like you can’t work anymore.”

World Alzheimer’s Month is an international campaign to raise awareness and challenge the stigma around dementia. Let’s hope employers were listening. https://letstalkaboutdementia. wordpress.com

RESOURCES & EVENTS pandemic. The smartphone app, called Mindset, is the brainchild of a team of frontline doctors and medical students. It will allow patients to answer a series of questions and complete cognitive exercises similar to those administered by doctors in face-to-face consultations. www.meetmindset.com Neureka! is a mental health and dementia app which is being used to research how it might be able to facilitate early dementia diagnosis. It works by inviting users to play games on their phones so that the researchers can use the consequent data to analyse cognitive markers. The researchers, based at Trinity College Dublin Global Brain Health Institute, want as many people as possible to download the app from the Google or Apple stores and interact with it. www.neureka.ie Tips for care home managers on looking after themselves and their colleagues amid the stresses and strains of the pandemic are available from My Home Life. The free downloadable resource, Looking after yourself and those around you, is based on the experience of care homes and the strategies they have introduced to cope during

Digital’s Digital Pathfinders Programme, allows virtual visits to digital “innovation hubs”, so that providers can learn from others who have made innovative use of the technology. www.nationalcareforum.org.uk

“tough times.” It recommends simple techniques to decrease stress and anxiety. “If you’re feeling overwhelmed, try spending some time thinking about yourself, the things which are under your control - and things that aren’t,” it says.

“Recognise your limits - you can’t change what’s outside your influence.” https://myhomelife.org.uk Guidance from the NHS, Dementia wellbeing in the Covid-19 pandemic, is primarily for clinicians working with people with dementia, although it can be used by family carers and people with dementia themselves. It sets out adjustments and amendments to the dementia wellbeing pathway which are needed in response to the pandemic, highlighting priorities and actions for each step of the pathway. www.england.nhs.uk A digital project launched by the National Care Forum (NCF) is helping care providers understand the benefits of technology, how to build a business case for investment and how to successfully introduce, use and evaluate technology. The Hubble Project, for which NCF has received funding from NHS

The Care Quality Commission (CQC) has consulted with adult social care providers to set out expectations in relation to CQC inspections. According to the CQC, the new document – How to get the most out of inspection - addresses common misunderstandings and describes clear expectations with the aim of better joint working with care providers and ultimately better care services. www.cqc.org.uk On a special webpage the National Dementia Action Alliance (NDAA) publicises “the fantastic work that our members are doing” for people affected by dementia in response to the Covid-19 pandemic. https:// nationaldementiaaction.org.uk The National Institute for Health and Care Excellence (NICE) has produced a draft guideline Safeguarding adults in care homes aimed at helping care home staff and visitors be more aware of the signs of neglect and

abuse. The final version of the guideline is due to be published in February. www.nice.org.uk Applications have been invited

by Worcester University’s Association for Dementia Studies for a full-time PhD studentship looking at factors affecting regional take-up of Meeting Centres for people affected by dementia. The fully funded studentship aims to find out what lessons can be learned about their regional development. Application deadline is 9 November. www.worcester.ac.uk Training organisation OCN London is offering a new level 2 qualification in dementia awareness, aimed at helping paid and unpaid carers of people with dementia to develop their knowledge and understanding of the condition. It looks in particular at factors influencing interactions and communication with people who have dementia and is available at a discount to NAPA members, who pay £400 each rather than the standard fee of £1,000. Delivered online, the course is suitable for care home and home care staff at all levels, as well as volunteers and family carers. https://napa-activities.co.uk/ services/training

Events Many conferences 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 10-12 November UK Dementia Congress 2020 Organised by JDC, our 15th UK Dementia Congress will be online and bring together the latest ideas, research and innovations, as well as being a great opportunity for professional networking. Go to http://careinfo.org/events/. n 16-18 November Alzheimer Society International Congress Due to take place in San Francisco, the conference looks at

the science and therapeutic possibilities of dementia, as well as best practice in care.

More details at https://alzint.com/abstracts.html

sustain the workforce. Details at https://localgovernmentinsight.com

n 23 November Next steps for health and social care in Greater Manchester Online policy conference looking at health inequalities, service integration, innovative research and managing the Covid-19 response. Go to www.westminsterforumprojects.c o.uk n 25 November NHS Recruitment and Retention Briefing Broadcast live the virtual conference will examine how best to overcome staff shortages and

n 3 December Future of Ageing 2020 Virtual 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 Digital live broadcast looking at progress and sharing successful and sustainable interventions. Go to https://localgovernmentinsight.com. n 10-12 December ADI International Conference This Alzheimer’s Disease International conference goes

virtual this year and brings together researchers, scientists, care professionals and people living with dementia. Go to www.adi2020.org. n 9-10 March Research Conference 2021 Alzheimer’s Research UK conference on the latest findings in dementia research taking place in Brighton. Registrations from the cancelled 2020 conference have been transferred to this date.

Information at www. alzheimersresearchuk.org.

More information on JDC conferences at: http://careinfo.org/events/ tel 020 7720 2109 or email events@investorpublishing.co.uk

Vol 28 No 6 November/December 2020 The Journal of Dementia Care 39

Are you caring for a family member or friend with dementia?

“When you’re a carer, your con dence goes a bit. You get out of the habit of doing things for yourself.”

Terry and Maureen have been together for most of their lives. Maureen was 60 when she was diagnosed with Alzheimer’s disease and their plans for the future had to change. Terry had to be at home with Maureen.

Maureen has tonnes of energy and it can be a struggle for Terry to keep up with her. She can’t hold a conversation or make decisions; she’s stopped driving and hasn’t cooked for years. Their lives have completely changed, and Terry nds it hard that the person he grew up with isn’t there anymore.

Terry tried to get Maureen to go to a memory café, but as people there tend to be older, she doesn’t feel she’s like them and she doesn’t like Terry leaving her at the groups.

Although Maureen’s memory has declined over the past few years, she’s always happy. Terry is the one who gets annoyed when things go wrong. He’s not annoyed with her, it’s with himself. This is happening more as time goes on.

“It made me realise that what was happening wasn’t my fault and that I had to get over thinking it was. The anger that I felt and the problems I was experiencing were all perfectly normal…

Terry rst heard about Dementia Carers Count (DCC) on Facebook. His daughter saw some information about DCC’s three-day course and suggested that Terry registered.

“Anyone in a caring role should go on this course. Get in there and get as involved as you can. Talk to people, listen to people. No-one is judging you. Everyone is there to help you, or to learn.”

“Within minutes of arriving at the hotel, I felt relaxed and was chatting to everyone. There was a lovely atmosphere.

Some people were more nervous. For some, it was the rst time they’d left the people they care for in years.”

Dementia Carers Count is here to support you.

Terry says the best part of the course was meeting people in a similar situation and getting a glimpse into their lives. “There were no airs and graces and no judgement. It helped me a lot.”

020 3096 7894

info@dementiacarers.org.uk

DCC is a national charity dedicated to supporting family and friends caring for someone with dementia. They run free, professionally developed courses for carers. To register for a course and to visit DCC’s Virtual Carers Centre please visit dementiacarers.org.uk and follow DCC’s social media pages for updates.

@DemCarersCount

@DemCarersCount

Dementia Carers Count is the working name for the Royal Surgical Aid Society, registered charity in England and Wales: 216613