Journal of Dementia Care Jan/Feb 2021

For all who work with people with dementia

Vol 29 No 1 January/February 2021

Playfulness and mischief An intergenerational journey

Also inside this issue:

n How ‘gay bashing’ in the past can affect people now n Rare dementia support n Gaming for awareness

MEET THE WINNERS

category sponsors

Outstanding Dementia Care Resource 2020 Mark Carter, Care Visions Healthy Ageing YouTube Channel, Care Visions Healthy Ageing

The judges chose this winner because of the unique blend of contemporary online resources in a free accessible format with a great range of innovative content inclusive of the perspectives of people with dementia and their families with opportunities to demonstrate outcomes through research. The judges added that this was not an easy decision due to the diverse nature of the shortlisted initiatives and congratulate all finalists for making it this far in the proceedings.

Outstanding Dementia Care Innovation 2020 Lewis Hornby, Jelly Drops Water Sweets, Jelly Drops

Jelly Drops are a truly innovative answer to a difficult problem. The judges were impressed to see a physical health need and the dangers of dehydration recognised and addressed in such an imaginative and effective way.

Best Dementia Carer 2020 Emma Harper, Ty Enfys Care Home, Hallmark Care Homes

The judges were impressed with all of the finalists, but chose Emma as it was clear she is someone who goes above and beyond in her vocation. Emma takes care to provide sensory baths, tailored to the individual likes and dislikes of those in her care and the judges felt that this care and attention must be enormously comforting.

Best Activities Co-ordinator for People Living with Dementia 2020 Gemma Hutson, Lydia Eva Court / All Hallows, NorseCare

Gemma’s outstanding ethos, compassionate nature and creative whole home approach has been personally recognised by residents & their families. She’s also worked tirelessly to forge meaningful community involvement. Ask her about the 80 bikers!

Best Dementia Care Practitioner 2020 Kerry Lyons, Royal Bolton Hospital, Bolton NHS Foundation Trust

It was clear to the judges that Kerry demonstrates inspirational leadership in a challenging hybrid role geared to supporting people with dementia and family carers in both hospital and in community settings whilst improving dementia care in highly rated NHS Trust. Her colleagues value her contribution to service improvement and look to her as a role model for high quality multi-disciplinary dementia liaison practice in a hospital setting.

What made Kerry’s work stand out in this category was her skills in developing and mobilising a wide range of initiatives that have helped to deliver outstanding outcomes for people with dementia and their families.

Best Dementia Care Manager 2020 Gillian Pratt, Brook Court, Care UK

Gillian impressed the judges as a strong manager and leader in the best sense – practical, warm and caring towards her staff, her residents and their families. Taking staff with her she has reduced use of agency workers to zero for over a year.

Best Dementia Garden 2020 Inderpreet Hanzra & Emily Sheath, Lakeview Care Home, Hallmark Care Homes

The judges chose Lakeview because it’s so accessible, sensory and an integral part of residents’ daily lives.

It promotes connection with nature, creative activities and a culture of independence for wellbeing.

MEET THE WINNERS #DementiaCareAwards

THURSDAY 12TH NOVEMBER

careinfo.org/awards

Best Dementia Training Initiative 2020 Charis Hollyoake, Neurological Awareness Training, Elysium Neurological Healthcare

The judges chose Elysium Neurological Healthcare because of their passion and commitment and for their ability to clearly demonstrate how the impact of this training would improve the lived experience of people living with Dementia.

Dementia Care Champion 2020 Denise Carr, The Fremantle Trust

The judges chose Denise because they felt her warm and inclusive approach is exceptional and that she goes above and beyond to ensure the people she supports feel safe and relaxed; including gaining a qualification in Dementia Care, adapting the environment to be engaging and choosing music for each of her hairdressing clients based on their individual preferences. She is a great example of how all members of a team can make a real difference to the lives of the people they support. The judges added that they would love to get their hair done in Denise’s salon but thought she must be fully booked!

Outstanding Arts and Creativity in Dementia Care 2020 Grace Meadows, m4d Radio, Music for Dementia

The judges felt strongly that the M4D Radio was a fantastic concept and that it was available for all people living with dementia at home or in a care home.

Best Dementia Team 2020 Jan Bill, The Good Care Group live-in care team, The Good Care Group

The judges commented that all entrants were so different, but what made The Good Care Group stand out as the winner was the moving testimonials, and attention to person centred details, as well as the support to their staff in what is a very complex environment.

Exceptional Contribution by an Informal/Family Carer 2020 Suzy Webster

To recognise the valuable contribution of family or informal carers, this award is made by the Journal of Dementia Care to a person, or group of people, to acknowledge the difference they have made. This could be to a person with dementia, to a community or nationally. The judges chose Suzy Webster, for her passion in promoting good practice in care homes for older people, through all aspects of her work and her gentle, collaborative approach, while caring for her mother who has dementia.

Best Dementia Friendly Hospital 2020 Olivia Frimpong & Lydia Russell, Kingston Hospital, Kingston Hospital NHS Foundation Trust

The judges thought all the finalists were brilliant. They chose Kingston Hospital as the winner because of their exceptional commitment to improving the hospital experience for patients with dementia and their carers. In their achievements, they have demonstrated their underpinning philosophy – “the more you know about the background of the person with dementia, the better care you can give.”

Exceptional Contribution by a Person/People Living with Dementia 2020 Agnes Houston

This award is made by the Journal of Dementia Care to a person, or group of people, living with dementia who live and work with incredible passion and commitment to improve the lives and wellbeing of others living with dementia, and who inspire so many within the dementia community. The judges chose Agnes Houston because she is a warm, engaging and effective advocate for best practice and improving the lives of people with dementia since her diagnosis with younger onset Alzheimer’s disease in 2006 at the age of 57.

Best Dementia Care Home 2020 Beverley Manzar, Ebury Court Care Home, Ebury Court Residential Home

The judges felt that although all of the homes in this category were strong contenders, the Ebury Court stood out from the rest because their leadership clearly showed their passion for supporting people with dementia to live well, enjoying clubs reflecting their needs and abilities. Throughout this difficult time families were supported to maintain their relationships despite the restrictions.

For all who work with people with dementia

Vol 29 No 1 January/February 2021

n Project updates & viewpoints

How ‘gay bashing’ in the past can affect people now

Inside this issue...

16

14

In the modern world most of us accept sexuality as integral to personhood, but an LGBT+ person with dementia may struggle with memories of an intolerant past. Lynne Phair and Roy Wells reflect on the impact this can have on care and support

Gaming for awareness

16

It is vital to make sure that younger generations understand dementia and a new digital dementia awareness game is designed to help. Gary Mitchell and colleagues report on their “gamification” project

Getting Creative: a project to improve well-being for all 18

18

Patients in a Newcastle memory service, along with their caregivers and clinicians, were given the chance of “Getting Creative” thanks to a project run by the charity Equal Arts.

Kate Parkin explains how it worked

‘It’s changed my life just by giving it a try’

20

When Covid-19 struck, the Time and Place poetry project seemed doomed. Liz Jennings, Jess Shaw and Keith Oliver describe how it was rescued, drawing together creative writers from across the UK to become a national success story

n Features

32

Playfulness and mischief – an intergenerational journey 22 An intergenerational Christmas party held on an acute hospital ward sparked off plans for a whole new project. But would it be possible to overcome staff resistance? Jo James, Nicola Abraham and Elizabeth McGeorge describe what happened next

Rare dementia support in rural and remote areas

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The Rare Dementia Impact Project team is providing insights into the support needs and care preferences of people with rarer forms of dementia. Gill Windle and colleagues studied the benefits and challenges for those in rural and remote regions.

Living with cancer and dementia: care and treatment experiences

28

How can the needs of people who have both dementia and cancer be met effectively? Alys Griffiths and colleagues discuss their research findings, which cast light on the specific challenges of decision-making, navigating the system and offering person-centred care

The music died, but we’ll meet again with energy and passion

32

When coronavirus arrived, it felt like “the day the music died” to singing groups across Scotland. Diana Kerr set out to record and capture their energy and passion so that they can restart with equal vigour once the virus has been beaten

Cover photographs: Sincere thanks to photographers Akiko du Pont and Jo James, and to all involved in the work described on pp22-25.

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Regulars n Comment by Mark Ivory n News

n Dementia Diaries n JDC Asks

5 6 9 12

n UKDC reports

10

n Research reports

35

n Perspectives by Sally Knocker 17 n Books/Resources n Events

37 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

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© HAV 2018 Ltd ISSN 1351-8372

Journal of Dementia Care Advisory Board Caroline Baker, Barchester Healthcare Paola Barbarino, Alzheimer’s Disease International Kate Lee, Alzheimer’s Society Professor Dawn Brooker, University of Worcester Dr Nori Graham, Alzheimer’s Society and Alzheimer’s Disease International Tessa Gutteridge,Young Onset Dementia, Dementia UK Jo James, Imperial College Heathcare NHS Trust Rachel Niblock Dementia Engagement and Empowerment Project – 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, Dementia Pal Ltd 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, former carer, writer, editor and trainer

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

Dr Hazel Heath, independent nurse consultant: older people

Selflessness that shone out in the darkness Mark Ivory, Editor, Journal of Dementia Care o look ahead to 2021 is inevitably to hope for a better view of the world than was on offer during 2020. Of course, at our online UK Dementia Congress we heard about many examples of selflessness that shone out in the darkness, the extraordinary dedication of care staff, the resilience and ingenuity of so many people with dementia, and the generosity of charity donors during hard times. As Care UK’s Suzanne Mumford told UKDC and reiterates in this issue, “the pandemic hit us like a tsunami,” and staff who have been willing to go beyond the call of duty have been a vital part of the response.

Even so, as Suzanne also says, roll on the vaccine. Vaccines are already coming on stream, of course, and care home staff were at the front of the queue as we went to press, but there were delays in reaching residents and the over-80s more generally.

It will be many months before we can return to any semblance of normality, the word “semblance” being critical here.

Because we also have to question what “normality” will look like. Around onefifth of elderly people who get Covid-19 go on to suffer the effects of “long covid”, a variable collection of symptoms affecting major organs potentially stretching over many months. Enforced separation of families has resulted in social isolation and loneliness for thousands of older people, caused loss of physical function because they have moved around less, and accelerated cognitive deterioration in those with dementia.

At Congress we heard that people with dementia were “thrown under a bus in 2020” and often that’s exactly how it looked. We must never forget the 17,000-plus deaths involving Covid-19 in care homes, around a quarter of the total, but nor should we overlook the long-term effects of the draconian, if necessary, bans on care home visits. Alzheimer’s Society reported that its Dementia Connect support line has been “flooded with desperate calls” from families who say that loved ones have gone rapidly and irreversibly downhill.

Psychiatrist Dr James Warner gave a fascinating update during UKDC on medical and scientific advances in the prevention and treatment of dementia, in which he talked about the risk factors. Up to 40% of dementia is caused by modifiable risk factors, of which 3 - 4% arises from social isolation and 7% from “less education”.

How will this play out in the future? In Dr Warner’s words, “You have to wonder what the impact will be on our children today who are being denied education because of the covid lockdown. It might in 50 or 60 years’ time store up a problem for that generation.”

All this against the backdrop of a shaky economy, hollowed-out social care and a voluntary sector starved of funds. Hardly the prospect we would have hoped for as we take our first tentative steps into 2021 and one which will surely call for all the resourcefulness, dedication and determination so much in evidence over the past year.

T

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 29 No 1 January/February 2021 The Journal of Dementia Care 5

NEWS

News in brief Hypertension linked to brain damage High blood pressure in midlife is linked to brain damage in later life, says a new study published in the European Heart Jοurnal. The findings from the study of 37,041 participants, aged between 40 and 69 years, show a correlation between brain damage and higher-than-normal diastolic blood pressure, even when the latter is still within the “healthy” range. Dr Karolina Wartolowska, clinical research fellow at Oxford University, said: “Not all people develop these changes as they age, but they are present in more than 50% of patients over the age of 65 and most people over the age of 80 even without high blood pressure, but it is more likely to develop with higher blood pressure and more likely to become severe.”

The study was part-funded by Alzheimer’s Society, which said that the observed brain changes heightened the risk of dementia.

Diversity award for University of Worcester The University of Worcester, which includes the acclaimed Association for Dementia Studies, has won the inaugural Times Higher Education Award for Equality, Diversity and Inclusion. The judges were impressed by the university’s “sustained, whole institutional approach to equality, diversity and inclusion, which places students at the centre.” Professor David Green, vice-chancellor of the university which was also shortlisted for the University of the Year Award, said it was “deeply committed to helping people from all backgrounds and ages fulfill their own rich potential.”

Mortality rate for dementia fell in 2019 After increasing year-on-year for two decades, the mortality rate from dementia actually fell in 2019, data from the Office for National Statistics (ONS) show. In 2019, both the number of deaths due to dementia (66,424 deaths) and the age standardised mortality rate (115.1 per 100,000) were the lowest since 2016. The mortality rate was “statistically significantly lower” than in 2018, when it was 123.8 per 100,000 people, said the ONS. The decrease between 2018 and 2019 was driven by a fall in the number of female deaths, rather than males, and 65.4% of all deaths due to dementia (including Alzheimer’s disease) occurred in care homes. Alzheimer’s Society expressed surprise at the ONS findings.

“The data also doesn’t include deaths where dementia was a contributing factor, so we’re keen to explore the statistics further to better understand what lies behind them,” said policy head Gavin Terry.

Report on support services during pandemic Families are reporting that their access to specialist dementia support has “greatly worsened” during the pandemic, while the pressures of caring have continued or been exacerbated, Admiral Nurse charity Dementia UK says in a new report. In Facing it alone: experiences of dementia support, the charity explains the findings of research among family members, healthcare professionals and Admiral Nurses, in which the majority of family members said they felt “poorly supported” while GPs and fellow professionals said they wanted to help but faced “severe time and capacity issues to provide support needed to people affected by dementia and their families.” Dementia UK chief executive Hilda Hayo says in the foreword that the pandemic has increased the level of difficulty families are facing “without their usual support mechanisms of respite, peer group support and activities.” The charity has launched an “Only Together” campaign for better specialist dementia support.

YOD charity merger Voices of people with young onset dementia will be “amplified” following the announcement of plans to merge the charity Young Dementia UK (YDUK) into Admiral Nurse charity Dementia UK. YDUK director Tessa Gutteridge, who moves to Dementia UK as programme director for young onset dementia, said the merger would allow both organisations to make a “greater difference” to the lives of people diagnosed with dementia under the age of 65 and their families.

“Joining forces with

Dementia UK will help us amplify the voices of those dealing with this difficult condition and reach even more people with specialist advice and support,” Gutteridge added.

Both charities expected no initial changes to services but undertook to enhance them in future. Dementia UK CEO Hilda Hayo said they had worked well together for years and that the merger was a “natural progression,” adding that it would “greatly expand our knowledge, expertise and capability for supporting families facing young onset dementia.”

Controversy over DNACPR decisions Unprecedented pressures on care providers led to “do not attempt resuscitation” (DNACPR) decisions being “incorrectly conflated” with other decisions around critical care.

Early findings from a Care Quality Commission (CQC) review were published after evidence emerged that DNACPR decisions had been issued for groups of care home residents without individual consent in the early stages of the pandemic.

While the CQC said there was no evidence that such blanket decisions are still being made, it emphasised that DNACPRs and advance care plans should only ever be agreed with the

clear involvement of the individual or an appropriate representative.

“It is unacceptable for clinical decisions – decisions which could dictate whether someone’s loved one gets the right care when they need it most – to be applied in a blanket approach to any group of people,” said Rosie Benneyworth, primary medical services chief inspector.

“Sadly, in the experiences that people have generously shared with us there is very real concern that decisions were made which not only overlooked the wishes of the people they affected, but may have been made without their knowledge or consent.”

Group for LGBTQ+ people with dementia “Speak out with dementia” is a new online group for people who are living with a diagnosis of dementia, and who identify as LGBTQ+ (lesbian, gay, bisexual, trans, queer). It gives members the chance to express themselves and support each other in a safe environment where their experiences, their identity and their relationships are affirmed. Meetings are being held on Zoom. The group is supported by AD Advocacy, with funding from The National Lottery Community Fund Grant, and will be affiliated to the DEEP network. Speak out with dementia meets every week on Tuesdays from 5 – 6pm. More information from Lucy Whitman or Aimee Day at Speakoutwithdementia@gmail.com

6 The Journal of Dementia Care January/February 2021 Vol 29 No 1

Smart move: Activity plans to improve the mental health of residents at Woodstock care home, in Sittingbourne, during Covid-19 make creative use of the interactiveMe tablet. Marina Foreman, senior recreation and wellbeing lead at Woodstock, shows resident Barbara Woollett how to use the smart tech.

NEWS

£1bn promise for social care is ‘too little too late’ Chancellor of exchequer Rishi Sunak pledged “access” to an additional £1 billion for social care in his November spending review, but it drew condemnation from sector leaders.

Care England chief executive Martin Green said the money, much of which will have to be raised from council tax and will be split between adults’ and children’s services, was “too little too late”.

Sunak also appeared to row back from the government’s earlier promise to “fix social care” with fundamental reforms, talking instead of “sustainable improvement” in the sector.

“We’re concerned that the government’s view of long-term reform is now ‘improvement’ rather than ‘fundamental and comprehensive’ which was promised,” said Alzheimer’s Society research and influencing director Fiona Carragher.

“Where is the universal social care that’s free at the point of use, on the same basis as schools and the NHS?” Before the spending review, a report from the Commons Health and Social Care

Committee called for a £7 billion annual increase in social care funding immediately to avoid the risk of “market collapse”, followed by “urgent and sustained” investment.

Committee chair Jeremy Hunt said the cash injection would meet demographic and wage pressures as well as the “catastrophic care costs” faced by people with dementia.

“To address wider issues the sector needs a 10-year plan and a people plan just like the NHS,” Hunt said. “Without such a plan, words about parity of esteem will be hollow. We owe it to both the staff and families devastated by loss to make this a moment of real change.”

New guidance after storm of protest After a storm of protest from carers’ groups and charities, the government issued new guidance allowing closer contact between care home visitors and residents when lockdown was lifted in December.

Following a successful pilot scheme in the West Country each resident was allowed up to two visitors twice a week, but visitors had to be tested for coronoavirus on arrival using new fast-turnaround lateral flow devices.

The National Care Forum (NCF), representing not-forprofit providers, welcomed the move but questioned whether care homes had the capacity to meet testing requirements.

“NCF analysis suggests that addressing all the testing

Government visiting guidance (1 December) • Indoor visits where visitor has been tested and returned a negative result. Maximum of two designated visitors per resident.

• Outdoor visiting and “screened” visits continue • Visits allowed regardless of tier, except in an outbreak • Providers to design “individual visiting arrangements” based on the needs of residents and “what is possible” in the home • In tier one areas, indoor visiting allowed where visitor testing is not yet available, as an interim measure and subject to safeguards.

• In exceptional cases such as end of life, visits should “always be supported and enabled.”

commitments… will require an additional 3.6 million hours of care home staff time, currently with no additional resource to deliver this,” said the forum’s executive director Vic Rayner.

A warmer welcome for visitors was heralded in the government’s Covid-19 Winter Plan, which said it would be possible for them to “have physical contact with their loved one, such as providing personal care, holding hands and hugging.” But it is accompanied by safeguards such as wearing PPE and only applies to a maximum of two designated “constant” visitors per resident.

Inevitable limits on numbers of visitors who can be processed under the new regime mean that previous arrangements involving floorto-ceiling screens, outdoor visiting pods and window visits will continue alongside it.

Screened-off visits have been condemned by Alzheimer’s Society, whose CEO Kate Lee said “prison style” screens were “frankly ridiculous when you consider someone with advanced dementia can often be bedbound and struggling to speak”.

Awareness-raising over sports dangers As fresh concerns were raised about dementia risks associated with heading the ball in football games, Alzheimer’s Society launched its Sport United Against Dementia campaign to raise awareness and spearhead change. Dementia has also been highlighted as an issue for rugby players.

Ex-professional footballer and Society ambassador Robbie Savage has backed the campaign, which was launched following the deaths of Jack Charlton and Nobby Stiles with dementia and the dementia diagnosis of Sir Bobby Charlton, all former England footballers.

Alzheimer’s Society CEO Kate Lee said the charity had partnered with several sports on the campaign and wanted to see more research on the links between dementia and football, but cautioned that it would take time, “particularly when charities like ourselves have been badly hit financially by the pandemic.”

Meanwhile, the Professional Footballers’ Association (PFA) has set up a taskforce to examine the issue of brain injury diseases in football following criticism of its apparent failure to support the families of former players who have died with dementia.

The PFA said the new Neurodegenerative Disease Working Group would “ensure a more holistic support system is available for former footballers and their families.”

Special ceremony: Care staff at Foxholes care home in Hitchin were awarded the Dorothy Lefford shield for going beyond the call of duty in coping with the pandemic. Pictured (l-r) are Usha Gandecha, home manager, presenting care workers Gillian Lavender and Stella Burton with the award.

Vol 29 No 1 January/February 2021 The Journal of Dementia Care 7

NEWS

News in brief Risk of death from anticholinergics A university study finds that anticholinergic drugs significantly increase the risk of death in people with dementia. Commonly used to treat urinary incontinence, allergies and depression, anticholinergics like Diazepam and risperidone are regularly prescribed for people with dementia.

Looking at data for 25,418 people with dementia who were prescribed at least one dementia management medication between 2010 and 2016, the study found that only 15% had no “anticholinergic burden” – a measure of the cumulative effect of the drugs.

Strong case for prevention programmes Programmes to tackle smoking, high blood pressure and hearing loss would more than pay for themselves by substantially reducing the risk of dementia, UCL and LSE researchers have found. These interventions to improve public health could cut dementia rates by 8.5%, they said, resulting in savings to health and social care of £1.86 billion a year in England. The cost of the three interventions, as modelled in a paper published in The Lancet Healthy Longevity, would be £1.08 billion annually, but social care costs of dementia would fall by £866 million and family care costs by £1.05 billion, the study said.Senior author Professor Gill Livingston added: “We have found that there’s a strong case for implementing dementia prevention programmes. They are cost-saving for their impact on reducing dementia rates alone, without even factoring in the additional benefits in reducing other health issues such as stroke or heart disease.”

Audit reveals extent of pandemic disruption to hospital services An audit of hospital dementia services released by the Royal College of Psychiatrists indicates widespread disruption during the pandemic, with 49% of dementia leads surveyed reporting that dementia strategies and projects had been suspended.

Just 26% of dementia leads said that dementia strategies had been updated or created because of the pandemic. In terms of family contact, 90% of family carers questioned in the audit said they were not allowed to visit the person they cared for, while 43% responded that they were given no explanation about

visiting procedures.

Although 91 hospital leads said new methods had been introduced to communicate with carers using technology or liaison teams, six comments from carers said staff could not help with phone calls with the person with dementia or that the system did not work well for them.

While 15 comments from hospital leads indicated loss of specialist wards or patients with dementia being placed on wards not suited to their needs, 12 comments from carers expressed concerns about the treatment of the person with dementia.

Work in progress: Sylvia Williams, who lives at Avon Cliff in Bournemouth, makes Poppy the PPE nurse, the care home’s Halloweeninspired entry to a scarecrow competition and warm-hearted tribute to nurses working in the front line.

Social engagement study: More social engagement is good for the brain and helps to protect it against dementia, suggests a study from the University of Pittsburgh. It used brain imaging to study the effects of socialising on 293 people who lived at home and were 83 years old on average. Lead author Cynthia Felix said greater social engagement correlated with the better brain health.

“Our data were collected before the Covid-19 pandemic, but I believe our findings are particularly important right now, since a one-size-fits-all social isolation of all older adults may place them at risk for conditions such as dementia,” she said. The study, published in the Journal of Gerontology: Psychological Sciences, suggests that “prescribing” social engagement could help older adults to prevent dementia.

Improved support for end of life care Care home provider Care UK teamed up with Marie Curie to strengthen end of life care in response to coronavirus. As an end of life care charity, Marie Curie has been evaluating Care UK’s current training and practice, supporting home care managers to build resilience among team members, and offering care staff a space to share, reflect and learn.

“Although a confidential telephone support service has been available to all Care UK employees for several years, directors recognised that the past seven months have been like no other period in [our] history and that something additional was required,” said HR director Leah Queripel.

Infection prevention and control Infection and prevention control (IPC) inspections by the Care Quality Commission revealed a positive picture of care home practice. Speaking as the second surge of Covid-19 began, adult social care chief inspector Kate Terroni said most care homes were taking effective precautions against the risks. “Most care providers that we have inspected have demonstrated good practice which we will continue to highlight through regular publications,” she said. Care homes would be expected to discuss visits from relatives as part of individual care plans, she added.

• In Scotland the Care Inspectorate identified serious failings in how some care homes were managing the risk from coronavirus. In a fortnightly report to the Scottish Parliament, the inspectorate rated 31 care homes on their infection prevention and control practices, judging two to be unsatisfactory, eight weak, 10 adequate, seven good and four very good. This equated to nearly a third of these homes being judged either unsatisfactory or weak on infection control. Among the weaknesses identified were poor compliance with PPE and contamination in areas of homes.

Four notes led to a winning composition That musical ability can survive memory loss was amply demonstrated

by Paul Harvey, a former music teacher with dementia whose new composition was released as a single with the BBC Philharmonic Orchestra and topped the charts. Aged 80, he composed the piece after being given four notes to play by his son Nick. A clip of Paul improvising the piece on the piano went viral on Twitter, something he was able to achieve despite being diagnosed with dementia in 2019.

Proceeds from sales of the single were due to be split between Alzheimer’s Society and Music for Dementia.

8 The Journal of Dementia Care January/February 2021 Vol 29 No 1

Rise in deaths of women at home: Deaths from dementia among women in their own homes rose sharply between March and September, figures from the Office for National Statistics show. In England over this period there were 24,387 more deaths than average among both men and women in their own homes. In women, dementia accounted for a bigger increase in deaths at home than any other condition, up by 75% in England and 92.2% in Wales compared wth the five-year average. In men, the biggest increases were due to heart disease. A possible explanation for the increases is displacement from hospital to home: deaths in hospitals decreased by 40.6% in England and 25.5% in Wales in March-September. Alzheimer’s Society blamed the increases on the side-effects of lockdown, such as isolation, fear of the virus and suspension of services.

ONS death figures: After several weeks running below the five-year average, numbers of deaths in care homes rose above it in the week ending 16 October and by week ending 20 November there were 180 deaths above the average across homes in England and Wales. Office for National Statistics figures showed there were 42 more deaths in care homes involving Covid-19 in the week to 20 November when compared with the previous week. Up to that date there were 17,319 deaths in care homes involving Covid-19, 27.2% of the total.

Increase in use of antipsychotic medication in first phase of Covid The proportion of patients with dementia being prescribed antipsychotic medication “substantially increased” during the first phase of the pandemic, researchers say.

While the proportion of registered patients prescribed antipsychotics varied between 9.28% and 9.47% during 2018/19, this increased to between 9.69% and 9.99% over the period from March to July this year. The data lend credence to anecdotal reports of increased antipsychotic prescribing to people with dementia during the pandemic, says the Lancet Neurology paper on the study, led by Professor Robert Howard of University College London.

It speculates that some of the increase relates to delirium

management and palliative care, “although most of the increase was probably in response to worsened agitation and psychosis secondary to Covid-19 restrictions,” it adds. Among these are care home residents confined to their bedrooms, and cessation of communal activities and family visits.

Fiona Carragher, Alzheimer’s Society director of research and influencing, was reported as saying that antipsychotics were an “archaic and dangerous” way to treat dementia-related behaviour.

“People with dementia have already been worst hit by coronavirus, dying in their thousands,” she commented.

“We must prevent any further devastating knock-on effects.”

CQC annual report on health and social care The long-standing need for reform, investment and workforce planning in social care has been thrown into stark relief by Covid-19, the Care Quality Commission (CQC) said as it launched its 2020 annual report on the state of health and social care in England. The CQC said the issue needed to be “urgently addressed” and also pointed to its Market Oversight report earlier in the year which found that the sector was “fragile” because no long-term funding solution for social care had been forthcoming.

“An important legacy of this

crisis must be the value that we place on social care as an essential service, core to delivering the frontline response to this crisis, and to ensure everyone understands that people who work in social care are keyworkers, in every sense,” says the State of Care report.

CQC chief executive Ian Trenholm added: “Covid is magnifying inequalities across the health and care system – a seismic upheaval which has disproportionately affected some more than others and risks turning fault lines into chasms.”

Leisure activities and dementia: Research published in the journal Neurology finds that people taking part in leisure activities in their mid-50s did not reduce their risk of developing dementia over the following two decades.

But the study also found that those who continued to take part in such activities by the time they reached their mid-60s were at reduced risk, while those who lacked interest in the world around them were at increased risk.

The findings emerged from the Whitehall II long-term health study, which recruited people working as civil servants in the 1980s and has been looking at activities like gardening, going to the pub and seeing friends. “The research suggests changes in the participation in leisure activity in your mid-60s may be an early sign of dementia, but not one specific activity was found to be an indicator or a risk factor for the condition,” said Dr Sara Imarisio, head of research at Alzheimer’s Research UK.

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

This time, three of the Diarists talk about how they – and others – have been keeping busy and positive during the pandemic. Cycling, art, woodcarving, card-making, gardening and cooking are all helping.

Firstly, Peter Berry explains: “Virtually every day I cycle round our local country lanes, hardly seeing any people at all. We are still able to have the odd ‘cafe stop’ and takeaway coffee … and doing about eight hundred to a thousand miles a month… I suppose that I’m very fortunate because lockdown can make you lose your way a little bit… I suppose that what I’m trying to say is ‘I’m not letting lockdown get me down’.”

Next, Dreane Williams reports: “I have gone through a bit of a rough time myself with the inevitable fog descending, and this feeling that I’m stuck in glue, finding it difficult to move on. But, on a positive side, although the government seems to have forgotten about us, it’s wonderful when you think of everything we are doing as a community. A community of people with dementia. There’s Fran teaching people to paint, there’s George teaching whittling, there’s Gail teaching… well what doesn’t that woman teach?! I’m so impressed with Dory and her allotment, it’s tremendous. It just goes to prove that, just because we have dementia, and we might be the wrong side of twenty-one, we don’t just sit in a chair dribbling. We try to get on with our lives and find something positive in all these days of negativity.”

Finally, Melvyn Brooks has been experimenting with cooking: “I’ve been trying a few things … I did a tarte tatin, it’s an upside-down pie. I made it from my next-door-neighbour’s pears… Oh, it was absolutely fantastic, it turned out really well. I didn’t make the pastry, but hey ho, can’t do it all!

Prepared it all… put it in the oven and I took it to the man next door, whose pear it was, with some ice cream on it. Nice big bit for him because he’s not very well, he’s got cancer and he’s 86.

[And] I made steak and kidney suet pudding, I made that from scratch. I got the meat and the kidneys from the butchers and then done the suet. Put it in the old basin, cooked it for about five or six hours...”

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 29 No 1 January/February 2021 The Journal of Dementia Care 9

lzheimer’s Society’s new CEO Kate Lee admitted at UKDC that losing 25% of the charity’s annual income because of the pandemic had been a “huge blow.”

Although less than the £40m financial impact originally feared, predicted losses of £22 £27 million this year meant that 400 staff had been placed on furlough, 250 had been made redundant and new research had been put on hold.

“The last six months has been all about survival, but we have now successfully stabilised the organisation by bringing our expenditure down by the amount of money we’ll be losing,” Lee said.

“Before we think about how we want to regrow, it’s really important that we get our head around what a new, smaller, leaner and more agile organisation might look like.”

Lee sees the charity focusing its energy on making a difference in key areas, such as support around diagnosis, lobbying government, and helping families avoid crises in care through the Dementia Connect support line, calls to which have shot up. And she wants it to be the “partner of choice” in the dementia sector.

“I want us to be an organisation that plays very nicely in the sandpit. I’m not sure we always have been to date and I want to move on from a culture that says if it wasn’t invented here, it’s not any good. I just don’t believe that’s true.”

Although the charity will have to streamline its offer, Lee argues that it will need to reach more people, including ethnic minority groups, people in poverty and those without digital access.

“We need to be an organisation that’s here for everybody, not just those who are easy to reach or easy to hear, and that is a huge challenge for all of us over the coming year.”

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Global perspective Could worldwide progress in the care and treatment of dementia be severely set back by the pandemic? Alzheimer’s

TUESDAY 10TH – THURSDAY 12TH NOVEMBER 2020 VIRTUAL EVENT

This year, as with so many other events, the UK Dementia Congress went online – but this didn’t get in the way of a wide range of presentations and great attendance. Here we present brief reports on some of the highlights Disease International CEO Paola Barbarino reminded viewers that the World Health Organisation global action plan on dementia had been unanimously agreed by members in 2017, but she insisted that there still had not been an 1adequate focus on noncommunicable diseases. “Right now we are concerned that the progress made under the global plan will be reversed by Covid19 on the national and international level,” she said. o Barbarino called for the dementia care sector to “pull i together as a movement,” adding: “We are concerned that the rights of our constituency have been trampled and that governments could deprioritise dementia because they’re • Pa putting a lot of money and effort into Covid-19. We cannot forget that dementia is a global health priority.”

Cognitive rehabilitation A three-year programme funded by Alzheimer’s Society is revealing the full potential of cognitive rehabilitation (CR) to help people with dementia learn and relearn skills for everyday living.

Giving the Tom Kitwood Memorial Address jointly, Jackie Pool from Sunrise Senior Living and Professor Linda Clare from Exeter University discussed phase two of the GREAT-CR research project, in which people with dementia living in care homes have been shown to achieve significant rises in attainment levels. Almost 30% of people improved their

10 The Journal of Dementia Care January/February 2021 Vol 29 No 1

cogntive scores while 60% maintained their existing cognitive level for a whole year.

Clare described how participants in the earlier research trials had wanted to become more independent, relearning tasks like operating the washing machine and using the phone, or just becoming more confident. “We’re starting to run online courses for aspiring cognitive rehabilitation practitioners,” she said.

“I’d like to think that Tom Kitwood would have taken a positive view of our personcentred GREAT-CR approach and its potential to enable people with dementia to live their lives to the full.

“I would really like to see services use a rehabilitationbased model to provide positive support from diagnosis onwards rather than just reacting to problems or monitoring how people’s abilities are declining.”

Medical advances In a wide-ranging talk on medical and scientific advances in prevention and treatment, consultant psychiatrist Dr James Warner speculated about the effect of school closures on the children as they reached old age in several decades’ time. Lower levels of education in early life were thought to account for 7% of dementia incidence, he pointed out: “You have to wonder what the impact will be on our children today who are being denied education because of the Covid

lockdown.” He said that research projects around the world were looking at 121 medications, many of which aimed to reduce amyloid levels in the brain. “What is much less clear is whether reducing amyloid also leads to a reduction in dementia symptoms. Up to now results are not very promising - 14 trials were stopped in 2019 because of toxicity or lack of efficacy.” One apparent exception was aducanumab, now being considered for regulatory approval in the US. “Some would say the application for approval is a premature step,” Warner commented. &

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Young onset dementia Services for people with young onset dementia (YOD) remain patchy with in many cases little continuity from diagnosis to post-diagnostic support, Professor Jan Oyebode said..

Oyebode was reporting on the findings of the Angela Project, a major study of young onset, which found that only 18.1% of people surveyed received a diagnosis in specialist YOD services while 17.1% were diagnosed in older people’s mental health services.

“There was a lack of followup services – 42% received no follow-up appointment in the first six weeks after diagnosis,” said Oyebode, from Bradford University’s Centre for Applied Dementia Studies.

She called for further specialist YOD services to be commissioned, adding: “Where

UKDC in brief ‘Setting our sights high’ In her talk for UKDC care minister Helen Whately pledged that work on the government’s new dementia strategy - replacing the 2020 Challenge which originated during David Cameron’s premiership - would continue apace. “As we come through this pandemic, our job is not only to make life better for those living with dementia, important though that is, but also to set our sights high on a future when we’ve not only beaten covid but beaten dementia too,” she said.

A screenshot from the live session Care in the time of Covid. L to R from top, Jill Davidson, Fiona Carragher, Chris Maddocks, Jo James, Dawn Brooker

diagnosis was in memory clinics or neurology, there was little continuity from diagnosis to post diagnostic support.

Generally, people with YOD received very few services.”

Care in the time of Covid: Tales of the unexpected In this plenary session Trevor Salomon talked movingly about his struggles to see his wife, who has been living with Alzheimer’s in a care home since May 2019. “Everything was going well until Covid and lockdown struck,” he said at UKDC, adding that he had had to be “pleasantly assertive” to be able to see her at all.

Salomon agreed with hopes expressed during the discussion

by Keith Oliver, Alzheimer’s Society ambassador, who spoke about the “fractured society” revealed during the year.

“People with dementia in care homes were thrown under a bus in 2020 and I’m really hoping that in 2021 we really do come together,” Oliver said.

Isabelle Latham, from the Association for Dementia Studies, hoped it would lead to long overdue recognition of the sector. “The powers that be must see that social care can no longer be treated as the poor cousin of the NHS,” she added.

Suzanne Mumford, who leads on quality development at Care UK care homes, pointed out the “extraordinary lengths” to which staff had gone in supporting residents: “Our colleagues are exhausted, but they’re ready to give even more now we’re entering a second wave.”

Asked about the government’s cautious care home visiting guidelines then in operation, she admitted that Care UK stretched them to the limit. “When residents are extremely distressed, family can come so that they can spend time together. If people have been together for 50 years, can we deny them the opportunity to be with their relative?”

Jo James, a consultant nurse at Imperial College NHS Trust, said blanket bans on hospital visiting had been imposed without justification. “Would visitors really have posed a greater risk than a nurse going home to her family?” she asked.

James also questioned the lack of access to hospital services during the pandemic.

“There was less access for people with dementia than for those who didn’t have dementia, which was not based on robust clinical judgement, and it seemed to become a policy that we would keep them out if we could,” she said. “It seemed to me to be discriminatory and we need to ask some hard questions to the NHS and the government about what really happened.”

See JDC Asks, pp12-13

Fragmented care system that has utterly failed Reflecting on the impact of the pandemic Alzheimer’s Society policy chief Gavin Terry told UKDC that it showed just why dementia support had to be reinvented. “We’ve been shocked and saddened that people affected by dementia have been hit hardest by ‰

Ethnic minority communities need services “When covid hit us in March, my mum was confused and worried,” said Jag in a presentation by carers group tide, Together in Dementia Everyday. Jag, who has struggled to find Punjabi speaking paid carers for her mother, wanted to dispel the myth that ethnic minority communities “look after their own”. Her mother had to be hospitalised: “Because of lockdown, I wasn’t able to be there, so I spent seven days on the phone talking to different nurses, various medics, getting different information. I wasn’t greeted with empathy by any of them – no empathy, no nothing – because they had so many covid patients,” she said. “While large organisations may think that communities are looking after their own, the communities are thinking there are no resources out there.”

DEEP moments Contributing to a series of “postcards from these strange times,” DEEP members reflected on the virus and on the experience of making “DEEP Moments” films. “The main thing for me is that people get a chance to see us as people the same as them really,” says one contributor to the films. Another says: “Those days of sticking in the back room have gone.” Wendy Mitchell commented that at the start of lockdown, “I was in panic mode, depressed, just as I was when diagnosed.” Then she began to fear the end of lockdown: “Would I lose the skills I had held on to so tightly, to be able to travel all around the country by myself?” But, later on, she realised that adaptation was the key to survival. “Let’s not let the virus break our spirit, our human need to interact and find joy in difficult times,” she said.

New way of working, with ‘webside manner’ “We know that the dementia diagnosis rate has slipped with the cessation of activity in a number of NHS services including memory clinics,” admitted Professor Alistair Burns, national clinical director for dementia. Estimates suggest that diagnosis rates have fallen from 67% to 63% during the pandemic but Burns insisted that referrals to memory clinics were increasing again and that different ways of working could restore diagnoses to former levels. Remote consultations and “virtual” diagnoses had been actively examined during the pandemic, he said.

“We know that inevitably waiting lists have lengthened, but by exploring novel and slightly different ways of making the consultation and diagnostic process we’re confident that these waiting lists will be looked at… The NHS is investing in training for staff in this new way of working – it’s being called a ‘webside manner’”.

No guidance for extra care housing As in residential care, panic and confusion were commonplace in extra care housing developments as the pandemic took hold. But there was an added complication: no government guidance for extra care housing on how to cope. “Very few plans survive first contact with the enemy,” said Housing 21 extra care director Kris Peach, “and that was certainly the case - a sense of panic everywhere, not quite sure what the best course of action would be. It was clear that, when the government got round to realising there was a really scary thing happening in residential homes, extra care was not on the agenda at all.” Peach described how Housing 21 had got a grip on the situation, acquiring a three-month supply of PPE and adapting procedures from cleaning premises to personal care. “We’re better equipped to face the enemy now but we must continue to be vigilant and not relax as we move forward.”

Vol 29 No 1 January/February 2021 The Journal of Dementia Care 11

‰ coronavirus,” Terry said, highlighting findings from a Society report, Worst hit: dementia during coronavirus.

Terry added: “More than a quarter of those in England and Wales who died had dementia, which means it’s been the most common preexisting condition for coronavirus deaths. Covid-19 has exposed a fragmented social care system which has utterly failed. The legacy of the pandemic must be a commitment to a universal social care system, free at the point of use that provides every person with dementia with the quality care they need. Then and only then will be finally see social care put on an equal footing with the NHS and no longer seen as the poor relation which is neglected and forgotten.”

A delicate balancing act in care homes A session on the impact of coronavirus in care homes (The delicate balancing act: when keeping people safe impacts on quality of life) with Sally Knocker and Luke Tanner from Meaningful Care Matters, included a manager’s perspective from Helen Walton, Church Farm Care, and a relative’s view from Kate White.

Helen: “We’re really vigilant about PPE, staff working only in one area and not having breaks together. But we are clear that two metre distancing with people living with dementia just isn’t possible. Family members (people living in the home) need our love and we can’t lose affectionate touch.”

Kate : “The thing I’ve noticed about the visits was the importance of the person who brings John to the visit. The first one was after 17 weeks of not seeing each other so it was a powerful moment. The member of staff was able to hold John’s hand and stroke his hand, and say

“Isn’t it lovely John, Kate is here.” She was kind of bridging the gap of all those weeks. She was more in touch with what John needed, and she provided a transition between the visit and later on, when she could remind John of some of the lovely moments.”

‘Left in the lurch’ by NICE Terms like “challenging behaviour” and “behaviour that challenges” are falling from favour, but there has been little agreement on a new term, except perhaps in Scotland where “stress and distress behaviour” has been widely adopted.

Professor Ian James, from Cumbria, Northumberland, Tyne & Wear NHS Trust, carried out an online survey and discussions among practitioners that ultimately landed on the term “behavioural and emotional expressions of need.”

More consultations are due on the term, but the survey also made clear widespread dissatisfaction with NICE’s 2018 guidelines on dementiarelated behaviour and its failure to provide sufficient detail on non-pharmacological options and their evidence base.

“I think we were left in the lurch [by NICE]; potentially there may be people using pharmacological options because they’re a wee bit confused about the exact nature of the recommendations,” James said.

He outlined progress on updating guidelines from the British Psychological Society, which will provide practical evidence-based guidance on non-pharmacological approaches.

But he called for more agreement on the nature of these approaches: “If I say dance therapy, I may have something very different in mind from you, but until we standardise these approaches we’re going to have problems with the evidence base.”

More reports from UKDC on p39

12 The Journal of Dementia Care January/February 2021 Vol 29 No 1

JDC asks...

What has mattered for people living with dementia in the time of Covid-19? What have been the tests (and possibly triumphs) of such an unexpected year? am a person living with vascular dementia, Parkinson’s disease and Lewy body dementia. Life before lockdown was a busy one for me as I travelled the country giving talks to raise awareness of dementia. When lockdown came in March and I was told to shield by my GP, it felt like bereavement, a huge loss.

In the first two weeks I was climbing the walls and felt like a prisoner. Very quickly my anxiety levels went sky high.

I was scared of catching coronavirus. The good thing was during the summer months my garden got a lot of attention and I was able to spend time outdoors.

But on one of my rare ventures out to get an ice cream, I was shocked that people weren’t keeping a physical distance between themselves or with me. I had an anxiety meltdown.

At the end of July, I was admitted to hospital with covid-type symptoms. Despite two negative tests I was admitted to the covid ward. I was moved between rooms four times in four days, and I wasn’t allowed visitors or to leave my room.

Staff came in wearing full PPE, so I had no idea who was entering my room. I wasn’t getting my Parkinson’s medication on time, which caused hallucinations and worsening of symptoms. I

I

never received a diagnosis.

Not many highlights but lots of low times. No one was there to help with anxiety and my depression was worsened by lockdown.

Chris Maddocks is a Dementia Diarist ne of the advantages of having worked in dementia care for as long as I have is that not much surprises me. I have witnessed most challenges in the last 40 years, and while there is never a standardised response to the things that people raise, at least I usually have some “case examples” to draw on. I can usually think of something useful to suggest in most situations.

When lockdown came upon us last March, though, I found myself thinking what the heck could I do to help or even to advise. I remember having a conversation with a care home manager on 26 March about how she was going to maintain person-centred care in the home that she managed.

I literally said, “I don’t know what to advise you to do”. In sum, 2020 was a truly dreadful year for all those living with dementia, their families, friends and for those working in health and social care.

What has happened, however, is that people have found ways of adapting their lives. People have refused to throw in the towel to say that

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From left: Chris Maddocks, Dawn Brooker, Trevor Salomon, Isabelle Latham and Suzanne Mumford

personhood only matters when we happen to be infection-free. People have found ways of connecting, of working around, of keeping their spirits up and of advocating for those whose voices don’t get heard.

What I have done is to listen and learn and to amplify these lessons far and wide. What has mattered at this time, is what has always mattered. People matter.

Professor Dawn Brooker is director of the Association for Dementia Studies at the University of Worcester hen lockdown hit my wife Yvonne’s care home, I set myself two objectives, namely, to ensure I could get to see her, whatever that might mean, and to be on top of what was happening in the care home.

At my request, weekly WhatsApp and Facetime video calls were introduced in May for family members to be able to see and speak to their loved ones and at the same time the manager started Zoom outreach calls to keep everyone informed of what was happening in the home.

It’s very important to have a good relationship with care home management and staff but equally to be pleasantly assertive when necessary. For example, when window visits, which started in July, were twice cancelled due to staff being tested positive, I pushed back asking for scientific evidence that Covid19 could be transmitted through glass and each time the decision was

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rescinded within 24 hours.

On my weekly window visits with Yvonne, I take her pictures of our nine-month-old grandson whom she last held back in February. She doesn’t understand who he is but is excited to see the face of a baby. I also take her a packed picnic lunch and any other treats I can think of.

She most definitely still knows who I am, but I haven’t held her hand, given her a hug or a kiss since March. If she could climb out of the window when she sees me, she absolutely would.

Trevor Salomon is carer for his wife Yvonne ver the last nine months I have had countless discussions with health and care staff endeavouring to achieve the best for people living with dementia during the pandemic. Four things have stood out in the many tests and triumphs they’ve recounted.

Firstly, workers have needed to repeatedly go above and beyond the call of duty to keep things as comfortable and safe for people as possible.

Whether taking extra shifts, starting collections, or staying in caravans in the carpark of their workplace, Covid-19 has shown the deep commitment much of this workforce has to their relationships with people living with dementia.

Secondly, extraordinary levels of teamwork have been required to fill gaps in services and need whilst simultaneously supporting workers to manage their own

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fears. Covid has demonstrated more than ever that we are all connected and that outcomes of wellbeing for people with dementia are only possible if the wellbeing of staff and community is in place as well.

Thirdly, the workforce has needed to absorb emotional turmoil from all quarters and take responsibility for situations that were not of their making and could not have been predicted. This occurred in the context of a lack of external understanding about what was being faced, lack of clarity about what was expected and lack of esteem for the work being done.

Finally, covid has illuminated the significant emotional intelligence and resilience required to work in this field and has drawn significantly on individuals’ personal resources. In short, what has mattered for people living with dementia in the time of covid is what has always mattered: the quality, commitment and compassion of the people who support and surround them and their families.

Isabelle Latham is senior lecturer at the Association for Dementia Studies, University of Worcester he Covid-19 pandemic hit care homes like a tsunami.

In the early days we were provided with minimal guidance describing how the virus would almost certainly result in fatalities. The British Geriatric Society encouraged GPs to triage residents according to their frailty scores

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based on co-morbidities and complete do not resuscitate forms for the most vulnerable.

Over 70% of people living in care homes across the home nations live with dementia, the majority with multiple comorbidities – it felt like our residents were being given a death sentence. Knowing little about the virus we were then given the news that, to protect the NHS, elderly people in hospitals would be placed in care homes with little or no testing, increasing the risk of cross-contamination to our extremely vulnerable populations.

Families and friends were instructed not to visit.

Suddenly it felt like all that we have learned about personcentred dementia care over the past 25 years was erased.

There was no consultation with people with dementia, their families or the specialists in providing care for people in care homes.

These draconian measures reflect a complete disregard for the human rights and equality of people with dementia and their families.

More than nine months later we are better informed about the virus and we know how to nurse people so that the majority survive, but we still face the punitive restrictions to visiting which are resulting in residents withering away before our eyes. Roll on the vaccine, but in consultation please.

Suzanne Mumford is lead quality development manager at Care UK

Vol 29 No 1 January/February 2021 The Journal of Dementia Care 13

How ‘gay bashing’ in the past can affect people now In the modern world most of us accept sexuality as integral to personhood, but an LGBT+ person with dementia may struggle with memories of an intolerant past. Lynne Phair and Roy Wells reflect on the impact this can have on care and support ometimes the ability to express oneself or communicate needs becomes difficult for a person with dementia, potentially giving rise to significant problems in understanding the individual’s experience of care.

A vital component of this understanding is learning about that person’s life story.

It is integral to enriched care planning and assists in supporting them to live well (May et al 2016). Part of this life story will be their sexuality.

These days, someone’s sexuality is accepted by most of us as intrinsic to their character and personhood. Same-sex marriages are part of our society. For most health and social care professionals this is the norm and the history of the struggle for gay rights may be merely an abstract historical fact.

For a LGBT+ person living with dementia, on the other hand, memories of the past and the fear and distress they experienced may be very real and could affect their ability to understand the present. They may find it hard to accept personal care or understand the actions and comments of care staff.

It is estimated that between 5 and 10% of the care home population are from the gay, lesbian, and bisexual community (Heath et al 2018), so truly understanding the emotional journey for a person living with dementia who is

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n Lynne Phair is an independent consultant nurse and Roy Wells is a retired mental health nurse

gay is as important as knowing their factual history as part of their life story.

Writing down a life history and knowing the life story of a person undoubtedly improves the quality of care. But merely knowing a history and really understanding the impact that history might have had on them in the past or might be having on them in the present are two different things. Building up an individual life story profile that takes account of both of these things requires skill and insight (May et al 2009).

A possible key to understanding behaviour Skilled dementia care must include understanding not only a person’s life story, but what the life story might have meant for them in a different social climate. For example, it may be key to grasping the reasons for distress behaviours. Observing these behaviours and thinking about what the person might be communicating or the reasons why they might be feeling emotions that they are unable to express is critical to good dementia care.

The co-authors of this article worked together as community mental health nurses in the 1990s, when Roy taught Lynne about life as a gay man and his experience in early adulthood

when being himself was illegal.

Roy does not have dementia, but he knows exactly why professionals should have a sense of a life history “from the inside” and not just as a set of biographical facts.

For a gay person growing up in the postwar years, life was not easy. Homosexual acts between men were forbidden by law and could be punished by life imprisonment. Police forces employed surveillance and agents provocateurs to entrap gay men.

Young people were expected to live not only in line with their own wishes but also within the expectations of family and society. As well as the law there were many moral and social pressures to conform. These ranged from social snubs and disapproval from neighbours, at one end of the scale, to denial of housing and employment opportunities at the other.

Eccentricities of dress or appearance could lead to dismissal from jobs.

Open abuse and persecution For disapproved minorities, open abuse, persecution and police harassment were commonplace. Sex was not talked about in polite society: it was seen as being about procreation, not pleasure, and homosexuality was widely

Skilled dementia care must include understanding not only a person’s life story, but what it might have meant for them in a different social climate

14 The Journal of Dementia Care January/February 2021 Vol 29 No 1

regarded as a perversion along with oral sex and masturbation. Unmarried mothers and divorce were scandalous.

“Gay bashing” regularly occurred and there was usually no action on the part of the police against the perpetrators except perhaps in cases of murder. The legislation, the Labouchere Amendment, was used to prosecute homosexual men for what the law termed gross indecency. It meant gay men were vulnerable to blackmail, and it was known as the “blackmailers charter”.

Jokes belittling homosexuals were common and derogatory terms such as queer, pansy, bumboy, shirt lifter and poofter were prevalent. Social disgrace is known to have led to suicide in many cases, although the true cause usually went unrecorded.

A solution for some was to bow to social and family pressure and lead a heterosexual life, marrying and raising a family, and being either homosexually celibate or seeking clandestine sexual contacts. Gay men on the cottaging and cruising scenes knew a large proportion of participants were married men.

One way of deflecting suspicion was to become aggressively homophobic.

Homosexual women were similarly despised, although sexual contact was not criminalised as it was for men, and the terms lesbian, lezzie and bull dyke were all used as pejoratives. They were considered predatory to teenage girls, just as their male ‰

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‰counterparts were thought to be predatory to young boys.

Homosexuality among men was decriminalised in 1967, the right to a civil partnership became law in 2004 and gay couples only got legal rights to pensions, inheritance and other rights assumed by heterosexual couples in 2006.The now common celebration of same sex marriage was not legalised until 2014.

According to Office for National Statistics figures (2014), around 60% of the care home population is aged 85 or over. These men and women were born in 1936 or before, so would have reached sexual maturity in the postwar years when the oppression we have discussed was rampant. Our cohort had their childhood in this repressive ambience.

Some of the adults in our care are still “hidden”, carrying the old guilt and fearful of letting their true selves be seen, unable to risk chancing a relationship or respond to an advance, and frightened of making a slip that will expose them to danger. It can cause intense feelings of social isolation.

When supporting a gay person with dementia who is prone to distressed behaviour, it is important to consider all aspects of their lives and whether they are recalling incidents or attitudes from the past, misunderstanding the use of words or nonverbal communication, or misinterpreting situations. If staff have an understanding of what lies behind any merely factual information they have about a person, they will be better placed to support them and look for solutions to their difficulties. n References May H, Edwards P, Brooker D (2009) Enriched Care Planning for people with dementia. London: Jessica Kingsley Publishing.

Heath H, Garrett D, Butler-Cole V, Phair L (2018) Older People in Care Homes: Sex, Sexuality and Intimate Relationships. London: Royal College of Nursing.

Office for National Statistics (2014) Changes in the Older Resident Care Home Population between 2001 and 2011. London: ONS.

16 The Journal of Dementia Care

Gamingforawareness It is vital to make sure that younger generations understand dementia and a new digital dementia awareness game is designed to help. Gary Mitchell and colleagues report on their “gamification” project s the risk of developing dementia increases in an ageing society, there is a pressing need to ensure that younger generations understand what dementia is and how to proactively support people in the community living with dementia (Alzheimer Disease International 2019).

While there are a number of positive initiatives, such as Alzheimer Society’s Dementia Friendly Communities programme, more still are needed if people with dementia are to get the respect and support they require to live active and healthy lives in the community.

In 2019, we received funding from the Dementia Services Development Trust (DSDT) to co-design a free digital dementia awareness game.

Digital gaming or “gamification’” is becoming a common way to educate and train employees in the business sector (Jagoda 2017) and health care professionals have become another target audience (Carter et al 2009, Carter et al 2010, Poultney et al 2016).

For example, Chest Heart & Stroke Scotland developed a digital game which focused on helping professionals understand a stroke patient’s journey (Focus Games 2020).

From our previous research and the work of others, it is evident that a “serious” digital game has the potential to challenge people’s thinking in a creative way.

The aim of this dementia game is to challenge

A

misconceptions about dementia and promote awareness of the condition to a lay audience.

These are, of course, people who can all affect the lives of people with dementia in various ways, shopkeepers, bankers, police and train drivers to name a few. We worked with a project team that included seven people living with dementia, three dementia advocates from local charity Dementia NI and six undergraduate nursing students from Queen’s University Belfast.

The project team met five times during summer 2019 to co-design the game. The first step was to identify the most

n Dr Gary Mitchell is lecturer (education), Dr Gillian Carter is lecturer in chronic illness and Christine Brown Wilson is professor (education), all at Queen’s University Belfast.

January/February 2021 Vol 29 No 1

pertinent misconceptions about dementia and how these could be addressed in the game. This process was supported by findings from previous focus group interviews the researchers had undertaken with people with dementia in the previous spring.

Key themes Two key themes for the game emerged from our discussions: “emphasising capability, not disability” and “normalising dementia” (Mitchell et al, forthcoming). We collaborated with gaming developer Focus Games to co-design the format of the game, such as the digital interface, colours and

animations. The project team wrote all the questions featured in the game, then we got feedback on the prototype from more than 20 people with dementia who had not previously been involved.

The result was the Dementia Awareness Game, an HTML5 web application with a supporting website. It works on any device through a web browser and only takes a few minutes to play. Players answer random questions, drawn from a bank of questions about dementia, and, every time they get the right answer, they make progress in the game. It takes approximately 90 seconds to play and players can have multiple attempts as questions are randomly generated.

Players receive feedback and further information on each question they answer.

We field-tested the game last winter among the public, who were asked to complete the Approaches to Dementia Questionnaire (ADQ) before and after playing the game to determine whether there had been any change in perception of dementia (Lintern & Woods 2001). Over a four-week period, 500 people played the game and completed the questionnaire.

Our findings demonstrated a statistically significant improvement in perceptions of dementia across all the questionnaire domains and suggested that the game created more positive attitudes in those who played it. For example, there were more optimistic perceptions of the

abilities and the future of people with dementia and what might be achieved by them, as well as more recognition that people with dementia are unique individuals with the same value as anyone else (Carter et al, forthcoming).

Since our initial evaluation, the game has been played more than 3,000 times and forms part of the nursing curriculum at this university. We are now exploring opportunities to use gamification in promoting dementia awareness among audiences as diverse as health care professionals and children.

We encourage dementia care professionals to promote the game through their own networks as a way to break the myths, challenge stigma and share knowledge. To play the game visit www.dementiagame.com A short video of the game coproduction process can be viewed at www.youtube.com/ watch?v=UE7bOp6jyyw n References Alzheimer Disease International (2019) Dementia-Friendly Communities: Key Principles.

London: ADI. Carter G, Brown Wilson C, Mitchell G (forthcoming) The effectiveness of a digital game to improve public perception of dementia: a pretest/post-test evaluation. BMC Geriatrics (under review).

Carter (nee Blakely) G, Skirton H, Cooper S, Peter A, Nelms P (2010) Use of educational games in the health professions: A mixed-methods study of educators’ perspectives in the UK. Nursing and Health Sciences 12(1) 27-32.

Carter (nee Blakely) G, Skirton H, Cooper S, Allum P, Nelmes P (2009) Educational gaming in the health sciences: systematic review. Journal of Advanced Nursing 65(2) 259-269.

Focus Games (2020) The Stroke Game: Overview. Glasgow: Focus Games.

Jagoda P (2017) Videogame Criticism and Games in the Twenty-First Century. American Literary History 29(1) 205-218.

Lintern T, Woods B (2001) Approaches to Dementia Questionnaire. Bangor: University of Wales.

Mitchell G, McTurk T, Carter G, Brown Wilson C (forthcoming) Exploring Perceptions of Dementia in Northern Ireland. BMC Geriatrics (under review).

PERSPECTIVES ‘Free to be Me’ – how far are we in achieving this for LGBTQ+ people? n Sally Knocker is a consultant trainer at Meaningful Care Matters

By Sally Knocker

At a promotional open day event for the first Rainbow Memory Café three years ago, which was hosted by Opening Doors London, I invited all the heterosexual people in the audience to “come out” by putting their hands up. It was a moment which made everyone laugh, but there were two serious points to be made as well.

First, I wanted to particularly thank the non-LGBTQ+ people in the audience for coming to the event to demonstrate their commitment and support. Promoting inclusion is everybody’s business and we need allies who are not from minority groups to stand alongside us. And second, not many heterosexual or nontrans people know what it’s like to have to be really guarded about when to come out to others about their identity and personal lives.

For those of us who are trans, gay, lesbian, bisexual or nonbinary, we face many decisions throughout our lives about how truly safe we feel to be ourselves. This could be in a range of circumstances from seeing a doctor, booking a hotel room, or when meeting a new person at a party. We have to consider whether that person is likely to be prejudiced or accepting. I’ve become bolder as I’ve got older and more comfortable in my own skin, but there’s still a decision to be made.

When someone has a dementia, there’s likely to be an additional sense of vulnerability. At a time when memory and cognition is failing, it’s especially important to feel “free to be me”. Chris Maddocks, who lives with Lewy body dementia, noted: “It’s a double stigma really, having dementia and being gay. When I mention my partner, people usually assume it’s a man. When I say it’s a woman, there’s often a very awkward pause or an ‘Oh.’ Why don’t they just say something ordinary like ‘How long have you been together?’”

I’ve visited many care homes over my 30-year career, and I’m always surprised by how few LGBTQ+ people are known about.

As I said in a Tweet: “As we go grey, do we somehow become less gay?”.

Some managers have told me that because they’re welcoming of everyone, there’s no real need to know about someone’s gender identity or sexuality. This misses the point, as these aspects of our identity are core to our wellbeing. It is vital that those of us who are trainers in dementia care weave in discussions about the needs of those who are from minority communities.

This is not about being politically correct; it’s about redressing the balance of a society that has over the years treated people who are gay as criminal, sick or evil. We’ve come a long way in recent decades, but prejudice and hatred are still out there. We have much still to do to ensure we all feel genuinely safe, free to be who we are, and love who we want to.

Vol 29 No 1 January/February 2021 TThe Journal of Dementia Care 17

Getting Creative: a project to improve well-being for all Patients in a Newcastle memory service, along with their caregivers and clinicians, were given the chance of “Getting Creative” thanks to a project run by the charity Equal Arts.

Kate Parkin explains how it worked e know that creative activity can enhance wellbeing and enable better communication between people with dementia, their care-givers and clinicians. But incorporating it into a busy NHS setting is often easier said than done.

As a creative ageing charity based in the north-east of England, Equal Arts has spent more than 30 years bringing creative opportunities to older people to help reduce loneliness and improve wellbeing. So, when we were approached by Dr Charlotte Allan, consultant psychiatrist with the Newcastle Memory Assessment and Management Service (MAMS), we were keen to see if there was a way we could work together on a project.

We came up with an innovative partnership to introduce arts-based activities into the service’s clinical pathway, funded by a Health Foundation Innovation for Improvement grant for which MAMS had successfully applied. A challenge we faced was that while creative activities have been shown to improve wellbeing and reduce stress in people with dementia and in their caregivers, they are not commissioned as a core part of NHS memory services.

Clinic staff have pressurised schedules leaving few opportunities for working creatively or focussing on their own wellbeing. During initial benchmarking surveys, they felt strongly that an outcome

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n Kate Parkin is creative age programme manager with Equal Arts https://equalarts.org.uk

18 The Journal of Dementia Care

Project outcomes • Increased post-diagnostic support for patients living with dementia, and their family caregivers • Prioritisation of staff wellbeing at work • Strengthened relationships between colleagues, leading to better patient care of the project should be to strengthen communication and build empathy between themselves and their patients.

Our charity operates in care settings and cultural venues to support professional artists to deliver creative workshops for residents and people with dementia with a view to promoting communication and wellbeing.

We developed a series of three “Getting Creative” groups for patients and caregivers at MAMS, each group running for eight weeks and being co-led by professional artists and clinical staff, who collaborated to introduce activities themed around creative language, cyanotype print-making, working with clay and glasswork.

Artist-led groups Groups each comprised 12 people with dementia and their caregivers, two staff providing pastoral support, one creative writer who facilitated every session, and an artist. Different activities required different artists, depending on whether it was glasswork or ceramics or another art-form.

MAMS promoted the groups, which met once a week, with flyers and a

• New opportunities for staff training, personal development and leadership. personalised letter from the occupational therapist after they had received their diagnosis and first appointment at the clinic. Each eight-week series of workshops was followed by a four-week gap and then another eight-week series with a new set of participants. We wanted to give as many as possible of the 600 memory service attendees the chance to take part.

Workshops ran for two hours and included time at the beginning to reflect on the previous session and time at the end to reflect on what had just been said using creative writing methods. A tea break also gave participants an opportunity to talk.

A time for growth and renewal Our intervention developed a new paradigm for patients and caregivers, one which foregrounded the idea that living with dementia can be a positive experience and a time for growth and renewal.

Participants were proud of their creations, which

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increased their sense of wellbeing and confidence.

They looked more relaxed, smiled and formed connections with their peers.

Memory clinic staff were also offered six creative sessions of their own with activities that mirrored those in the patient groups. Those staff who assisted in the patient workshops were able to find out in advance about the kinds of artistic techniques that would be employed in them. This helped with their resilience and wellbeing.

One staff session brought doctors, nurses, occupational therapists and administrators together to create poetry and glasswork that expressed their gratitude for working with each other and for being part of the lives of their patients.

Ownership from senior NHS managers resulted in more buy-in from staff, supported meaningful partnership working and provided a commitment to

legacy. Once memory groups can reconvene and return to the building there are plans to support the continuation of creative activities within these groups. Presently patients have been offered Equal Arts Create at Home creative activity packs and access to online workshops.

Evaluation The clinic purchased iPads so that photographic evidence and survey responses could be gathered from workshops.

Simple surveys were created on the iPads and passed around during sessions. We wanted to find out how participants were feeling “in the moment” rather than retrospectively and responding could be as easy as choosing from a range of facial expressions from happy to sad.

A videographer also interviewed participants in each workshop series and the creative writer provided observational feedback after every session which fed into the final report. Staff completed their own evaluation using the Warwick-Edinburgh Mental Wellbeing Scales (WEMWBS) among other methods.

The findings were

overwhelmingly positive. It was pleasing to see patients, who had been nervous at first, find their voices and the ability to communicate with each other and make new friends through creative activities, such as moulding clay figures and making green glass bottle lamps.

Typical comments in their feedback were “I felt relaxed, involved and happy” and “It was a pivotal moment in his dementia journey and helped him accept his diagnosis and realise there is life after diagnosis.”

Staff sessions had a similar impact. They bolstered wellbeing by evoking a sense of autonomy, belonging and competence, and they encouraged joy at work. Staff

Creative work in progress, and some stunning results from the Equal Arts project with Newcastle Memory Service

had fun and described feelings of optimism and hope.

Relationships between colleagues were strengthened in the workshops, which also allowed reflection on better communication and engagement with patients.

Many members of staff continued their learning through follow-up creative activity either in their own time or in ongoing memory group sessions with patients. As a whole the evaluation makes a strong case to explore alternative social prescribing options for patients and caregivers.

The project has had a longterm influence on the way the clinic runs its service and our hope is that it can be extended

to other services in the North East. There has already been interest from other hospital wards and clinics working with older adults and mental health.

Following the project, we’ve been liaising with NHS staff and patient experience coordinators to explore replicating and scaling up the model in other hospitals. We are determined to capture the tremendous energy fostered by the project to embed creative activities in post-diagnostic pathways right across the region.

Further information See this three-minute video for further details about the project: https:// vimeo.com/383579168 n

Vol 29 No 1 January/February 2021 The Journal of Dementia Care 19

ime and Place is a project aimed at helping people with dementia write their own poetry, assisted by student volunteers. Our plans for a face-to-face weekly group for people in east Kent were derailed by the pandemic, but we transformed it into a remotely connected innovative national project.

It all started in 2017 when the three project leaders writing this article first met. Jess volunteered for Dreams and Visions, an earlier project created by Keith and Liz in which people with dementia were enabled to write short film scripts. Now we were turning our attention to poetry.

Jess was studying at the University of Kent and when she saw an advert for community scholarship grants for projects designed by students, she contacted Keith and Liz to discuss new ideas.

The three of us decided it would be exciting to draw inspiration from Jess’s degree subjects of archaeology and English literature, exploring the history of Canterbury and people’s experience of the place through their own life stories. We decided to tell these stories in poetry.

Our decision was based partly on John Killick’s success with poetry as a vehicle for the experiences of people with dementia. As poems are often shorter than a piece of prose on the same subject would be, their narrative is easier to follow for people with dementia. Poetry can also be emotive, so is an ideal medium for people to express their thoughts and feelings.

The difference with our project would be that, whereas Killick writes poems inspired by people with dementia, the people with dementia themselves would write the

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n Liz Jennings is a writer and creative group teacher, Jess Shaw is a postgraduate student in experimental archaeology at the University of Exeter, and Keith Oliver is Alzheimer’s Society ambassador and KMPT NHS dementia envoy. They jointly led the Time and Place project

20 The Journal of Dementia Care

‘It’s changed my life just by giving it a try’ When Covid-19 struck, the Time and Place poetry project seemed doomed.

Liz Jennings, Jess Shaw and Keith Oliver describe how it was rescued, drawing together creative writers from across the UK to become a national success story

poetry. Jess embraced the idea enthusiastically, and so the original concept of Time and Place was born.

When we started, we thought we would need a venue for our meetings and we spent a long time trying to find somewhere. Finally, we were offered a free room in Canterbury city library, where we had hoped to encourage engagement between our participants and the library as well as taking advantage of its central location in the historic city. It all seemed very fitting.

Plans turned upside down Liz had just begun to design the course content when Covid-19 struck and lockdown turned our plans upside down. Suddenly participants were stuck indoors. How could we now run a group based on physical landmarks if we weren’t able to go to them?

The project could so easily have died at this stage, but we

January/February 2021 Vol 29 No 1

were saved by the strong team we had by now established and whose shared commitment and vision made us determined to proceed. As a result, we began to investigate online possibilities, and at this point Keith invited Steve Milton of Innovations in Dementia to join us in thinking this through.

Jess had already won the £1,000 student scholarship plus a grant of £900 for our project.

She had recruited a team of enthusiastic student volunteers to help out, while Liz was the creative star who came up with the ideas and Keith was well placed with his dementia network, providing contacts for potential participants and insight into some of the needs of participants.

Liz and Jess had also previously visited the Kent Forget Me Nots in Canterbury and the SUNshiners in Dover, both groups of people with dementia, to speak about the themes they hoped to explore.

The visits were very successful

since people with dementia were keen and we received confirmed interest from 10 people across the two groups.

Despite the move online, we still hoped to stick to our original plan of linking poetry and place. Liz travelled to landmarks we had identified and took photographs to see if they could be used to prompt ideas and memories of time spent in those places. However, she quickly realised that it would be very hard for writers to respond to a smell, sound, or the atmosphere of a place if they weren’t able to be in it.

Instead, we decided that the “place” that would inspire our poems would be people’s own homes. The team investigated whether people would be inspired if prompts were placed on a Facebook thread, but quickly realised that items moved about in a way that could be confusing for participants.

Liz began to explore the possibility of posting a poetry

session as a blog on her website instead, learning how to make short videos on her laptop, upload them to YouTube and then post them on to her blog with examples of the types of poems she thought we could write. This meant that sessions would be viewed in a fixed order, and that all participants’ poems could be posted as comments at the bottom of each blog post, with no need for a Facebook account.

The team, which had now grown to four, met weekly on Zoom to evaluate progress and plan the next stages. The path to creating the resources now seemed clear, but the 22 student volunteers Jess had assembled were another matter. Many had gone home for lockdown and a lot of them had understandably lost motivation. Volunteering online can also seem more intimidating – somehow calling people on Zoom and glimpsing their homes is far more intimate than meeting in a library.

Fortunately, five students retained their interest and willingness to be involved as volunteers.

The challenge of recruiting participants also changed.

People were in a very different situation from when they had signed up. Keith began to speak about the project at the dementia-related meetings he attended online, not just revisiting via video calls the Forget me nots and the SUNshiners but going further afield to the Three Nations Dementia Working Group steering group and a DEEP group based in Fife.

A leap of faith It was hard to convey remotely the benefits of being involved in our project and it was a leap of faith for those interested in pursuing it. But we soon found we had grown from a small group of fairly local people in east Kent to a national group with writers from Scotland and Wales keen to join us. As participants began posting their poems on the blog, we were delighted at how things were working.

Some participants had a

Poems by members of the Time and Place project Tracey’s sensory poem Silence reigns in my house, yet I can hear the faint noise of the cars going past, The wind blowing and the birds’ song, As I sit here, I can smell the fragrance of the oranges Which are sitting in the fruit bowl, I sip my coffee, having that first taste of goodness in the morning Followed by a glass of clear, cold water.

Rosa jumps onto my lap for her morning cuddle, Her fur feels soft against my hands.

I feel pleased that my peace lily has flowered To see the beautiful white flower, against the green leaves.

Haiku ‘Friendship matters’, by Keith Friends pass through our lives Filling our hearts with love Stays with us forever xxx

mental block, believing they weren’t poets and therefore couldn’t write poetry. To try to overcome these difficulties, we asked two or three people with dementia to trial some of our ideas and give us feedback before opening up to the full group of participants, which by this point had reached 14 people with dementia. Liz planned and devised the poetry activities embracing a wide range of stimulating poetry forms.

In week one, the “place” was the individual’s kitchen, and writers were encouraged through three warmly delivered short videos to write a tanka poem and a descriptive poem, about an item they had in their kitchen. Liz’s videos were instructive, well-paced, and always delivered with a kind smile. Alongside this, she provided written instructions and her own written example to encourage and stimulate ideas.

Over the next four weeks, Liz took us on a tour through our own homes, using different poetic forms to express feelings and emotions within each room.

At first, participants were encouraged to ask for support should they need it. Since no one did ask for help, the team decided to assign volunteers to

Acrostic Poem, by Gail Good at crafting Authentic and real Imaginative so creative Loves the simple things in life Gardening Relaxing Enclosed in a safe place Green trees, perfumed flowers Ocean is my love Rolling of the waves Yellow sandy beaches.

Max, by Melvyn White horses rush from out at sea What a sight what I see A big strong faithful heart I see I see him run from the sea With leathers rapping in the breeze His coat shining in the sun is like it is when he was young So useful, so serene, so dominant you see He is so powerful of the muscle Yet so gentle Also my friend, my carer, my confidante.

participants to check in weekly and offer support with a variety of things: answering any questions prompted by the videos, assisting with technology by posting poems on the blog, and providing general encouragement. It built a greater sense of community and gave more confidence to participants and volunteers.

Opening minds When we held a Zoom meeting for everybody halfway through the project, we were delighted by the feedback. We had comments such as “I’ve never tried poetry before, but I’ve discovered I love it!” and “My words and speech have noticeably improved since I started this group, my husband has noticed the difference.” We were deeply encouraged when one participant summed up all our hopes for the project by saying, “It has changed my life just by giving it a try. It has opened my mind to all the possibilities of what I can do when I just try something.”

At the same meeting participants and volunteers read out a favourite poem written for the project. While

we had always said that the quality of the writing was by far secondary to the enjoyment, the contributions have been outstanding and dispel the myth that people with dementia cannot write. Some participants took pleasure in reading others’ poems as they could relate to the experiences, while many said the project gave them a sense of normality during the upheaval of lockdown. “The project has been a lifeline to me during the challenges of the corona-coaster lockdown,” one said, and another called it “the best thing I have done in lockdown”.

Everybody was sad when Time and Place ended and we are considering how we can harness what has been achieved to take it further when the pandemic is over. The resources created by Liz are available to view – email keith_oliver88@hotmail.com for details – and we hope to publish an anthology of the poems as a memento and record of our accomplishments.

As one participant said: “When so many folk give up on you, and you give up on yourself… to be given this chance it’s beyond amazing and I love it.” n

Vol 29 No 1 January/February 2021 The Journal of Dementia Care 21

Playfulness and mischief – an intergenerational journey Jo James is consultant nurse for dementia and delirium, Imperial College Healthcare NHS Trust, Dr Nicola Abraham is lecturer, Applied Theatre, Royal Central School of Speech and Drama, and Dr Elizabeth McGeorge is a junior doctor who was intergenerational fellow.

An intergenerational Christmas party held on an acute hospital ward sparked off plans for a whole new project. But would it be possible to overcome staff resistance? Jo James, Nicola Abraham and Elizabeth McGeorge describe what happened next

Photographs by Akiko Du Pont (akiko-dupont.com) and Jo James.

hen we first had the idea of holding an intergenerational Christmas party on an acute ward with patients who had dementia, we soon ran into organisational problems. Initially, our idea was simple: our hospital dementia team would provide the patients, the paediatric team would provide the children, and the Royal Central School of Speech and Drama, our partners, would provide the expertise in facilitating multi-generational events.

But we quickly discovered that we could not match the paediatric inpatients with the adults on our ward as there were too many variables and the children’s hospital length of stay was too short.

Instead we turned to a school, chosen because one of the teachers there was related to one of our doctors.

Held three years ago, our Christmas party was a great success and marked the start of a unique collaboration between local schools, the hospital and the drama school. We were spurred on not just by our own success but by experience elsewhere.

We had heard about intergenerational events in care home settings with evidence suggesting that they are mutually beneficial to residents and children, fostering empathy and respect and challenging stereotypes (Hutchinson & Webb 1988). And we had also heard of the outstanding programme at Nightingale Hammerson, which placed a nursery in their London care home. We were convinced that it would work in a hospital,

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22 The Journal of Dementia Care

January/February 2021 Vol 29 No 1

but we were beset with doubts and anxieties about how to make it happen.

We knew what we did not want: a line of embarrassed children singing a song in front of a line of equally embarrassed adults. We wanted fun, mischief and joint endeavours, something that would make us all laugh and something that would alleviate the crushing boredom and isolation of a hospital admission for a person living with dementia.

Protective responses Despite the evidence in favour of our plans, the reactions of our colleagues made us doubt ourselves. One of the early responses from a member of the paediatric staff was “I wouldn’t let my children go to something like that.” It turned out that this view was based on a concern about exposing her children to the unpredictable behaviour of the patients, mirrored by a member of the dementia team who was worried about exposing her patients to the unpredictable behaviour of the children!

This protectiveness persisted on both sides throughout the project, but we challenged it and rightly so. After more than 60 events involving over 180 patients and 130 children, we can confirm that, if there was any unpredictable behaviour, it was greeted with amusement and tolerance and never upset anyone. If anything, it created more joy.

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Following our intergenerational Christmas party, we secured a two-year grant from the Imperial Health Charity for the new post of “intergenerational fellow”. We had two fellows in succession, both doctors – Charlotte Lance and Elizabeth McGeorge (co-author) – whose role was to be a project manager and ensure that the programme was delivered safely for patients and children .

Other doctors from Connecting Care for Children, our NHS trust’s scheme for integrating paediatric care across north-west London, joined us for specific events and gained unique insights from being part of them. As one of them said:

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I mean, it was just amazing… it was very rewarding ! ! ! ! ! to care for people without being clinical, to help them !! enjoy their quality of life. Maybe one day it could be ! of hours ! with ! patients ! ! part of our jobs to spend a couple ! and watch them enjoy doing something.

Setting up Setting up a project rather than a single event brought additional complexities. Local schools had to be approached, four of which agreed to take part by involving children across the 7-11 years age range. Wards with space suitable to host larger groups including young children had to be identified. And, finally, there was our infection control department, who were remarkably open and supportive, and developed a system to keep both sides safe (see diagram above).

Everyone had to agree to the infection control system and accept that an event could be cancelled at short notice if any of the criteria were not met.

The system worked well as it kept our events safe, although it did mean that there were occasions when we had to rearrange venues or even call off an event altogether.

The schools wanted to embed the hospital events into their curriculum, which meant that we had to find enough activities to cover multiple sessions every term. We wanted to provide variety and stimulation for both the adults and children.

We tried a range of activities with different facilitators from the Royal Central School of Speech and Drama and elsewhere, who were all instructed to make the workshops about coproduction and partnership working. Activities ranged from drama, dancing and poetry workshops, arts and crafts, team challenges, gardening and museum outreach to a farm visit and puppet-making.

Over the two-year grant period we worked with 12 different facilitators and learned what did and did not work together. The project became a journey for the facilitators too as they learned how to navigate the complex interplay between the environment, patients, staff and children.

Some facilitators started with a set plan and tried to adhere to it, but as time went on most realised that things rarely turned out the way they expected. One told us that delivering sessions was about “having a jumping off point and not knowing where you are going to land and being fine with that,” while another said “you can learn from every session and always be improving, but ! ! ! ! ! ! just leave your ego at the door and just let people ! ! ! ! respond in the way they want to respond.” ! if !

We discovered that patients felt uncomfortable ! they were too exposed in an activity or were asked ! ! ! ! too many questions.

Sometimes, they simply ! ! ! watching. We also found enjoyed being there and ! that, particularly on hot days, the children preferred quiet, contemplative activities.

Whatever the activity, both adults and children loved creating things and being able to take away the fruits of their creativity. As one of our physiotherapists put it:

Above: the infection control process Left: A collage-making session

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It’s a really nice talking point, I’ve seen people talk to their families about [artefacts from the workshops] or we can use them in therapy sessions to say “what did you do?” and it engages them.

One of the challenges of the project was persuading patients to come. Sessions had to be held in the early afternoon and patients who had agreed to take part in the morning might be too tired or sleepy when the time came. Sometimes, most of the patients were too unwell to come. If numbers were too low, staff or helpers would join in more with the activities.

We came to take the variation in numbers in our stride. It is what happens in an acute setting and as one consultant geriatrician said, we needed to “stop worrying about numbers and think about the impact it is having on the people who are there.”

It is a given that children are playful and that many will also be mischievous. However, playfulness and mischief in an older adult, particularly one living with dementia, is often distrusted or misinterpreted as due to cognitive impairment. In fact, playfulness in older adults is associated with better health (Yarnal & Mitas ‰

References Hutchinson S, Webb RR (1988) Intergenerational geriatric remotivation: Elders’ perspectives.

Journal of Cross‐Cultural Gerontology 3 273–297.

Yarnal C, Qian X (2011) Older-Adult Playfulness: an Innovative Construct and Measurement for Healthy Aging Research.

American Journal of Play 4(1) 52-79.

Yarnal C, Mitas O (2008) Playfulness & Healthy Aging: Playing with Theoretical Connections.

Paper presented at Association for the Study of Play, Tempe, Arizona.

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The project promoted empathy in the children. After they had been coming for a term, some would take responsibility for helping patients who needed support without being prompted

‰ 2008) and impishness, clowning and teasing are core components of this playfulness (Yarnal & Qian 2011). The more extreme the behaviour, we found, the greater the connection between adult and child.

A teacher from one of our partner schools saw it this way: There was a wonderful elderly lady telling about some romantic tryst on the Serpentine that was hysterical… We are always, particularly as teachers but also adults in general, we are very careful around kids and very appropriate and very whatever, and it’s wonderful because the older people have none of that.

And it’s nice, it’s more natural, like it’s a sort of in a way more the way it should be, so it’s more direct. I think it was nice because it surprised the kids and helped them let down some of their barriers.

Patients let down their barriers too. Children who had been described as “challenging” formed some of the closest and most meaningful friendships with the patients. The patients also responded more positively to children who did not follow instructions or became very excited.

One patient told us that he “loved the energy”.

Research and evidence As is often the case in health care, our grant was awarded on the basis we would provide evidence that the intervention was effective in the hospital setting. To meet this requirement, we wanted to research the impact of our intergenerational project on patients, children and staff, focussing on mood and levels of enjoyment for the patients and attitude, enjoyment and learning for the children.

But when we applied for NHS ethical approval,

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what had at first been a small part of a largely practical project soon became the biggest and most complicated logistical challenge that we were to face. The application process is highly rigorous because weighted towards medical research, but it was hard to apply that rigour to what we wanted to do, namely to ask patients if they had had a good time. Eventually, we had to abandon the idea of asking our patients anything.

Instead, we concentrated on the children, facilitators and staff, which gave us some excellent insights. We had fallen into a trap of believing that we needed a medical-style evidence base to justify something that was really about fun and joy. This is common in health care but will have to change if there is to be more emphasis on social prescribing and interventions to promote wellbeing in future.

Project outcomes Although we had to exclude patients from our formal evaluation, we were able to collect informal feedback from them. A female patient wrote: “Thank you for making my pain disappear for the afternoon” and another stated “I can’t think of anything more uplifting than seeing children.”

One of the ways in which we were able to measure impact was through our photographs of the events. We were lucky to be supported by Akiko Du Pont, a documentary photographer who chronicled our journey, and this extraordinary record witnesses to the joy the project brought to all those who participated. Every photograph was copied and given to the patients and schools as an “album” of cherished memories.

We wanted the project to be as inclusive as possible, so we tried to engage ward staff, therapists, doctors and patients’ families. A facilitator noted:

What’s been really lovely is having the staff take part as well, having continuity of staff and nurses we recognise. [Nurses] that knew the patients and also would join in… So they weren’t just sat watching or just in their role but they were actually participants as well and I think that put everyone at the same level and made it a really, truly intergenerational experience.

Ward staff were reluctant at first, but eventually started dropping in to spend a little time in the sessions and began to look forward to them. The matron commented: When the kids are here it has a positive impact on the ward. We look forward to Wednesdays because we know on a Wednesday the children are coming and patients are excited about it, it is something to look forward to.

Our research with 75 of the children was facilitated through informal drama-based focus groups, which canvassed ideas before and after the children had been through the programme.

The changes in attitude and approach were dramatic. When asked after the project, one child said, “I learned how to take care of older people and what they like to do… I always ask what they’d like to play or how they are feeling or what they want to make.” Another said that one should always “speak kindly and clearly.”

A teacher observed that the project promoted empathy in the children. After they had been coming for a term, some of them would take responsibility for helping patients who needed support without being prompted. For example, when we were visited by a farm, two children put down the animals they were holding to help a patient who had just arrived. “Quick, get Theo an animal!” one of them called out to the facilitator.

Parents observed changes in their children too.

They were given questionnaires, in which we received comments such as the following from three separate parents: My daughter always looked forward to hospital

visits, she seemed to have learned more about people with dementia, being compassionate and helping others.

My child enjoyed participating and was always excited when visiting. Furthermore, he has developed his speaking and communicating skills.

[My child] is more aware of needs of elderly, she is able to relate better especially as my grandmother has dementia. She has thoroughly enjoyed this experience and I love that she was able to take part.

Conclusion In the two years of this project, we have learned an enormous amount.

It has convinced us that this approach has value not just to the children and the patients but to everyone involved. It was more complicated than expected; we had to learn to be flexible (not a natural position for hospitals or schools) and change what we were doing at the last minute if necessary.

All of us had our preconceived notions about people with dementia and children challenged at different points. We did not expect to find ourselves part of a diverse and caring community made up of patients, artists, performers, doctors, nurses and children, but that is what happened and that is what made the programme “fantastico” as one participant expressed it.

In March, we had to stop the programme abruptly because of the pandemic and we are currently faced with finding a new way to deliver it in the hospital. We believe it is needed now more than ever. Hospital stays have become more frightening and patients more disconnected and isolated.

So we are continuing to connect our patients and children in schools, but we are doing so remotely, using teachers as facilitators in schools and staff as facilitators in hospital. Life stories, storytelling and digital letters are the creative basis of this joint endeavour by patients and children. It is not quite the same as meeting face-to-face, but it continues to be well worth doing. Less mischief, perhaps, but still plenty of fun. n

Making puppets and mini-gardens, given to the patients after the session

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Rare dementia support in rural and remote areas The Rare Dementia Impact Project team is providing insights into the support needs and care preferences of people with rarer forms of dementia. Gill Windle and colleagues studied the benefits and challenges for those in rural and remote regions. are dementias tend to affect individuals of working age, creating problems in relation to employment, income, retirement planning and family life (Svanberg et al 2011, Allen et al 2009). In the first article of this series, our colleagues at the Rare Dementia Impact project described the importance of support for people affected by rarer dementias such as frontotemporal dementia and posterior cortical atrophy (Brotherhood et al 2020).

They noted the considerable difficulties many face in obtaining help from services, whereas we will consider how this may particularly manifest for those affected by a dementia who live in rural or remote areas. We draw on examples from international research, but also situate this in two rural contexts where the RDS Impact Project is being conducted (Wales and Canada).

The environment of the places we live in may support or exacerbate the experience of dementia, and rurality is intimately linked to remoteness.

Compared to a population density of 406.8 people per square kilometre in England, density is much lower in Wales (144.7), north-eastern Ontario (1.8) and northern Ontario (0.97).

To take the example of Wales, 63% of the population live in rural areas (ONS 2013). At the same time, estimates suggest that the increase in the number of people living with dementia there, between 2011 and 2021, will be higher for rural areas (44%) than for the rest of Wales (31%) (Welsh Government 2011).

R

Policy - and challenges National dementia strategies put an emphasis on those facing inequalities in care, including those who live in rural and remote places. The dementia strategy for Canada recognises the challenges faced by people in these locations as well as those providing services and support, and the need for solutions and interventions to be specific to their unique needs (Public Health

26 The Journal of Dementia Care

Agency of Canada 2019). Similarly, the Dementia Action Plan for Wales (Welsh Government 2018) acknowledges that these localities should be a core area of consideration across the dementia care pathway.

But there are challenges to policy implementation in rural areas. Their lower population density and the geography pose additional barriers and costs relating to service and support provision, travel costs and time, and discrepancies in resource allocation (Palmer et al 2019, Szymczynska et al 2011). This may leave people affected by a dementia at a significant disadvantage compared to their urban counterparts, leading to a heavy reliance on unpaid sources of support from family and friends. It is notable that 40% of the $818 billion estimate of the international economic impact of dementia is attributable to family caregiving (Wimo et al 2017).

Specific issues were examined by Innes and colleagues (2011), who reviewed international published scientific literature on dementia care and service provision in rural and remote settings in relation to informal and family caregiving. Looking at 26 papers, they found the majority focused on the experience and use of – and barriers to – formal service provision (15 papers) while the attention given to education and support needs of carers (six papers) and personal experiences of carers (five papers) was more limited.

The authors call for more research on the effects of rural settings on caregiving and the education and support needs of family carers. They conclude: Rural areas globally have aging populations that will require adaptable solutions to their local context. However, to date there is insufficient information available to develop rural dementia care services that support the person with dementia and their family caregivers (p45).

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Gill Windle is professor of ageing and dementia research and Jennifer Roberts is post-doctoral researcher both at Bangor University, Wales. Mary Pat Sullivan is professor of social work and social gerontology at Nipissing University, Canada. For more details email g.windle@bangor.ac.uk A decade on from that literature review, part of our own work programme is examining the international published research to establish if any further knowledge of informal carergivers’ experiences has emerged since (Roberts et al, forthcoming). As no review of published research has focussed on the individual perspective of the person with dementia in rural settings, nor the potential benefits of living in one, our work also explores these aspects.

Review and findings We undertook a systematic scoping review of peer-reviewed journal articles on primary research (e.g. not commentaries or opinion pieces). After sifting through 1,831 summaries of research papers, we focussed our synthesis on the work of 49 studies that were relevant to the research question.

Here we present a short overview of the main findings.

Two themes from our findings suggest possible benefits of living in a rural community (see diagram opposite): “The person living with dementia continuing to contribute”, reflecting the opportunities for ongoing activity and learning, and “Support from the wider community”, reflecting the potential cohesion within and across rural communities.

Detrimental aspects of rural living are particularly prominent in relation to difficulties with dementia care services, which included four sub-themes:

• Complex care systems, which reflect a lack of awareness of any available services, difficulties obtaining a diagnosis and challenges providing long-term care and alternative housing options • Lack of provision affecting continuity of care, which reflects poor service provision • Transport and travelling, which reflects the difficulties faced in getting to any service centres and receiving daily home care • Language and cultural sensitivity, which reflects the challenges faced by indigenous or minority language groups in securing appropriate services.

Among other detrimental effects were risk of isolation, impact of stigma and caregiver distress. All of these are likely to be problematic in urban areas but are exacerbated by problems with dementia care services. Inevitably, people have to cope and manage despite these problems, so support from family and friends is often crucial. Some of the studies suggested that religion is a frequently used coping mechanism for rural caregivers, while others noted how some carers, despite being distressed and feeling overwhelmed, also managed to find positive aspects of their role. There were, in other words, signs of resilience.

On the whole our findings indicate that support is hard to obtain, with people having to draw on their own personal sources of strength. How might this manifest for those living with rarer forms of dementia? Many of the research papers included in our work (full list available

The Caban Group of Bangor University Dementia Educators (people living with dementia)

from the authors) did not provide details about the type of dementia. Where reported, only four studies appeared to include people living with a rarer form (frontotemporal dementia).

Similarly, there appears to be a gap in the research literature regarding the experiences of people with dementia considered on their own. Only two studies in our review studied people with dementia without also studying carers or other individuals. A tentative conclusion is that there is a lack of knowledge about the experience of dementia in rural areas, especially how it may affect those living with rarer forms of the condition.

New insights needed As part of our research, the Rare Dementia Impact Project team aims to provide some new insights into the support needs and care preferences of people with rarer forms of dementia. In Canada and Wales, we are working to establish regional groups of rare dementia support, finding people who are currently “hidden” from the mainstream and who could benefit from the Rare Dementia Support network

highlighted in the first article of this series (Brotherhood et al 2020).

Our review identified opportunities for people with dementia to contribute to the life of rural communities. Maintaining a social life, continuing long-term friendships and activities and connecting people affected by dementia in peer-to-peer groups are examples. At Bangor University, in Wales, we support “The Caban”, a group of people primarily with young onset dementia and their carers who regularly work with researchers and students.

The Caban contribute to research, such as the Rare Dementia Impact Project, and undergraduate and postgraduate study about what is important to people affected by dementia. Inspired by discussions on the topic of resilience, they developed videos sharing their “top tips” following a dementia diagnosis. As one member noted: I joined a group and I felt useful again. I wasn’t waiting to die. I feel good about it because I am doing something. I feel empowered.

At Nipissing University, in northern Ontario, we are documenting what ‰

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‰ support groups, if any, people with a rare dementia or their care partner are accessing. We aim to see how best to connect people with a rare dementia living in large and culturally diverse geographical areas. If we can build on existing or new support opportunities to address their needs, that will be a real achievement.

For the Rare Dementia Support network, go to www.raredementiasupport.org Acknowledgements Our research was funded by the Economic and Social Research Council, Grant/Award Number: ES/S010467/1, National Institute for Health Research, Nipissing University, Bangor University, and University College London. We are indebted to the current and former members of Rare Dementia Support, without whom this study would not have been possible. n References Allen J, Oyebode JR, Allen J (2009) Having a father with young onset dementia: the impact on wellbeing of young people. Dementia 8(4) 455-480.

Brotherhood E, Walton J, Crutch S (2020) Why Do We Need Rare Dementia Support? Journal of Dementia Care 28 (6) 20-23.

Innes A, Morgan D, Kostineuk J (2011) Dementia care in rural and remote settings: a systematic review of informal/family caregiving. Maturitas 68(1) 34-46.

Office for National Statistics (2013) Urban and Rural Area Definitions for Policy Purposes in England and Wales: methodology, v1.0, Newport: ONS /Welsh Government / Department for Environment, Food & Rural Affairs / Department for Communities & Local Government. London: ONS. Palmer B, Appleby J, Spencer J (2019) Rural health care: A rapid review of the impact of rurality on the costs of delivering health care.

London: Nuffield Trust.

Public Health Agency of Canada (2019) A Dementia Strategy for Canada: Together We Aspire. Ottawa: Government of Canada.

Roberts JR, Windle G, Brotherhood EV, Camic PM et al (forthcoming) Dementia in rural settings: A scoping review exploring the personal experiences of people with dementia and their caregivers.

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.

Szymczynska P, Innes A, Mason A, Stark C (2011) A review of diagnostic process and postdiagnostic support for people with dementia in rural areas. Journal of Primary Care & Community Health 2(4) 262-276.

Welsh Government (2011) National Dementia Vision for Wales: dementia supportive communities. Wales: Welsh Assembly Government/Alzheimer’s Society.

Welsh Government (2018). Dementia Action Plan for Wales 2018-2022. Cardiff: Welsh Government.

Wimo A, Guerchet M, Ali GC, Wu Y et al (2017).

The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimer's & Dementia 13(1) 1-7.

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Livingwithcancer and dementia: care and treatment experiences How can the needs of people who have both dementia and cancer be met effectively? Alys Griffiths and colleagues discuss their research findings, which cast light on the specific challenges of decision-making, navigating the system and offering person-centred care any people with dementia also have other long-term conditions, known as comorbidity or multimorbidity, and in some cases one of these other conditions is cancer. Statistics show that over a third of new cancer cases are in people aged 75 or over (Cancer Research UK 2020), the age group most vulnerable to dementia.

Until recently, however, little has been known about how many people are living with both cancer and dementia. A recent review of research studies found figures for people with both conditions that ranged from 0.2% to 45.6% of their respective samples (McWilliams et al 2018).

Reasons for this wide range are that studies used different health care records to identify diagnoses, some only looked at a single type of cancer, and some examined a single timepoint while others looked over a period of time. Very little research has also looked at the experiences and outcomes of people with cancer and dementia.

Despite the limited research, it does show that people with dementia (compared to those without): • are more likely to be diagnosed with cancer at a later stage, during an emergency visit to hospital, by chance or even after death • are less likely to receive treatment in line with guidance, and more likely to experience complications during treatment and hospitalisations • have poorer survival rates (Hopkinson et al 2016; Renzi et al 2019).

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Alys Griffiths is a senior research fellow and Claire Surr is professor of dementia studies at Leeds Beckett University.

June Hennell and Margaret Ogden are experts by experience working with the research team In our study, named CanDem, we aimed to understand the size and characteristics of the population of people with cancer and dementia in England, and to explore the experiences of a group of people receiving cancer care and treatment while living with dementia.

Population profile Our first study looked at ResearchOne data, which takes anonymised data from GP records for research purposes. We studied data from 391 GP practices (approximately 5% of practices in England) for everyone aged 50 or over who had a cancer and/or dementia diagnosis between 2005 and 2016. We compared people who had cancer and dementia with those who only had cancer or only had dementia.

We found there were 116,388 people with cancer and 49,599 people with dementia. Of these, 3,616 had both conditions. We calculated that 18 people in every 100,000 aged 50 or over living in England have dementia and cancer.

When we considered people aged 75plus we found that 1 in 13 people who had a cancer diagnosis also had

Care and treatment

Two lay perspectives June Hennell “Where are we going darling?” asked my husband. “To the hospital’’ I replied. “Oh, for you or me?” he asked. This question was despite lengthy discussion the previous evening and a reminder that morning of the need for us to leave the house early.

My husband had difficulty getting up early, so persuasion and repetition, skills which every carer develops, were fundamental to arriving on time to appointments. The discussion followed a letter asking us to go for 35 consecutive days of radical radiotherapy following six months of hormone therapy, which was prescribed after a diagnosis of aggressive prostate cancer.

“Do I need to have a cancer? I already have dementia so surely I don’t need another condition…” My husband’s dementia medication was becoming less effective, yet before the hormone therapy he lived very well with dementia, capable of opening conferences, training students about dementia and enjoying a fulfilling social life with many friends both in the dementia world and outside.

This is why the CanDem research project meant so much to me. Losing his life to cancer while having dementia brought us into contact with many expert clinicians, who knew incredible amounts about their own specialism but rarely knew very much about the other condition.

Participating in the lay advisory group for this project enabled me to understand more about the research process and how complex it is. We helped develop questions for participant interviews and I was the practice run participant! We also helped with data analysis, seeing the researchers’ interview and observation notes from the perspective of people who had been through some of those experiences.

Diagnosis, treatment, and staff kindness could not have been improved during my husband’s and my cancer and dementia journey, allthough more knowledge and understanding could have made a huge difference to us.

Margaret Ogden My first experience of serious illness was my grandmother developing dementia. Two years later, my mother was diagnosed with cancer. She was very ill and remained in hospital for the last six weeks of her life, when she also experienced confusion.

It was difficult to know if this confusion was due to delirium, depression or dementia – we never received a conclusive diagnosis. In a strange way, I feel it protected her from the fear and worry she might have felt surrounding her cancer. She went through radiotherapy without a complaint and was positive about recovering following chemotherapy. Alas, this wasn't to be.

Following these experiences, I was motivated to start fundraising for charities. Then I had the opportunity to become involved with research as a lay advisor. I couldn't do anything about my mother's and grandmother's illnesses, but I could try and make a difference to diagnosis and treatment for others.

When I was invited to also join the lay advisory group for CanDem, I was keen to participate. The researchers did their best to explain the study in layman's terms – no easy ask! I gave input regarding the importance of communication, especially during consultations. The role of the family, particularly the carer, was also emphasised. An awareness of integrity of data in GP and hospital records prompted me to stress that errors, omissions and duplications can inadvertently occur – indeed it can often be family members who spot them.

I have since been driven to learn more about data collection and have had thematic analysis training. This may not have happened if I hadn't been involved in this study. It has been a project where input has been reciprocal – I got as much out of it as I put in.

dementia, and 1 in 13 people with a dementia diagnosis also had cancer.

People with dementia and cancer were much more likely to have additional comorbidities (around 70% of people) compared to those with just cancer or just dementia (around 50% of people). They were also older (average 83 years) than those with just cancer (average 69 years)

or just dementia (average 82 years).

People with dementia and cancer accessed both primary and secondary care at slightly higher rates than those who had only one of these conditions, although people with dementia only were more likely to have an A&E admission than those with both conditions or cancer only.

Our second study used ethnographic methods involving observations, informal conversations, interviews with participants, and making notes from medical records. It focused on 17 people with cancer and dementia, 22 relatives and 19 staff members. We did 37 interviews and conducted over 46 hours of observations in NHS settings, including consultations, treatments, scans and follow-up appointments.

Participants were recruited from two NHS trusts in the north of England through a large regional cancer centre providing specialist services (e.g. radiotherapy, rarer cancers), and a smaller cancer unit providing city-wide services (e.g. chemotherapy). In our thematic analysis of the data we read interview transcripts and observation notes to identify themes. Comments and observations corresponding to each theme were then grouped together and the quotes below are examples of those themes.

Overall, we found that participants experienced what we called an “accumulated complexity” from living with both cancer and dementia, which is to say that having dementia made many aspects of cancer treatment and care more difficult for those people, their family members and oncology staff.

These difficulties arose in five main areas, including decision-making, navigating cancer care pathways both practically and emotionally, and monitoring and managing symptoms and side effects at home.

Decision-making Decision-making raised ethical dilemmas and challenges. Concerns were raised by families and staff about the emotional impact on people with memory loss of receiving news about having cancer or seeing changes to their bodies resulting from treatment, such as tattoos for radiotherapy or changes in appearance following mastectomy. What would the effect be if someone forgot that they had a cancer diagnosis? And what would happen if someone became distressed receiving treatment, with staff wondering if they were doing the right thing?

You might have told somebody the diagnosis and then you have to tell them again and you tell them again and it’s that thing of how fair is it to keep telling them?

How fair is it then not to tell them? (L006, lung clinical nurse specialist).

Staff ensured that treatment options were not restricted simply because a patient had dementia. Instead their ‰

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‰prognosis, individual ability to notice side effects and symptoms, and any aftereffects on memory were all considered.

While cancer treatment options were usually discussed and considered carefully with people with dementia and their families, on occasion this was not the case and people sometimes felt they were left with little choice about whether to have treatment or not.

They discuss hormone therapy, and that it can lead to memory problems. [Participant’s] daughter sounds concerned at this ... a little bit more detail is given, but it is not clear to what extent this might be an issue. They are told that [participant] “needs” the treatment, as if it isn’t an option, so the impact on his memory is not an issue for consideration, with the suggestion that they start it and see how he gets on (field notes, L0039-40, man with comorbid cancer and dementia and his daughter).

Understanding and confirming whether a person with dementia had capacity to consent to cancer treatment concerned families and staff. We saw that lots of time and effort was usually spent trying to confirm the person’s understanding about treatment options and what this would mean for them in the longer term.

Navigating care Managing multiple appointments often across two or more hospital departments was particularly difficult for people with dementia and for family members who supported them. Staff also had to share information across services, but this did not always work successfully.

One department didn’t talk to the other, so you’d go down to radiotherapy, because she had to have radiotherapy twice a day... and said “well we have to have it quickly because she’s starting on chemo in half an hour”, they didn’t seem to understand why they hadn’t been told about that (interview, B002, husband).

Getting to and from hospital for treatment was also a challenge. For those who attended appointments by car, appointment times that meant driving through rush hour traffic to arrive on time added to stress. Those who used hospital patient transport were very grateful for the service, but it did not always meet their needs.

Patients were sometimes dropped off with long waiting times before their appointment and, if bookings were not made correctly, the person’s family member might not be able to travel with

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People with comorbid dementia and cancer (and their families) face unique and often complex situations which oncology staff are not always equipped for professionally them. This could result in distress and risks for the patient, as well as the transport and oncology staff who were left to support them.

Balancing needs Care and support that met the individual needs of each person was important and led to better treatment outcomes. Staff who knew the person well, including their dementia diagnosis and how this might affect them, helped deliver personcentred care. But this could be hampered when information had not been passed on by the GP or other services.

How do you examine somebody if they’re not able to give consent to that? If they’re verbally very agitated and distressed, then that can be really challenging (B007, breast clinical nurse specialist).

Staff supported people through their treatment, offering things like flexible appointment times and letters to relatives where agreed by all concerned. They tried to be flexible wherever possible, for example trialling a monthly injection before a three-monthly injection in case there were any negative side effects.

People with dementia required staff to spend a lot more time with them checking their understanding and writing things down.

Well one lot of x-rays she said, “go in the cubicle and take all your clothes off,” and they don't normally say take all your clothes off; they usually give you a gown. I think I left my socks on and I came out with no clothes on and she put the gown round me and then put me on the bed but took that off as well. So, I was literally in the nudey. They were very nice, but probably could have been a little more dignified [laughs] (L004, person with cancer and dementia).

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Patient support teams were able to help people with dementia receive their treatment on time and with the least distress possible. They sometimes offered extra or longer appointments to help people have the time they needed to receive their treatment or understand consultations. But treatment plans did not always consider other appointments people might have and how that could build up to be very long and tiring days.

They don’t appreciate why we get so agitated is because if she’s going for bloods, it’s adding an extra hour or two to an eighthour day and for (mum) that’s quite difficult (daughter of lady with cancer and dementia).

Delivery of person-centred care, however, had to be balanced with the targets and processes of the medical department. Staff allowed families to help their relative “settle in” to treatment and scheduled follow-up appointments via telephone, where possible, to reduce distress and the burden of coming into the hospital. This did mean that family were more responsible for noticing any side effects or new symptoms than they would have been otherwise.

Supportive networks Families and friends supported people with dementia through every step of their cancer diagnosis, treatment and care. Not all families were able to offer the same level of support to their relative.

Some relatives had health problems or physical or cognitive frailty, which limited what they could do.

Family networks also had individual complexities, such as a small network where one or two members felt alone, uncertainty about what their relative would decide about treatment, or conflict between family members. Some people with cancer and dementia did not welcome the support relatives wished to give.

The nurse and Jane agreed it was easier for the [medical] supplies to go to Jane’s house instead of Graham’s. The nurse held out the [catheter] tube to Graham and asked, “do you want to have a go?” Graham handed the tube straight to Jane (field notes, man with dementia and cancer, and daughter) Families often felt guilt, stress and worry while providing support. These feelings were especially common when they had a central role to play in decision-making or when their relative would have long hospital attendances for treatments. Some families felt alone and unsupported at times.

Better cancer care

And I think the cousin felt a little bit like, I suppose it's all down to her. That's a lot of responsibility for her to deal with, as a cousin.

As a daughter or a son, it's sort of expected, isn't it? But as a cousin, it's different (interview, lung clinical nurse specialist, SL003)

We identified lots of ways (many with little or no cost) that cancer services can support people with dementia and their families.

Where no family network was available, finding someone to provide this support (e.g. social worker, formal carer) was hard, and the person often “bounced around” the system as different services argued about who should provide and pay for this support.

It sometimes meant that people did not access cancer treatment.

Identifying dementia Older people should be asked at their initial appointment and periodically at follow-up appointments if they have any problems with their memory or a dementia diagnosis. Assessment and referral forms should include questions about dementia/memory problems and any needs the person has. There also must be space for this information to be recorded on medical records.

Lack of information People with dementia and cancer sometimes felt that they did not always have all the information they needed to understand their diagnosis and treatment. One effect could be that they were less concerned about their cancer, but in many cases this emotional burden was held by their families instead.

The nurse said to Amanda “call up on the Wednesday, get your bloods done and check they’re okay. Then if they’re okay come on the Thursday, but if they’re not okay don’t come otherwise it’s a long journey.” Amanda thanked her. After the nurse walked out, Amanda turned to me and said, “I don’t have a clue what she means” (field notes, woman with cancer and dementia).

Staff were not always aware that the person had dementia, as this might not be clearly documented in their medical records or apparent from conversation with the patient. Staff also talked about their dementia training or knowledge where this was incomplete or could be improved.

Providing staff training All oncology staff should have access to good quality dementia training so that they can offer better support. They should also have details of local referral pathways if they suspect someone has dementia.

Supporting decision-making Personalised and simple written summaries of key information discussed in consultations should be shared. Staff should be encouraged to think about ways to share this information that are easy to understand, such as pre-printed images of body parts on which clinicians can draw information about the location and size of a tumour.

Support through treatment Where possible, there should be flexibility in the timing and location of appointments. Longer appointments at times that are good for the person might help them make more informed decisions and have a better understanding. They should see the same clinician or use the same treatment room where possible.

What does this mean?

Receiving cancer care and treatment is complex for those living with dementia and there are lots of areas where improvements could be made to make things easier. Some of these are down to environments inappropriate for people with dementia and more likely to make attending appointments stressful. Others are more practical, such as the difficulties of managing multiple appointments across different hospital sites.

Taken together these factors have a huge impact on the way families believe they can cope with cancer. They contribute to an emotional burden that is not well understood by cancer services.

Using the findings from this research, we can work with services to make small but beneficial changes.

Appropriate environment Existing guidance on creating dementiafriendly environments should be followed, including clear signage and distinction of different areas through colour coding. Activities and pictures to keep people interested and engaged while waiting for appointments are a good idea, as are drop-off and pick-up areas with staff or volunteers where people can wait while their travelling companion parks or collects the car.

Inclusive approach Families should be consulted to establish the best methods of communication for them, considering what the person prefers in terms of receiving letters, discussing options, and attending

appointments. For example, allowing family members to speak over the tannoy during radiotherapy treatment may be reassuring and calming. The emotional burden many families are under should be acknowledged by staff, who should also make sure that families have access to carer support groups and other resources.

Conclusions This is one of the first studies to examine the cancer-related experiences of people with dementia, their families and clinical teams. We found that people with comorbid dementia and cancer face unique and often complex situations, which oncology staff are not always equipped for professionally.

We observed many examples of flexible and person-centred care, but we also identified many respects in which services can help to make the journey easier. Further research should study the value of offering more community-based services and consider the needs of people with cancer and dementia who do not have a family support network. n Acknowledgements The CanDem project was a collaboration between Leeds Beckett University, University of Leeds, Birmingham City University, the lay advisory group and two NHS trusts in the north of England.

We wish to acknowledge Laura Ashley, Fiona Cowdell, Michelle Collinson, Amanda Farrin, Ann Henry, Hayley Inman, Liz Jones, Rachael Kelley, Ellen Mason, and Maria Walsh. It was independent research funded by the National Institute for Health Research (NIHR) under its Research for Patient Benefit Programme (grant reference number PB-PG-0816-20015). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

References Cancer Research UK (2020) Cancer incidence by age statistics. London: Cancer Research UK, webpage at www.cancerresearchuk.org.

Hopkinson JB, Milton R, King A, Edwards D (2016) People with dementia: what is known about their experience of cancer treatment and cancer treatment outcomes? A systematic review. Psychooncology 25(10) 1137–46.

McWilliams L, Farrell C, Grande G, Keady J et al (2018) A systematic review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care. Aging & Mental Health 22(10) 1254–71.

Renzi C, Kaushal A, Emery J, Hamilton W et al (2019) Comorbid chronic diseases and cancer diagnosis: disease specific effects and underlying mechanisms. Nature Reviews Clinical Oncology 16(12) 746–61.

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The Journal of Dementia Care 31

The music died, but we’ll meet again with energy and passion When coronavirus arrived, it felt like “the day the music died” to singing groups across Scotland. Diana Kerr set out to record and capture their energy and passion so that they can restart with equal vigour once the virus has been beaten t may not have been “the day the music died,” but it certainly felt like it when the virus hit and singing groups for people with dementia and their carers had to shut down. Nor did we realise how long the shutdown would last.

But we did fear that the experience, energy and passion that had resulted in the singing groups across Scotland and was characteristic of them would be lost.

New groups would struggle and would not benefit from all the information and experience that had been gained over the last 10 years.

Sheila Hardie, an ex-social worker and a dementia specialist, and I decided to gather up all this knowledge and record it, not just for the sake of new groups but also to acknowledge and thank the many people who have given their time and commitment to the various groups. We set about it by sending out questionnaires to the singing groups that had used our original group as a model.

I

History and context In 2010, unable to identify any community singing groups for people with dementia in Scotland, we started a group in Edinburgh and within months the hall was crowded, at one point with 80 people. People were travelling up to 20 miles to north Edinburgh and it was clear that more groups were needed.

Over the following decade the network grew organically. Some of this was by our seeking out people and suggesting they ran a group, some through people hearing about our group, some prompted by talks to churches and at conferences, some from a series of workshops that I gave through the organisation Faith in Older People, and some from groups within the network inspiring others. By the end we had around 20 groups, from Inverness in the north to Glasgow in the west and Dunbar in the east.

They were based on the model that had been established in Edinburgh, but they all developed their own characteristic

32 The Journal of Dementia Care

culture and reflected the geography and demographic of their locality and the skills and passions of those who ran them. All the groups were supported and run by volunteers, some having previous experience of working with or living with people with dementia and many not.

These volunteers were offered and almost all accepted training on dementia, which was provided mostly by me but also Alzheimer Scotland and other organisations in the field. The development of the groups along the lines of the original model was aided by the use of a book, which is a “how to” guide (Kerr 2015). But it was always clear that each group would adapt the model to suit its own needs.

Collecting information Our questionnaire went out at the beginning of lockdown and was designed to elicit information about, the size, duration, financing and organisation of the groups, how sessions were run, and how people were respondng to the crisis. We asked for stories to illustrate groups’ experiences.

From the responses we learned that the length of time groups had been running varied from 10 years to just one session in the case of a group that started in Edinburgh one week before lockdown.

As with the original group, most were restricted to people with dementia and their carers, although in some places they were open to other people too.

They varied in size and composition from “four people with dementia and some younger people” and “12 people with dementia and their carers and also a few lonely people who like to sing,” on the one hand, to “up to 50 people with dementia with their carers” on the other.

Group size was also affected by the number of volunteers available to it. One group reported that “an average session will have 80-90 people in the room,” including volunteers, while most other groups had anything from 10 to 40 in the

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Diana Kerr has over 30 years experience as practitioner, researcher and educator in the field of dementia. She has had a lifelong interest in music-making and now works with Sheila Hardie on the provision of singing groups for people with dementia and their carers. room. One mentioned having a “Therapuppy” to swell the number of volunteers!

Volunters are vital All the groups were dependent on the time and commitment of volunteers, amounting to more than 200 people across Scotland. This is an impressive and heart-warming statistic. Even more impressive is the fact that over the lifetime of these groups, more than 1,000 people with dementia and their carers have had the opportunity to enjoy the music, the companionship and sense of belonging that comes from singing together.

The prominence of volunteers has kept running costs to a minimum, although there are expenses for equipment such as laptops, projectors, crockery, badges, sheet music and refreshments, and maybe a contribution to the venue towards heating costs. No groups had to pay for accommodation, which was given free by churches and in one case by a hotel.

Money was raised in a variety of ways: examples included an initial start-up grant from a local authority and donations from a wide variety of organisations ranging from churches, Rotary and golf clubs, local businesses and the Scouts to charitable foundations, local supermarkets and funeral collections. Although groups are free to attend, there were donation tins for optional contributions.

What is clear from this varied list of donors is the level of recognition in communities of our activities, which

Singing, dancing and having fun Responses to questionnaires Wedding anniversary We celebrated one couple’s wedding anniversary with the theme of “Love and Marriage”. One volunteer dressed as a bride. Another gentleman asked if he could sing a song he always sang to his late wife.

He stood beside the “bride” and sang to her. We were all moved to tears.

Ice cream cones Last summer we provided ice cream cones donated by a local awardwinning café. This sparked conversations about “pokey hats”. We were concerned about the mess but no one had forgotten how to eat a cone!

Power of music William, a new member, was withdrawn and did not engage with anyone during the session, he did not respond to any of the songs. Then pianist started playing a well known Scottish ballad. William sat up and started to sing – he sang the whole song, pitch perfect, the whole group stopped singing to listen to him. He completed his performance with a huge smile. The whole group broke out in applause.

Groups have been about more than singing; they enable a sense of belonging, of companionship and social activity

have had the secondary effect of raising local awareness of dementia. Groups were usually spearheaded by one or two enthusiasts who then sought out volunteers and this meant they were often from similar backgrounds. There was the teacher who knew lots of exteachers, the social worker who had access to social workers, the musician who had a veritable orchestra to call on, the members of a church congregation who had a ready band within the body of the church and others who had friends and neighbours.

Inspiration and flexibility A strong leader who could inspire and utilise the various skills of the volunteers was important. Key to success was that these leaders and their co-workers were flexible and able to adjust aspects of the

group to suit local circumstances.

In the original group we would have refreshments on arrival, which allowed for a period over which people could arrive, settle and talk. After some warmups the singing began, the words being projected on to a screen while a pianist played and one person led from the front. We would start off singing songs in unison then move on to partner songs, rounds and call and response. There would be two songs to walk or dance to and there was always a Scottish section.

About two-thirds of the way through there would be a quiz. This usually consisted of the pianist playing songs with a theme so that participants could guess what they were and what the theme was. We built on these regular meetings with occasional special celebrations, such as Easter, Christmas ‰

Glimpse of her “old self” Peggy was agitated and resistant to participating. One afternoon during a dancing song one of the male volunteers asked her to dance. Her face lit up and she started to flirt. She was delighted to be helped up on to the floor and they sang and danced together. For the rest of the afternoon, she was happy, singing, and relaxed. Her husband was thrilled at the change in his wife and saw a glimpse of her old self. The volunteer always danced with her and worked the same magic.

Laughing and kissing Peter was very confused and distant.

We played a “walking” song that must have meant something special to him and his wife, they danced together. They stayed on the floor after the song had finished – talking, laughing and kissing – and everyone else sat down. We all just waited in silence for them to finish, reluctant to break the moment.

Vol 29 No 1 January/February 2021 The Journal of Dementia Care 33

sense of belonging, of companionship and social activity (see box on p33).

Keeping in touch Stopping the groups because of Covid-19 has deprived people of a rich experience, even though attempts have been made to maintain some contact. In one case the leader selects a song, communicates it by letter or email and asks people to sing the song at around 3pm while thinking about each other. Another sends a short video message to people’s mobile phones with a couple of songs on the church’s YouTube channel.

Other groups have been keeping in touch by phoning regularly or in one instance using Zoom. The pianist prerecords the music and another volunteer works the technology, which allows for the usual starting and finishing songs plus about six others. There is time to chat between songs.

Brighter future

Everyone enjoys themselves, volunteers, carers and people with dementia

‰and royal weddings which provided opportunities for bunting, cake and dressing up.

Judging by the questionnaires most groups continued to use this format as a base, but some developed variations.

One showed YouTube clips from films of songs before the group sang the song, then had refreshments half way through the meeting before showing another clip to be followed by another round of singing. Another group, set up and run by the church, started with a well known hymn and short prayer.

A further variation on the theme was to combine the singing group with the lunch club, the volunteers making lunch for everyone before the singing started.

Elsewhere, someone had the clever idea of “desert island sessions”, where a family member would choose a parent’s or partner’s meaningful songs and provide photos. These were put up on the screen and then reasons for the choices were given by the person if they

34 The Journal of Dementia Care

could do so, or the leader would weave the story.

Amazing and interesting lives were revealed in this way. Groups have been about more than singing; they enable a

I have talked about the passion and energy of volunteers and Covid-19 has brought this out in spades. All it takes in each group is at least one accomplished musician and one person skilled at leading the singing. No professionals or employees are necessary, just some local training about dementia and a small amount of money, but nothing beyond the capabilities of local fundraisers.

When we come out of this crisis, I hope and believe the experience and knowledge gained over 10 years will not be lost and singing groups for people with dementia will return to our communities. n References Kerr D (2015) Singing Groups for people with dementia: a guide to setting up and running groups in community and residential settings.

Gloucester: Choir Press.

Hawker Publications offers a wide range of dementia care-related books, including a bestselling series of cognitive stimulation therapy (CST) titles: – NEW EDITION OF MAKING A DIFFERENCE 1 OUT NOW – NEW DIGITAL EDITION OF MAKING A DIFFERENCE 3

Visit www.hawkerpublications.co.uk

January/February 2021 Vol 29 No 1

Lessons learnt during Covid-19 pandemic This research aimed to capture the experiences of care home and NHS staff caring for older people with Covid-19 and to share lessons learnt about the presentation, trajectories and management of the infection.

The findings are presented under the following themes: clinical presentation; unpredictable illness trajectory; managing symptoms and providing supportive care; recovery and rehabilitation; end of life care: being prepared and supported; infection prevention and control, and promoting partnership through cross sector working and support. The findings are located within a particular time frame and context, however this practical knowledge collected during the first wave has value for the care home sector, and particularly in subsequent waves.

Spilsbury K, Devi R et al (2020) Learning by Experience and Supporting the Care Home Sector during the COVID-19 pandemic: Key lessons learnt, so far, by frontline care home and NHS staff (LESS COVID, UK). Available online: https://bit.ly/33EY8od (accessed 01.12.20).

Health and social care workforce survey – Covid-19 This study explored the impact of providing health and social care during the Covid-19 pandemic on nurses, midwives, allied health professionals (AHPs), social care workers and social workers working in the UK. Data collected from over 3,000 members of the health and social care workforce during the first wave of Covid19 from May to July 2020 sets out key learnings for management to support the wellbeing of staff. The research findings, endorsed by The British Association of Social Workers, outline a series of developments for workforce management including how to improve work context and conditions and how improving connections and communications can be facilitated to aid staff wellbeing.

McFadden, Gillen et al (2020)

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.

Health and social care workers’ quality of working life and coping while working during the COVID-19 pandemic 7th May – 3rd July 2020: findings from a UK Survey. Available online https://bit.ly/2VuWCAe (accessed 01.12.20).

Covid-19 Impact of visiting policies in care homes This rapid review investigated the impact of visitors in terms of infections in care homes, the impact of closing care homes to visitors on the wellbeing of residents and on the quality of care. It found no scientific evidence that visitors to care homes introduced Covid-19 infections, however during the peak of the pandemic most countries did not allow visiting and there are anecdotal reports attributing infections to visitors before restrictions. There is increasing evidence that care home residents experienced greater

depression, loneliness and behavioural disturbance during the period of visitor bans. There is evidence of substantial care provision by unpaid carers and volunteers in care homes prior to the pandemic, therefore visiting restrictions may have resulted in reductions in quality of care or additional tasks for care home staff.

Comas-Herrera A, Salcher-Konrad M et al (2020) Pre-print: Rapid review of the evidence on impacts of visiting policies in care homes during the COVID-19 pandemic. Available online https://bit.ly/2Jujwp2 (accessed 01.12.20).

Hospital care Three systematic reviews were undertaken to understand 1) the experience of care in hospital, 2) the experience of interventions to improve care in hospital and 3) the effectiveness and cost-effectiveness of

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 29 No 1 January/February 2021

interventions to improve the experience of care. The authors conclude that a transformation of organisational and ward cultures is needed that supports person-centred care and values the status of dementia care. It is suggested that changes need to cut across hierarchies and training systems to facilitate working patterns and interactions that enable both physical and emotional care of people with dementia in hospital. In consultation with internal and external stakeholders, the findings from the three reviews were developed into 12 dementia care pointers for service change that are key institutional and environmental practices and processes.

Gwernan-Jones R, Lourida L et al (2020) Understanding and improving experiences of care in hospital for people living with dementia, their carers and staff: three systematic reviews. Health Services and Delivery Research 8(43). Published online 23 Nov as doi 10.3310/hsdr08430 (Open access)

Health and functioning of care home residents There is a perception that complex care and support needs of care home residents have increased, but the evidence is limited. This study investigated changes in health and functioning of care home residents over two decades in England and Wales, using a repeated cross-section analysis over a 24-year period using data from three longitudinal studies. Analysis of 2,280 observations from 1,745 care home residents demonstrated increases in severe disability (requiring support with at least two from washing, dressing and going to the toilet). The prevalence of severe disability increased from 63% in 1992 to 87% in 2014. Therefore over two decades, there has been an increase in disability and the complexity of health problems amongst care home residents in England and Wales. The authors conclude that the rise in support needs for residents places increasing demands on care home staff and health ‰

The Journal of Dementia Care 35

professionals, and should be an ‰ important consideration for policymakers and service commissioners.

Barker RO, Hanratty B et al (2020) Changes in health and functioning of care home residents over two decades: what can we learn from population-based studies? Age and Ageing: afaa227. Published online 17 Nov as doi 10.1093/ageing/afaa227 (Open access)

Emotion regulation and decision making People with dementia may experience impairments in emotion regulation processes that potentially contribute to differential decision-making and well-being outcomes. This paper seeks to clarify the concept of everyday decisionmaking in dementia and map the current state of evidence concerning its associations with emotion regulation. It concludes that emotion regulation processes are associated with decision-making in dementia, depending on type of decisionmaking assessment and emotional experience. The authors outline gaps in the literature to inform a research agenda for promoting understanding of how emotion regulation processes can shape the various decisions that are made by persons with dementia on a daily basis.

Perach R, Rusted J et al (2020) Emotion regulation and decisionmaking in persons with dementia: A scoping review. Dementia. Advanced online publication 23 Nov as doi 10.1177/1471301220971630 (Open access)

Young onset dementia diagnosis Understanding the experience of young people going through the process of diagnosis for dementia is essential to provide person-centred and costeffective services. This study aims to improve the understanding of the personal experience of younger people undergoing investigation for dementia. A modified Delphi approach was undertaken with 18 younger people with dementia and 18 supporters of people with young onset dementia. Results found that 27 statements were rated as

‘absolutely essential’ or ‘very important’ and included (1) for the general practitioner to identify dementia in younger people, (2) for clinicians to be compassionate, empathic and respectful during the assessment and particularly sensitive when providing information about a diagnosis, and (3) remembering that receiving the diagnosis is a lot to absorb for a person with dementia and their supporter.

Analysis found no difference in the scoring patterns between younger people with dementia and supporters, suggesting similar shared experiences during the diagnostic process.

O’Malley M, Parkes J et al (2020) Receiving a diagnosis of young onset dementia: Evidence-based statements to inform best practice.

Dementia (online first). Published online 30 Oct as doi 10.1177/1471 301220969269 (Open access).

Model of communication This review seeks to identify factors associated with communication between nursing staff and people with dementia. Communication is seen as a process of social and/or informational exchange between a sender and a receiver in a context, and factors related to these elements determine the quality of communication.

From 31 included articles, 115 factors were extracted. Based on these results, a model was constructed to give an overview of factors involved in the communication process between nursing staff and people with dementia, providing insight in potential starting points for communication improvement.

Additionally, results suggest that an appealing location, longer duration of interaction, and music in the surrounding may improve communication in certain situations. It was not feasible to include causality or interrelations therefore the authors propose the model as a frame of reference, informing about potential targets to change or improve the communication process in a given situation. van Manen AS, Aarts S et al (2021) A communication model for nursing

36 The Journal of Dementia Care January/February 2021

staff working in dementia care: Results of a scoping review.

International Journal of Nursing Studies 113: 103776. Published online 2 Oct as doi 10.1016/j.ijnurstu.

2020.103776 (Open access)

Experience of young family carers There is little research on the experience of young people as family carers for people living with dementia. This Canadian focus group study sought to understand the perceived psychological well-being of 11 adolescents (aged 12 to 17) who support with care to family members with dementia.

Thematic analysis identified six themes related to psychological well-being: 1) feeling compassion for the family member; 2) finding connection through fun, humour, and mutual affection; 3) helping even though it is not always pleasant; 4) feeling good inside about helping family “do stuff”; 5) believing no one can do it like family; and 6) reflecting that it is just something that they do. The authors suggest that secondary caring roles were mostly positive and may help adolescents forge closer family relationships, find opportunities for personal growth, and overcome challenges to grow more confident.

Perion J, Steiner V, Ames A (2021) “It makes me feel like good inside because I helped him do stuff” – Perceptions of psychological wellbeing in adolescents providing dementia care. Journal of Aging Studies Vol 56 (In progress).

Published online 23 Nov as doi 10.17863/CAM.60403 (Open access)

Use of formulation-led approaches The process of ‘formulating’ in the area of dementia care is at an early stage of development.

This survey sought multidisciplinary professionals’ views about the use of systematic formulations for choosing non-pharmacological interventions for ‘behavioural and psychological symptoms of dementia’ (BPSD). The majority of the 355 participants said they used formulation-led models to inform interventions, but 24% said they did not. Thirty-two

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types of formulation frameworks were named and there was a diverse spread across the UK. It was found that more types of formulation frameworks are used in practice, compared with 2016.

The use of formulations are seen as key to offering an alternative to pharmacological treatments.

The authors conclude that understanding both the value of formulation-led approaches and the obstacles to their use are important to implementing NICE 2018 recommendations.

James I, Mahesh M et al (2020) UK clinicians’ views on the use of formulations for the management of BPSD: a multidisciplinary survey.

Aging & Mental Health. Advanced online publication 13 Oct as doi 10.1080/13607863.2020.183094

Peer mentoring in care homes This paper evaluates a Canadian programme developed to engage community and care home resident volunteer mentors, meeting weekly and visiting in pairs to socially disengaged residents (mentees). The peer mentoring program offered residents opportunities to be equal citizens, regardless of their cognitive or physical challenges. The programme involved 65 community mentors, 48 care home resident mentors, 24 staff facilitators and 74 mentees. It reports that most feasibility objectives were met, and adherence and acceptability were high. There were some resource challenges and low retention rates among resident mentors. Interviews among participants indicated high acceptability and positive perceptions of the program and 29% reduction in depression scores and 15% reduction in loneliness scores for resident mentors were recorded. The authors conclude that there is a potential role for mentorship as a viable approach to reducing loneliness and depression in long-term care settings.

Theurer KA, Stone RI et al (2020) 'It makes life worthwhile!' Peer mentoring in long-term care—a feasibility study. Aging & Mental Health (online first). Published online 30 Nov as doi 10.1080/13607 863.2020.1849023 (Open access)

S B O O K S R& E RS EOSUORUCRE CS E & n Clinical Topics in Old Age Psychiatry Julian C. Hughes and Philippa Lilford (eds), Royal College of Psychiatrists/Cambridge University Press, ISBN 9781108706148, £39.99 This compact and attractive book provides a wealth of information in chapters that originate from articles previously published in the peer review journal BJPsych Advances and is the fourth in the series. Others covered personality disorders, child and adolescent psychiatry and disorders of intellectual development.

The chapters in this text provide a contemporary summary on a range of topics relating to old age psychiatry that the editors argue are relevant to frontline practice.

Many of the authors are rooted in clinical practice and address issues relevant to psychiatrists and their trainees

working in the field.

I note from the list of contributors that many are also academics and clinicals leaders, so the resulting text is a melding of clear, logical, evidence-based and useful information that will be of value to a wide range of clinicians, not just doctors. The editors have responded to peer reviewers and have added sections argued as missing or necessary, such as epidemiology. However, they recognise that there are other, larger textbooks on the market that either go into greater depth on subjects or cover a wider range of issues. This was not the purpose of their text, which is instead intended as an accessible, portable and up to

n Making Relational Care Work for Older People Jenny Kartupelis, Routledge, ISBN 9780367408541, £20.99

This book begins positively with the prologue setting out that “the intention of the book is to review, and present good practice and innovation in creating care environments that work for all involved in them”.

There are six chapters that would provide material for reflection on the meaning, operationalisation and evaluation of relational care, together with examples of innovation and good practice and ethical questions regarding societal and policy priorities.

Sadly, the book does not live up to its intentions. Despite referring to the author’s own research, it lacks the rigour to support many of the arguments and opinions put forward. The first chapter, setting out the components of relational care, is difficult to follow and lacks depth.

Person-centred care, its meaning and practical interpretation is not discussed with any reference to the evidence base, and neither is the argument about why relational care is more relevant than person-centred care as a

model of practice. Examples are given of care services and approaches that Kartupelis claims illustrate relational care, but the arguments are weak.

Throwaway comments such as “risk assessment is common sense” or “many older people these days have not had the experience of eating regular family meals” and there is a “total lack of the older person’s voice” all cast doubt on the validity of other information and opinions given.

A chapter on technology written by a different author, who is not referred to on the front cover, contains basic information but is not put together cohesively. While the book aspires to bring together innovation, and cites some excellent examples of good practice, it is poorly referenced.

Relational care may or may not have a place in the support of older people, but sadly this book does not assist in the debate.

Lynne Phair, independent consultant nurse and director, Dementia the Montessori Way (UK) Ltd

date guide for busy clinicians that they could dip in and out of. I admire this stance and its realism.

Each of the sections and chapters follow the same logical sequence and deliver information in a “punchy” style by offering subtopic headings to incorporate brief bite-size pieces of information that are instantly informative for a busy clinician.

The editors describe this style as being both “rigorous (in its content) and relaxed (in its presentation)”, and they have achieved this with aplomb.

Each of the chapters concludes with the reference(s) from the original paper in BJPsych Advances should the reader choose to explore this

further. This book would be useful for more groups than those identified by the editors.

I imagine that health and social care students, for example, would find it helpful in exploring the field of old age psychiatry, as well as frontline clinicians.

Karen Harrison Dening, head of research & publications, Dementia UK

Resources Key lessons learned during the pandemic by care home and NHS staff are presented in a new report from the National Care Forum (NCF) and Leeds University: LESS COVID: Learning by Experience and Supporting the Care Home Sector during the Covid-19 pandemic. See Research p35. . www.nationalcareforum.org.uk A new resource for care homes from NAPA aims to help care staff and the people they support come to terms with loss during the pandemic. Called Saying Goodbye the resource is based on the premise that activity and care teams have a vital role in coordinating an appropriate response to death and dying when there are so many constraints on how it is done. “Acknowledging loss and saying goodbye is an important part of grieving and here are some suggestions of activities that can help this process,” says the resource, which has been put together by NAPA and Coop Funeralcare. “In collaboration with leaders in this field, we have put together some information to guide you through alternative ways in which we can give

bereavement support and remember those we have lost.” https://napa-activities.co.uk Wearable tech wristbands developed by emergency services in Avon and Somerset will provide essential information on people with dementia who go missing. Worn by the person with dementia the wristbands encode details such as name and next of kin which can be picked up by a special app on a phone held nearby. The wristband was developed by Avon and Somerset Police, the charity Senior Citizen Laison Team and Avon Fire and Rescue Service as part of their Dementia Safeguarding Scheme. The wristbands cost £1 to manufacture and are being piloted in the Bristol and Avon area. “Whilst this isn’t a replacement for good care, this tech is cheap and accessible, so I’ve high hopes this will make a difference,” said scheme leader Sergeant Stuart King. www.avonandsomerset.police.uk Quality Compliance Systems and the National Care Forum have produced guidance for providers on tackling the ‰

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RESOURCES ‰ “double whammy” of flu and Covid-19 in winter months. The 50-page document, Winter Ready, is intended to help prevent hospitalisations, which in turn increase the risk of catching covid. It includes guidance on infection prevention and control, planning and supporting safe hospital discharge, information and technology, and workforce wellbeing. www.nationalcareforum.org.uk A bank of comforting images has been developed by Edinburgh University for a smartphone app with a view to improving the wellbeing of carers of people with dementia. The gallery of images, including landscapes, water features, animals, greenery and the sky, has been selected for the CogniCare app, which provides advice, support and resources for dementia care. Clinical psychologists, as part of the university’s Project Soothe, selected the images based on research showing that they enhanced mood and wellbeing. https://cognihealth.uk

A new augmented voice technology device is designed to use algorithms to provide a person-centred response to the needs of an older person.

Produced by technology startup Sentai, a “smart” speaker similar in approach to Amazon Alexa but focused on care – can detect the mood of a person from their voice and respond accordingly, while providing timely prompts around important things such as medication.

Equipped with sensors, it can monitor the person’s movements, providing updates on their mobility to relatives and carers via an app, and can send alerts in emergencies. www.sentai.ai

“Launching this app has raised the morale of relatives, residents and staff, and given everyone a greater feeling of connectivity and reassurance,” said Vida Healthcare managing director James Rycroft. www.vidahealthcare.co.uk

Vida Healthcare has launched a Family Team Talk app to help keep residents connected with their families during the pandemic. The app is designed to give a snapshot of daily life in the care homes, providing families with instant access to find out about the health and wellbeing of loved ones, updates from staff, photos and videos.

Altura Learning is offering a course on “responding to behavioural symptoms of dementia” as part of its Care and Clinical collection. Learning outcomes from the course include explaining why understanding the underlying reasons for behaviours is crucial to responding appropriately. https://www.alturalearning.com

New poetry collection Time and Place: Collected Poems, a book of poems compiled and edited by Liz Jennings, Keith Oliver and Jess Shaw, is due to be published in January. It is the result of the Time and Place poetry project in which people with dementia wrote poems about their own homes in response to prompts from writer Liz Jennings.

The book contains more than 100 poems and includes Jennings’ writing tips, plus advice and tips from the five student volunteers who supported the project. It is published by Lioness Writing and will be available online from Amazon and Waterstones. See our article on the project on page 20.

Blogs I’m watching

by Mark Ivory

people living with dementia and their caregivers,” she says. www.alz.org/blog/alz

On the US Alzheimer’s Association blog, helpline staff share their favourite memories and personal stories. Most, although not all, the contributors were motivated to join the team by personal experience of dementia, such as Susie, who has been with the association for 24 years and whose mother died with vascular dementia. “When Mom felt agitated, we would go for walks around the neighbourhood looking for pine cones and unique little rocks,” Susie says. “Our neighbours knew my mom had Alzheimer’s, so they were extremely kind when they saw us ‘stealing’ little rocks from their beautiful landscapes.” Despite taking some harrowing calls during the pandemic, other helpline staff also recall moments they describe as “beautiful” or “magical”. Rachel studied gerontology and social work at university and wanted to serve America’s ageing community.

“After volunteering and interning at facilities where I met people living with dementia, I learned about the complicated, devastating and sometimes beautiful aspects of this disease, both for

Jane’s husband was diagnosed with young onset dementia in 2017 but it’s not all doom and gloom, she writes in her Memory for Two blog. She tries to stay focused on the positive aspects of their lives together, although she admits to a “bit of a down day” when the tier 3 rules for Covid-19 were announced. She and a friend had to cancel the walk they had planned together, but “determination beats the blues” is her motto and off she went for a long walk by herself to some amazing places she never even knew existed. “Yet again choices needed to be made and action had to be taken if I was going to lift my mood and no one was going to do it for me,” she writes. www.memoryfortwo.com But Jane’s blog post (see above) draws an interesting response from someone called Carol in the comments section beneath.

Looking on the bright side in grim times is not open to everybody, Carol points out, adding that family carers were being urged to write to their MPs about the particular challenges confronting them

38 The Journal of Dementia Care January/February 2021 Vol 29 No 1

Focus Games, which produces educational board games, has adapted them to meet the requirements of onine meetings via Zoom and similar platforms.

Given the name ZeST, the games enable organisations to train up to 20 staff at the same time. Topics covered range from safeguarding and mental health to nutrition and medication, and staff can run the games as standalone learning sessions or in regular meetings. www.zestfocus.com A new chair from Marsden is designed to weigh patients with limited mobility, while ensuring that staff do not injure

thanks to tier 3 restrictions, about “how support will not be available and the things that help us to cope have been removed from us.” Carol wonders whether the cure is worse than the disease: “For many carers, it is,” she claims. www.memoryfortwo.com Ken Clasper, who lives with Lewy body dementia and has been writing his blog since 2012, has been battling with the blues too. “Trying to stay positive through this virus has been very hard, even though I have my wife to look after me,” he writes.

“I know that I have hit the bottom a few times, and it’s not easy trying to cope.” He says he feels like a “caged bird” and that people with dementia are being ignored and left to find their own way. It has done his sleep problem no favours. “My graphic dreams and nightmares are back, and it’s frightened my wife on a few occasions, because she has to cope with the nightly horrors, and if she tries to help, she then becomes part of the horror.” Perhaps it is linked to incessant news coverage of the virus, he speculates. “I don’t always listen to the national news because it’s all about the virus, where the local news is different on ITV.” https://ken-kenc2.blogspot.com

RESOURCES & EVENTS themselves when assisting them. The Marsden M-250 is a chair scale with a seat that can be raised or lowered to help patients comfortably get into and out of it. The company says tests showed that the effort required by staff to help the patient out of the seat was greatly reduced when compared with a standard chair scale or wheelchair. www.marsden-weighing.co.uk OpenClean Technologies has launched the PullClean handsanitising door handle, which is designed for bathroom and toilet doors as well as hallway and office doors. The company says that the handles take less than 10 minutes to install and that hand sanitisation compliance in organisations more than tripled when they were tested. www.openclean.co.uk Regency Design has produced a range of large and small automatic hand sanitising units and temperature reading systems for residents and staff in care homes. Regency says the

sanitisers are lightweight and coated in a SteriTouch Antimicrobial powder to prevent the growth of germs on the surface. Optional glove and mask boxes can be added to the side of the units. An IR thermal scanner has also been launched which can read people’s temperatures at 80cm away. www.regencydesign.co.uk An audit tool for infection prevention and control procedures in care settings has been introduced by a partnership involving National Care Forum, Quality Compliance Systems and Standards Wise International.

The Infection, Prevention and Control Compliance Assessment Tool takes account of the Care Quality Commission’s inspection methodology and the latest learning on Covid-19 from specialists. It is intended to help care settings assess how well they are doing, identify areas for improvement and bring the guidance together in one place. www.nationalcareforum.org.uk

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 26 February Dementia Conference 2021 International conference, in webinar format, focused on the science of dementia. https://dementia.neuroconference s.com n 9-14 March 15th International Conference on Alzheimer’s & Parkinson’s Diseases Now moved online, the conference hosts presentations on the mechanisms of Alzheimer’s and potential new treatments. https://adpd.kenes.com n 23-26 March Research Conference 2021 Alzheimer’s Research UK conference on the latest findings in dementia research, now taking place online. Registrations from the cancelled 2020 conference have been transferred to this date. www.alzheimersresearchuk.org.

n 22-23 April International Conference on Alzheimer’s Disease and Aging Due to take place in London, the conference brings together scientists and researchers to discuss experiences and research results. https://waset.org n 8-9 July Dementias 2021 Wide-ranging conference due to take place at the Cavendish Conference Centre in London, including a look at the impact of Covid-19 on dementia practice. www.dementiasconference.com n 20-21 August Alzheimer’s Disease, Dementia and Ageing Looking at science and clinical practice, this Amsterdam conference includes a track on dementia nursing. https://dementia conference.euroscicon.com n 29 November-1 December 31st Alzheimer Europe Conference Scheduled for Bucharest, international contributors share research, projects and experiences. www.alzheimer-europe.org

UKDC in brief continued from p12 Conflicting worlds collide Medical practitioners from outside care homes often have views that conflict with those of care staff when it comes to care and support for residents with advanced dementia. Dementia UK research fellow Zena Aldridge, discussing her research on end-of-life challenges faced by nursing home staff, said that they were often emotionally invested in residents in a way that GPs and other medical practitioners weren’t. “Sometimes those two worlds collided – what one wanted wasn’t the same as the other,” she said. “Care home staff sometimes felt that their voices weren’t valued, despite the fact they they knew the person with dementia and their family incredibly well, and that they were over-ridden by professionals who perhaps didn’t have that insight or knowledge of the individuals.”

No patients with dementia?

A powerful picture of hospital life for dementia specialists and their patients during covid was given by Jeni Bell and Sarah Mould from University Hospital Southampton. Bell, a specialist dementia nurse, said daily patient admissions flagged as having dementia plummeted from 55-70 names before the pandemic to 10-20 names after it struck. “We noticed very quickly that dementia had become deprioritised and the personhood of people wasn’t being recognised. They were becoming just another person that would come into hospital that we would need to move on to free up hospital beds.” As a specialist practitioner, Mould said they had had to take matters into their own hands: “There were no referrals coming to us [from within the hospital]; it was as though there were no patients with dementia. We decided we had to go and find them. We made a new contact sheet which we updated daily.”

Care homes and the media narrative Research by De Montfort University and Dementia UK analysed the unfolding media narrative on coronavirus and the care system.

Dementia UK head of research Karen Harrison Dening told how the story began with the dominance of hospital care, moved to the plight of care homes, then to the death rate in care homes. “These three timeframes highlighted an overall changing narrative as we saw the crisis in care homes receiving national acknowledgement,” she said.

Technology – a good alternative for now Nothing is going to be the same as meeting face to face, being in a room together, but actually for now using technology, meeting via Zoom, is a good alternative, and we are working hard to get as many people as possible able to access groups in this way, to become “techenabled” while there aren’t other options, said Jill Pendleton and Sarah Butchard, Merseycare NHS Foundation Trust..

Intergenerational inspiration ‘Bet you can’t do that in hospital’ – that was the challenge given to Jo James, Nurse Consultant, Imperial College Healthcare NHS Trust at a conference on intergenerational work. It proved an inspiration. Lucy Gilby, from the specialist dementia care team at Imperial, described a project created and piloted with Dr Nicola Abraham, Royal Central School of Speech and Drama (see also article on pp22-25). They conclude: ‘We won’t be defeated by Covid’. There are plans for live intergenerational projects using tablets, miracast technology and projection.

Carers report on the impact of lockdown Dr Clarissa Giebel, Liverpool University research fellow, reported on a Covid-19 study in which 50 people with dementia and their carers were interviewed about how public health restrictions on services had changed their lives. Only two weeks into the first lockdown, she said, carers noticed a deterioration in the symptoms of loved ones. “They attributed it to being restricted to their own home, they weren’t often going out and having physical exercise, they weren’t having any social interaction, so there was also a lack of cognitive stimulation by just being in their own home,” Giebel said. “That created a huge concern and uncertainty for many carers.”

Vol 29 No 1 January/February 2021 The Journal of Dementia Care 39

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