Journal of Dementia Care - September/October

For all who work with people with dementia

Vol 28 No 5 September/October 2020

A gentler side to lockdown Also inside this issue:

n Dementia care services and minority ethnic communities n Sight and visual processing n Reducing polypharmacy

For all who work with people with dementia

Vol 28 No 5 September/October 2020

n Project updates & viewpoints

Inside this issue...

24

Slow living: a care home in lockdown

14

Care homes have been stretched to the limit – and beyond – in the pandemic, but Charlie Hoare also found a gentler side to life during lockdown. Also, the growing use of technology for communicating with families has exciting potential, he reports

‘Therapeutic lying’: feelings are the key to our response 16 Always telling the truth may look like a simple matter of professional integrity.

But Shirley Pearce argues that feelings are sometimes more important than facts

Dementia care services and minority ethnic communities 18

30

Dementia incidence is rising faster among minority ethnic groups than it is among the white population. Sahdia Parveen and colleagues give their key recommendations for services, based on an evidence review

Family carers need more support than ever

22

Victoria Lyons and Caroline Woodcock consider the many ways Covid-19 and the lockdown has affected families living with dementia

An audiobooks service for hospital patients with dementia 23 A hospital library that had nothing directly to do with patients living with dementia was turned into one that did. Jason Ovens tells the story behind its audiobooks service

32

The CASCADE project: exploring a ‘guest house’ concept 24 A Dutch “guest house” concept offers a new approach to dementia care before and after a hospital stay. Raymond Smith and colleagues explain how it is being introduced in the UK

The voices of people with dementia, loud and clear

26

Scottish activists pioneered the assertion of rights for people with dementia across the globe. Philly Hare and Arlene Crockett chart this history in their new book Loud and Clear

n Features

Self-assessment to raise standards of hospital care

28

Regulars

How best to raise standards of hospital dementia care? As part of our hospital series, Jane Gilby says there is no better answer than self-assessment based on the Dementia-Friendly Hospital Charter

n Comment by Mark Ivory

Reducing inappropriate polypharmacy in care homes

n JDC Asks

30

An older adult may take several medicines and heighten their risk of side effects. Aiysha Saleemi, Caroline Chill, Mandeep Butt and Aileen Jackson report on a care home project to reduce the use of multiple medications

A valuable specialist role to support end of life care

32

How can staff be supported to deliver better end of life care in community settings? Marie Poole and colleagues describe how a new Dementia Nurse Specialist (DNS) intervention was implemented and tested in primary care, arguing that the role could meet the requirements of recommended best practice

How dementia affects sight and visual processing

36

Visual impairment is common among people with dementia and may go untreated even when it is treatable. In the first of two articles on the impact of dementia on eyesight, Marianne Piano considers treatable sight loss and visual processing pathways in the brain

5

n News

6 12

n Dementia Diaries

13

n Research reports

39

n Perspectives Grace Meadows 25 n Books

n Resources n Events

41 41 43

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 3

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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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Journal of Dementia Care Advisory Board Caroline Baker, Barchester Healthcare Professor Dawn Brooker, University of Worcester Dr Nori Graham, Vice President, Alzheimer’s Society and Alzheimer’s Disease International Tessa Gutteridge,Young Dementia UK Jo James, Imperial College Heathcare NHS Trust Rachel Niblock Dementia Engagement and Empowerment 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, Sunrise Senior Living Professor Graham Stokes, HC-One Professor Claire Surr, Leeds Beckett University Dr Amanda Thompsell, South London and the Maudsley NHS Foundation Trust Toby Williamson, independent consultant Lucy Whitman, writer, editor and trainer in dementia care

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

Dr Hazel Heath, independent nurse consultant: older people

Time for talking to stop and change to happen Mark Ivory, Editor, Journal of Dementia Care avid Cameron’s former policy chief Camilla Cavendish could lead the government’s long-promised shake-up of social care in England, says The Guardian (27 July), and if the story is true then the initial proposals are radical. They would see social care moved out of local government into the NHS with an additional £22.5 billion in funding, free personal care for older people as in Scotland, and a new tax levied on the over-40s to pay for it.

Whether the government has the courage to bump up national insurance contributions for many of its core voters remains to be seen, but recent experience has amply demonstrated just how powerful the case is for more investment in social care. As things stand local government has been racking up costs in an attempt to meet demand for social care during the pandemic and ad hoc handouts from the Treasury haven’t covered the extra expense. To make matters worse, some care providers will be forced out of business, particularly if people’s fears about a move into care continue.

Unless the government acts, the result will eventually be more damaging cuts across health and social care. That is the worry expressed in this issue of JDC by Victoria Lyons and Caroline Woodcock (p14), who are afraid that Admiral Nurses like them may be seen as “nice to have” rather than “need to have”. Yet their role has often been indispensable in helping families of people with dementia adjust to lockdown and its aftermath.

In other words, one of the first casualties of fiscal retrenchment could be personcentred care. Aiysha Saleemi and colleagues (pp26-27) reflect on its importance in shifting away from an unthinking reliance on multiple medications for people with dementia towards non-pharmacological options like music, massage and touch therapy. A Dutch “guest house” concept of residential care, discussed by Raymond Smith and his co-authors (pp20-21), encourages holistic dementia care planned around the person’s abilities, strengths and interests. How can schemes such as these be helped to prosper?

In her article (pp32-34), Marianne Piano refers to a growing body of evidence showing that some of the sight problems experienced by people with dementia are treatable and not just an inevitable part of the condition. But they are less likely than others to access those treatments unless they are helped to do so. How can we make sure that this help is forthcoming in the future?

Some of our contributors have gathered up crumbs of hope from the pandemic: the role of volunteers and community groups, the potential of technology, and (for those in a position to achieve it) a slower pace of life redolent of a time when, in Charlie Hoare’s words (p12), “our nation was arguably at its happiest”. How will such hopes be enabled to flourish? Only if the health and social care system around them is fit for purpose. As Wendy Mitchell says (JDC Asks, p10-11), “It’s time for the talking to stop and major change to happen.”

D

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

Writing for JDC:

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

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

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

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 5

NEWS

News in brief Liberty safeguarding changes on hold Plans to replace the Mental Capacity Act deprivation of liberty safeguards (DoLS) with new “liberty protection safeguards (LPS)” have been put on hold by the government. The Department of Health and Social Care (DHSC) has told the care sector “not to prioritise” LPS, which had been due for implementation in October. No new date for implementing the LPS, which were enshrined in law a year ago, has been given but it is now unlikely they will be implemented before October 2021. An email from the DHSC to the LPS Implementation Steering Group said: “We are acutely aware of the pressures that Covid-19 is exerting on the health and social care sector and understand that you may also be facing pressures too… At this time, we are considering the implementation timetable for LPS in light of the pandemic. In the meantime, we are not asking that LPS preparation be prioritised, which we will make clear in a national statement as soon as we can.”

Bereavement journey support project A new dementia support project in Wales will see bereavement charity Cruse working in partnership with Alzheimer’s Society Cymru. Called “Supporting loss along the journey with dementia”, the project focuses on improving access to pre-bereavement support and assisting people diagnosed with dementia and their families in managing and coping with feelings of loss. Under the project plans Cruse Bereavement Care Cymru and Alzheimer’s Society Cymru will recruit and train volunteers, develop a new training module, deliver awareness raising sessions and develop fact sheets for people with dementia and carers. Sue Phelps, country director for Alzheimer’s Society Cymru, said the period from diagnosis was an “enormously complex and emotional time”. She added: “Improving access to pre-bereavement support and helping people better cope with the feelings of loss and grief through their journey is vital to helping people live well with dementia.”

Immigration system excludes social care Social care workers have been excluded from the government’s new points-based immigration system, despite calls for special arrangements for the sector which already has 122,000 vacancies and depends heavily on staff from overseas. Sector bodies condemned the measures with the National Care Forum (NCF) describing them as the “wrong policy at the wrong time.” It said the measures, which take effect from January, would be implemented “in the midst of the flu season and a predicted second wave [of coronavirus] when social care will need all the staff it can get to support the entire health and social care system.” Professor Martin Green, chief executive of Care England, said the government had failed to pay attention to the sector’s specific needs. “The impending threat of the international workforce supply being turned off has the potential to destabilise the sector even further with potentially disastrous consequences,” he said.

Care homes ‘thrown to the wolves’ during pandemic Care homes were “thrown to the wolves” when Covid-19 struck and 25,000 hospital patients were discharged without prior coronavirus tests, an influential House of Commons committee has said.

The Public Accounts Committee (PAC) described the failure to test before discharge, designed to free up hospital beds for critical care patients, as an “appalling error” that was allowed to occur despite clear evidence of asymptomatic transmission.

It condemned poor supplies of personal protective equipment (PPE) and expressed concern about the “strain and trauma” endured by health and social care staff over many months.

Calling on the government to be better prepared for the possibility of a second wave of the pandemic, the PAC said inadequate PPE had hit staff morale while the lack of timely testing had led to increased stress and absence.

“The failure to provide adequate PPE or testing to the millions of staff and volunteers who risked their

lives to help us through the first peak of the crisis is a sad, low moment in our national response,” said committee chair Meg Hillier MP. “Our care homes were effectively thrown to the wolves, and the virus has ravaged some of them.”

According to the National Audit Office (NAO), 25,000 patients in England were “discharged urgently” on official advice between midMarch and mid-April with no requirement for a prior test.

More than one in three care homes reported a coronavirus outbreak between 9 March and 17 May, peaking at just over 1,000 homes in the first week of April.

Alzheimer’s Society said it had raised concerns “right from the start” about discharging hospital patients too hastily to care homes.

“This report sadly vindicates these concerns - too late for the thousands of people who have died, the largest number of whom have been people with dementia,” said director of research and influencing Fiona Carragher.

Welsh ‘league table of shame’ Care Forum Wales, which represents care homes, has drawn up a “league table of shame” listing the “terrible ten” local authorities paying the lowest care home fees. Forum chair Mario Kreft, who has expressed concern that many Welsh care homes will not survive the coronavirus crisis, said there was a gulf between the best and worst paying local authorities and that he would write to Assembly members to complain about the postcode lottery. Care Forum Wales has launched the “Cheapskate Awards” as a way of publicising the discrepancies, highlighting Flintshire, Denbighshire, Anglesey, Wrexham, Gwynedd, Carmarthenshire, Powys, Neath, Swansea and Ceredigion as offering the lowest fees. “It’s hard to see how many care providers can continue in business with fees at this level and they really represent an insult not just to the staff but also to the 20,000 care home residents across Wales,” Kreft said.

6 The Journal of Dementia Care September/October 2020 Vol 28 No 5

Celebrating lives: Staff, residents and families reminisced online about those who have died in the past year, in an event organised by provider Colten Care. It featured poems, music, hymns, readings and prayers. At Newstone House in Dorset, they hand-painted pebbles in memory of friends they have lost.

NEWS

Test kit failures delay care home coronavirus testing A government-backed regime for giving care home staff and residents regular coronavirus tests has been delayed in many places because test kits have failed.

Safety issues were found with one of the major test kit brands with the result that regular testing is now not expected to be universal until 7 September, despite the government’s previous target of 6 July.

Charitable care provider Methodist Homes (MHA) voiced frustration that it had been without routine testing for residents and staff for weeks because of safety issues with tests made under the

Randox brand name.

In early August, MHA chief executive Sam Monaghan said that it was “yet another blow” on top of a litany of government failures which had been identified by parliament’s Public Accounts Committee.

“For a few weeks it felt like we could start to re-introduce some semblance of normality back into our homes, welcoming back health visitors, outdoor socially distanced visits where it was safe to do so and awaiting the green light from local public health for more family contact,” Monaghan said.

“We are now heading into

Caution urged over opening to visitors: As coronavirus mortality rates came down in care homes during July, the Independent Care Group (ICG) urged caution in opening up to visitors. Fears over a second wave of the virus meant that better testing arrangements needed to be in place first, said ICG chair Mike Padgham. Referring to statistics showing a decline in care home Covid-19 deaths to 69 people in the week ending 24 July, from 95 two weeks earlier, Padgham said: “The figures show a significant and welcome fall in care and nursing home deaths, which is wonderful news. However, we have to remain vigilant…. We need to slow down. There are far too many uncertainties at the moment for us to allow relatives back in to visit residents in care and nursing homes, however much we want to do so.”

our third week of no testing for the majority of our care homes following the Randox debacle and we understand it will be weeks before it is rectified.”

But health and social care

Lancet updates list of lifestyle risk factors for dementia Up to 40% of dementia cases could be prevented by changing lifestyles in the light of 12 known risk factors, a panel of world-leading experts has claimed.

In an update to its 2017 report on dementia prevention, the Lancet Commission identified three new risk factors which it said were associated with 6% of dementia cases: head injuries, excessive alcohol consumption and air pollution.

“Our report shows that it is within the power of policymakers and individuals to prevent and delay a significant proportion of dementia, with opportunities

to make an impact at each stage of a person’s life,” said study lead author Professor Gill Livingston from University College London (UCL).

“Interventions are likely to have the biggest impact on those who are disproportionately affected by dementia risk factors, like those in low- and middleincome countries and vulnerable populations, including black, Asian and minority ethnic communities.”

The remaining nine risk factors originally identified by the Lancet Commission as associated with another 34% of dementia cases are: less education, hypertension,

hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, and infrequent social contact.

Less education in early life, hearing loss in mid-life and smoking in later life are associated with the biggest proportions of cases at 7%, 8% and 5% respectively.

“The beauty of this report is that it focuses on both population-wide recommendations for policy makers and governments and tangible action that individuals can take to reduce their risk,” commented Alzheimer’s Disease International chief executive Paola Barbarino.

Social isolation greater dementia risk than thought: Being over 55 and living alone with little social contact raises the odds of developing dementia by 30%, a study led by University College London (UCL) scientists has found. They reviewed evidence from 12 studies in seven European and Asian countries, concluding that social isolation could be a greater risk factor for dementia than previously thought. “More and more people are living alone, particularly older people, and some studies have also suggested that increasing numbers of people are experiencing loneliness in countries such as the UK,” said Dr Roopal Desai. “Our findings suggest that low social contact could have serious implications for dementia rates, especially as dementia rates are already rising due to ageing populations.”

The studies reviewed by the research team gathered data from 21,666 people aged over 55 and living alone was used as a proxy measure for social isolation, which is otherwise hard to quantify. The researchers said that a previous study in 2017, led by Professor Gill Livingston, had calculated that, if social isolation was eliminated entirely, dementia cases could be reduced by 5.9%. But the new study suggests the true figure is even higher at 8.9%.

secretary Matt Hancock suggested that new LamPORE swab tests, which can provide results in 90 minutes, could help to address the problem in care homes.

Poor experiences of hospital care Hospital patients with dementia have poorer experiences of care, especially in relation to hydration, respect, dignity and communication.

According to the Care Quality Commission’s (CQC) latest inpatient survey, patients with dementia also had a poorer overall experience of care than patients who did not have dementia.

The survey, carried out in 2019 and based on responses from 77,000 adults who had had a hospital stay in July, found that those with dementia had a poorer experience of care on five out of nine dimensions investigated, compared with a worse experience on just three of these dimensions in the 2018 survey.

Fiona Carragher, director of research and influencing at Alzheimer’s Society, said the CQC’s findings confirmed the charity’s fears. “Our analysis published at the start of this year also showed an increase of over a third in emergency hospital admissions among those with dementia, with a lack of quality social care often prolonging their stay unnecessarily,” she said.

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 7

NEWS

News in brief Burden of unpaid care from pandemic Numbers of adults providing regular help or support to someone outside their household have increased more than four-fold during the pandemic. Nearly half (48%) of UK adults reported providing help to someone outside their home during April, compared with 11% who reported doing so for an older, disabled or sick person before the pandemic. Nearly a third (32%) gave help to someone they had not helped before the pandemic, while those aged 45-64 were most likely to provide this kind of support with 60% doing so, the new data from the Office for National Statistics showed. “In a matter of months, millions of people – most in their 40s and 50s and holding down a job - have started caring unpaid for family members and friends who would otherwise manage okay on their own but are now at risk of the virus,” said Carers UK chief executive Helen Walker.

Dementia short film collection A collection of short films by people with dementia is now available to be viewed on the DEEP website. The films, funded by a grant from the National Lottery Community Fund, were made by groups from around the country: Ashford Phoenix, Pathways in Bradford, a peer support group at the Beth Johnson Foundation and the SUNshiners. According to Rachael Litherland from Innovations in Dementia, which hosts the DEEP network of dementia voices, the 22 films showcase myriad ways in which people are living with dementia and show that, though a diagnosis of dementia might be life-changing, it need not be life-ending. The films can be found on this link www.dementiavoices.org.uk/deepmoments

Dementia care advocate dies Barbara Pointon, whose role in a landmark TV documentary helped to put dementia in the public limelight, has died.

In 1999, she appeared in ITV’s Malcolm and Barbara: A Love Story, in which she was shown caring for her husband Malcolm who had dementia.

The programme received extensive media attention and was among the first to get the nation talking about dementia as an issue. Barbara herself was diagnosed with a rapidly progressive dementia and had been living with the condition for two years.

In 2004, she won an important legal case, in which it was ruled that the NHS should fund nursing care in people’s own homes, a significant milestone in the

development of NHS continuing health care to cover health needs of people with dementia.

Dr Nori Graham, vicepresident for Alzheimer’s Society, said: “Barbara was absolutely key in the establishment of the right for carers of people living with dementia to receive free NHS care at home.

“The right to continuing health care funding at home only came about because of Barbara’s relentless fight for it. Barbara, a big thank you for all your courage and everything you achieved for carers.

“It was a privilege for me to have known and worked with Barbara. I send my sincere sympathy to the family.”

Pen pals: When lockdown began Bristol-based charity Brunelcare leapt into action with a volunteering scheme to tackle loneliness. Mary, 86, who lives in its Colliers Gardens extra care housing, struck up a pen pal correspondence with 14-yearold Eva. “You’re never too old to make friends,” Mary said.

“It’s from the Queen!”: Jessie Normansell shows her card from the palace marking her 100th birthday.

Jessie, resident at Borough Care’s Bruce Lodge care home in Stockport, also got cards from all over the world as part of the Postcards of Kindness Facebook group.

Retinal link between diabetes and dementia Could the biological mechanisms that produce retinal damage in diabetes be the same as those which cause Alzheimer’s disease in diabetics? Researchers in Northern Ireland and Spain are co-leading a project to cast more light on the role of diabetes as a risk factor for dementia. People with type 2 diabetes have twice the average risk of developing Alzheimer’s and researchers hope to discover whether evaluating the retina could help with early identification of cognitive impairment. “Importantly, this study will help us to understand better the mechanisms of cognitive decline in people with type 2 diabetes, which is required for the development of new treatments,” said Queen’s University lead researcher Professor Noemi Lois.

ADI: slow progress on dementia plans Progress towards the goal of having national dementia plans in 146 member states of the World Health Organisation is “still too slow,” Alzheimer’s Disease International (ADI) has said. In an update on global developments, ADI sees the Covid-19 pandemic as a wake-up call and presses for urgent action on national plans, which have been developed by only 19% of member states. “World governments must heed the lessons of the current Covid-19 pandemic, which has revealed the necessity of working proactively to prepare for the growing numbers of people living with dementia and to safeguard against the disproportionate impact that such pandemics have on the dementia community,” ADI said.

Lifetime achievement award for Grout A leading light behind the 2008 National Dementia Strategy for England, independent consultant nurse Dr Gwyn Grout, has been awarded the prestigious Marjory Warren Lifetime Achievement Award for her exceptional contribution to the welfare of older people. She is the first nurse to have won the British Geriatrics Society award and has been active across the older people’s mental health field, having been instrumental in developing the Advanced Clinical Practitioner curricula in frailty and mental health for Health Education England. “I am flattered beyond belief to receive this wonderful accolade,” she said. “As a nurse reaching the end of my career, it fills me with great pride to be honoured in this way, especially during the Year of the Nurse and as we remember the 200th anniversary of Florence Nightingale’s birth.”

8 The Journal of Dementia Care September/October 2020 Vol 28 No 5

Care body merger proposed: Mike Padgham, who is chair of the Independent Care Group and runs care homes in North Yorkshire, has called for a merger of representative bodies to build pressure for reform post-Covid.

He said organisations like Care England and the National Care Forum should merge to lobby for the government’s long promised shake-up of social care.

“We must step up the cry for reform, otherwise we will just get a hasty ‘thanks’ from the government and everything will go back to normal,” Padgham said.

“We cannot allow that to happen. The social care sector has worked too hard and sacrificed so much to go backwards from here.”

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NEWS

Book celebrates Scotland’s dementia activists Scotland’s dementia activists are celebrated for their major impact on perceptions of dementia in the past 20 years, in a new book published by Life Changes Trust called Loud and Clear.

It tells the story of how people with dementia began campaigning and charts the history through their eyes of their successes and struggles to achieve ground-breaking change.

James McKillop, one of the

first of Scotland’s activists, has lived with dementia for two decades and describes in the book how he got involved.

“In the early days, there was nothing for people with dementia, nobody would speak to me or listen,” he says. “At the beginning, if you had dementia, people wouldn’t ask you the time off your watch. They just regarded you as completely incapable of anything.

“People made assumptions they never asked us anything,

so it’s important we are now allowed to speak and this is happening now. People with dementia are being able to voice their opinions and concerns.”

Philly Hare, author of Loud and Clear, said she had been privileged to research and write the book on behalf of Life Changes Trust. “It has been wonderful to meet or re-meet so many remarkable people and to tell their story,” she said.

See article on pp26-27.

‘Hidden catastrophe’ of lack of social contact: Shortly before care homes began gradually reopening to visitors, leading charities warned of the “hidden catastrophe” caused by residents’ lack of social contact. Dementia UK and Alzheimer’s Society were among charities signing an open letter to health secretary Matt Hancock warning that residents’ health was being severely affected by the absence of family visits in England.

They urged the government to grant particular family members key worker status, enabling them to access care homes and have regular coronavirus tests. The letter said that care given by family members was “essential” to residents’ mental and physical health, but that the restrictions resulting from the pandemic had had “damaging consequences”.

Alzheimer Scotland welcomed the Scottish Government’s announcement of a phased reopening of care homes from early July, saying it was a much-needed step forward for those who had been unable to visit loved ones. The charity said it had heard “harrowing” accounts on its Dementia Helpline of the impact of the visiting ban, with many residents with dementia experiencing a “significant decline in their health and wellbeing”.

Building connections: A life story app called Book of You is a reminiscence tool being trialled by MHA care homes. Families can contribute to it and it has helped them stay connected during the pandemic. Care assistant Lucy Eubank is pictured working with resident Jean Armstrong on her Book of You at Aughton Park home in Lancashire.

CORONAVIRUS & DEMENTIA: NEWS IN BRIEF More research is needed to understand the links between dementia and Covid-19, a leading charity has said, following news that dementia was the most common underlying condition for people dying from coronavirus in Scotland. Figures from the National Records of Scotland indicate that 92% of all those dying from coronavirus between March and June had at least one pre-existing condition and 31% had dementia and Alzheimer’s disease in particular. “More research is needed to understand the link between Covid-19 and dementia, so we can urgently work out why people with the condition are being disproportionality impacted,” said Samantha Benham-Hermetz, director of policy and public affairs at Alzheimer’s Research UK. “While we wait to see the true impact of Covid-19 on people with dementia, we must push forward with research efforts and improve testing, particularly in care homes, so we can put the right measures in place to save lives.”

Almost half of all those dying in care homes from Covid-19 had dementia, data from the office for National Statistics (ONS) suggest. It found that 49.5% of deaths from Covid-19 in England, between 2 March and 12 June, were of people who had dementia as their main pre-existing condition. Overall, 19,394 people with and without dementia died from Covid-19 in care homes over this period. These findings emerged from the Vivaldi study, in which 56% of the participating care homes reported at least one case of Covid-19, and also show that 15.5% of all hospital deaths were of care home residents.

A Covid-19 social care support taskforce, chaired by a senior figure in the sector, has been established by the government to oversee delivery of new infection control measures. The taskforce is led by David Pearson, director of adult social care at the Department of Health and Social Care and a former president of the Association of Directors of Adult Social Services. His brief covers implementation of the care home testing programme and effective deployment of the workforce.

“We’re really pleased that the government has listened to our calls and has announced a coronavirus social care taskforce,” Fiona Carragher, director of research and influencing at Alzheimer’s Society, said. “It’s badly needed to ensure an end to the devastation that coronavirus has wreaked in care homes, and more widely, on people with dementia. As a first step, we are calling for the taskforce to urgently review why people with dementia have been worst hit by the virus, as well as to directly address the complex needs and challenges they have. With the threat of a second spike, the government must ensure that the tragedy of the last few months is not repeated.”

10 The Journal of Dementia Care September/October 2020 Vol 28 No 5

Coronavirus risks faced by care home and health care workers were highlighted in a study from Imperial College London, which looked at 120,000 volunteers tested for coronavirus during May. It found that care workers were 7.7 times more likely than non-keyworkers to test positive, while health care workers were 5.2 times more likely to test positive. These findings are at least partly explained by keyworkers’ likelier contact with Covid-19 cases, the study showing that contact made individuals 24 times more likely to test positive. Commissioned by the Department for Health and Social Care, it also indicated that young adults, aged 18-24, were more likely to test positive than other age groups and that people of Asian ethnicity were more likely to test positive than those of white ethnicity.

Alzheimer’s Society called for emergency financial support for research funding following estimates that it will take 4.5 years for spending on medical research to return to pre-coronavirus levels. The Society, which fears that the pandemic could create a £45 million black hole in its own finances, said coronavirus had dealt a “devastating blow” to its research investment plans.

Urging the government to compensate by ploughing more money into dementia research, research communications manager Hannah Churchill said: “Over 90% of our funded researchers told us they were concerned about the future of dementia research, with good reason - we are not alone in having to pause our research funding programme and reduce research investment.”

A government-sponsored study of care home coronavirus infections is designed to give a detailed picture of how they spread so that homes can react quickly to future outbreaks. Around 10,000 residents and staff have been taking part in the surveillance study, which involves repeat testing in more than 100 care homes in England. The study has been tracking who has the virus, past exposure and infection over time, and the aim is to try to understand why some care homes have had outbreaks and others have not.

“This information will be used to inform the pandemic response in care homes and protect residents and staff from becoming infected with Covid-19 in the future,” said Dr Laura Shallcross from UCL’s Institute of Health Informatics.

People with dementia will be among priority groups for a coronavirus vaccine when one is found. The Joint Committee on Vaccination and Immunisation (JCVI), a government body, has said frontline health and social care workers will have the highest priority, but next will be those at increased risk of serious health conditions including people with dementia.

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JDC asks...

Many local dementia support services have closed or been unable to operate normally during the pandemic and the outlook for them is uncertain. How will people with dementia and their carers be affected? ovid-19 pressed a “pause” button for many dementia services but not people living with dementia.

Most found support services pulled out from under their feet overnight and replaced with telephone calls. Respite provided by day centres, groups and other social activities was lost.

As clinicians we have observed how the loss of structure and routine has resulted in an accelerated decline in cognition and often development or worsening of symptoms of anxiety, psychosis and depression.

Transitions to respite or longterm care have been brought forward for some, whose supporters have needed to factor in risks associated with coronavirus to an already difficult decision-making process.

People with dementia who are alone have become more isolated and vulnerable.

People in the process of assessment for possible dementia have been left with uncertainty and even less access to support services than if they had received a diagnosis. Many older people, with and without dementia, have found themselves among

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the “digitally excluded”.

They cannot get this time back and, for many, the morethan-expected loss of skills and cognition will be difficult to recover, but we must not shy away from opportunities for rehabilitation. Memory assessment and dementia support services are cautiously reopening in a limited fashion, but long waiting lists are likely.

Moving forward, services will need to develop new ways of working and take any learning they can from the recent months. Never has true collaboration and innovation across all services been so important.

Dr Jo Rodda and Dr Janet Carter are consultants in old age psychiatry at the London Borough of Havering Memory Service uring this pandemic, people with dementia appeared to have been forgotten in so many ways.

Life for us revolves around routine and, when that routine is broken, dementia takes over.

Charities have lost millions in revenue and it’s the charities that more often than not provide the services, but why is this the case? Many have had to close services and

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some may never reopen.

Carers have been denied the breaks they need but, not only that, people with dementia have been denied the stimulation we need to keep our brains challenged. Home support has been unavailable, putting informal carers under pressure to perform tasks that others did pre-pandemic, leading to more stress in an already stressful situation.

How do you explain to someone who has already entered a different world that they can no longer go out, no longer hug visitors, no longer see people as part of their routine?

If we don’t do something day after day after day…we simply forget. For many, like myself, what’s been lost due to the pandemic is an unknown until we’re able to face the challenges once more. Will it be too late for some of us?

Only time will tell.

Why is it that dementia is so often at the bottom of the pile?

I’m sure many other conditions believe this to be the same for them. But for me it just shows how the social care system is not fit for purpose and it’s time for the talking to stop and major change to happen.

From left: Jo Rodda, Janet Carter, Wendy Mitchell, Thomas Morton, Heather Brown and Victoria Lyons

12 The Journal of Dementia Care September/October 2020 Vol 28 No 5

Wendy Mitchell is a Dementia Diarist and author of the acclaimed memoir Somebody I Used to Know. was already studying the challenges facing community groups and activities for people affected by dementia when lockdown came into force. These groups tend to be based around meeting socially and are a lifeline to those who attend; they also tend to be small-scale and run on a shoestring.

Funding – already hard to come by for grassroots groups – has been squeezed from all sides: they have been unable to do direct community fundraising, while usually reliable external sources of financial support from larger organisations have often been paused or diverted due to Covid-19.

Our research tells us networking and collaboration between organisations is also essential to keeping groups going, but this has become harder with everything onlineonly, key staff furloughed and so much else to sort out.

But there is hope. These times have shown the importance of community groups more keenly – many have transformed and expanded their roles to form new and thriving “virtual” networks of support that would not have existed otherwise, with newsletters, online meetings, home visits and deliveries, reaching people in their own homes and keeping them connected.

What has been learnt from

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this is hopefully here to stay beyond the pandemic. These times have shown how vital the work of volunteers and community groups is. They have also revealed vulnerabilities in our systems of support for older people and people affected by dementia that have been overlooked for too long.

I hope now that these things will find more recognition and formal support post-lockdown.

Thomas Morton is research associate at the Association for Dementia Studies, University of Worcester. e do not know when day care facilities, carers groups and dementia cafes will be able to open, or in some cases if they will reopen. Already through the weeks of lockdown carers have struggled without the support of family and friends, particularly those who are full time carers. The loss of these valuable services will have a significant impact.

In addition, the lack of opportunity for exercise and loss of social interaction will have resulted in a deterioration in both physical and cognitive abilities among people with dementia. This will mean they will be more reliant on others for day-today living going forward. For my dad, who is living with Alzheimer’s, the lack of exercise and motivation has led to several falls and he is now dependent on a walker to get about in the house.

Without the opportunity to meet other carers in cafes and groups, carers have lost their peer support network. They provide more than just a welcoming and relaxing couple of hours to share caring experiences and socialise. Many carers are already feeling the strain and are struggling with their caring responsibilities.

The ongoing situation is severely affecting both their physical and mental wellbeing and is likely to leave both carers and cared for feeling more stressed and anxious.

The impact? More trips to the

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doctor, more medication and more depression.

This will put pressure on already overstretched statutory services which as we know were barely coping before Covid-19. How will we cope going forward?

Heather Brown cares for her father and she is an ambassador for Dementia Carers Count eople living with dementia and their families have been badly affected in all sorts of ways by coronavirus, one being that they have had to cope with the closure of services that would normally support them.

In consequence there are many gaps in services and increased risks to families: things such as assessments have not taken place, there have been difficulties with accessing support, care packages have changed or even stopped, and placement and day respite services have ceased or altered. All these unwelcome developments had to be managed by families.

People who were in the early stages of memory loss prior to the pandemic may have more pronounced symptoms due to months in lockdown. The forced isolation and changes in routine could mean that, once services reopen, if they do, the number of people who need to be supported outstrips the capacity of those services to support them.

These are the very services that many people see as a lifeline and which have been critical as part of the care plan to keep someone safe and living as independently as possible. As these services closed their doors, some possibly forever, family carers have had to make difficult emotional, financial and practical decisions about how best to support their loved ones.

Services that enable carers to carry on caring are needed now more than ever.

Victoria Lyons is senior consultant Admiral Nurse at Dementia UK

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

This time we feature three of the Diarists musing on the theme of friendship and virtual groups during the Covid lockdown.

Some members of these groups have learned to use platforms like Zoom for the first time – impressing themselves and others!

First George Rook reflects on the groups that have been keeping him going: “How fantastic it is to get to know people well, to have a laugh, a really good natural laugh about all sorts. I mean, we don’t come with many pretences, and airs and graces anyway, because we’re all in it with dementia wherever we come from, whatever we used to do…So, I just think I’ve got incredibly close friends now. You know, I don’t know what it would be like in person. But I’ve met them all in person, or most of them, at some stage. But this is so good. We know each other.”

Next is Gail Gregory, who has quite recently become involved with various virtual groups: “I do feel lucky to have found such supportive people in the Zoom groups. There’s DEEP (the UK Network of Dementia Voices), Innovations in Dementia, the Zoomettes and the Thursday Funster meeting.

And now I’m involved in the Time and Place Poetry Group.

Everyone is so encouraging, and everyone has something different to bring to the group. Apart from the one thing that most of us have in common, which is dementia. But the main thing – we’re not in competition. We just encourage, we’re there for one another, to support through the good and the not-so-good.

Everything I have been involved in has given me a purpose and given me something to think about, and got my brain working. A little bit too much some days, there have been repercussions of bad heads, headaches, most probably from overdosing on Zoom in my case… [But] I have enjoyed every single minute.”

And finally, Mhari McLintock: “I am very happy to say that I have a troupe of lots of lovely women who are part of Women’s Breakfast Chat. And this is our first Zoom meeting with all these lovely people. We have known each other for many years, mainly because we also know each other’s children. I’m very pleased that we are able to do it, I’m very happy about it and we are going to continue doing this in this period that we’re in.”

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

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

Philly Hare, co-director, Innovations in Dementia

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 13

e’ve seen the footage of people in PPE, staff at full stretch, the care industry at breaking point, but there’s also been a gentler side to life in care homes during lockdown. Of course, suspected or confirmed cases of Covid-19 have called for an all-hands-on-deck approach with surgical levels of infection control, but it’s certainly not the whole story.

For us, lockdown has meant no appointments to take people to, no events to organise and attend, and it has made a big difference to the feel of our homes. As an example, one of the responsibilities of Bess Deane, a team leader at Huntington House, would normally be to make sure people were ready for the hairdresser and any other appointments. Now she is the hairdresser.

Bess actually happens to be a qualified hairdresser – she’s one of those annoying people who is brilliant at everything!

But the point is that our staff have been able to focus on “being” rather than “doing”.

The workload hasn’t necessarily reduced, but it has shifted.

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Slow living: a care home in lockdown Care homes have been stretched to the limit – and beyond – in the pandemic, but Charlie Hoare also found a gentler side to life during lockdown. Also, the growing use of technology for communicating with families has exciting potential, he reports

Time spent on the things that matter Instead of trying to keep everyone busy all of the time for fear they might be bored or lonely – two of the biggest focuses of our industry in recent years – care homes across the country are modelling the new trend for slow living. The slower pace of life is actually more akin to how the generation we are caring for used to live, and when our nation as a whole was arguably at its happiest.

In consequence, residents and staff alike are spending time on the things that are most important to them – sitting in the garden, listening to music and dancing, staying n Charlie Hoare is managing director of the Huntington & Langham Estate, which provides residential, nursing and dementia care in Surrey.

14 The Journal of Dementia Care

Holding a “street party” in the empty car park with paid carer Nicola Marie and resident John Orrick dancing in the foreground

in touch with family and friends. The latter, of course, has provided some logistical challenges, but not without plenty of success.

Grandchildren, instead of sitting uncomfortably in the corner of a care home lounge, are putting on impromptu plays via FaceTime, or giving virtual tours of their bedroom or the walk they’ve been doing every day. These are moments and places that our residents may never have seen otherwise.

Younger people’s familiarity with technology has enabled

residents to have genuine engagement with their families that wouldn’t necessarily happen naturally in a care home. The effectiveness of these virtual visits has been one of lockdown’s biggest surprises.

FaceTime will never replace a real hug, but it has been an amazing addition to the support we’re able to provide, not just for residents but for whole families.

There have been so many lessons learned from lockdown, but perhaps none so poignant as the importance

September/October 2020 Vol 28 No 5

of family. Leading dementia charities recently called for relatives of care home residents to be given keyworker status, and I couldn’t agree more.

Our ethos has always encouraged family involvement and many relatives have been part of day-to-day life on the estate for years, from helping to plant out the gardens to running poetry reading groups. But there is always more we can do. Once it’s safe to do so, it’ll be time to up the ante! ‰

Top left: Resident Joanna Donaldson enjoys some pampering from a member of staff during lockdown. Top right: Mollie Bridge takes time out for a mindful moment in the garden. Above: Multi-talented team leader Bess Deane turns her hand to hairdressing.

‘Don’t leave me behind’ To this end, we have teamed up with the University of Surrey on a project called “Don’t leave me behind”, which will look at strengthening social connections between all the generations of a family through shared real-time, interactive experiences.

As an example, if an elderly relative is unable to attend a wedding, a member of the family will be able to wear a lapel camera with an in-built microphone and speaker that will live-stream to a tablet or TV and allow two-way conversations, enabling

relatives to be “present” in more than just spirit.

The project is currently in a bid for funding, but, in the meantime, we are looking at ways in which families can record personalised, video podcasts that we can play to their relatives.

They might record their favourite place to walk the dog using a GoPro camera, or even a conversation around the dinner table – normal, everyday activities that might seem mundane to most of us but have the potential to make their relatives feel involved in family life again. n

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 15

‘Therapeutic lying’: feelings are the key to our response Always telling the truth may look like a simple matter of professional integrity. But Shirley Pearce argues that feelings are sometimes more important than facts ome people with dementia may experience a grief reaction on receiving bad news, however many times they have heard it before. To avoid upsetting them, most professional carers regularly tell untruths (Kirtley & Williamson 2016). There is, of course, a dilemma here: does professional integrity mean telling the truth at all times or is the situation somehow different in dementia?

I am often asked for advice on responding to distressed behaviour. To me as a health professional, both integrity and people’s wellbeing are my priorities, so this dilemma raises several questions. Is telling untruths all right, because everyone does it?

Alzheimer’s Society’s website (undated) condemns the advice never to contradict anyone with dementia as given in the book Contented Dementia (James 2008, p118), but does their view necessarily make it wrong?

In the absence of any National Institute for Health and Care Excellence (NICE) guidelines on this particular issue, we must find a way to disentangle these threads for ourselves. First, we need to consider the importance of psychological wellbeing and how dementia affects it.

According to Kitwood and Bredin (1992), four essential feelings are required for wellbeing, whether or not we have dementia. We need a sense of self-esteem (feeling comfortable with who we are), autonomy (feeling in control of our lives), social confidence (feeling at ease around other

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16 The Journal of Dementia Care

people) and hope (feeling that everything will be all right).

In order to understand the significance of these feelings in dementia, we have to recognise the nature of its effect on memory. A normal memory system stores a constant stream of new factual information, providing the context to our feelings at any given time. We know exactly where we are, how we got here and why we came.

In most types of dementia, however, that supply of factual information becomes progressively more intermittent, until hardly any new facts are being stored.

Previously stored information becomes harder to retrieve, and anything that was never stored in the first place cannot be retrieved at all, even with cues and reminders.

Meanwhile, the storage of feelings continues as before (Guzmán-Vélez et al 2014). In normal memory we interpret our feelings in the light of recently stored facts, but in dementia, with limited access to such facts, the person may not be able to work out what has been happening or why they feel as they do.

People with normal memory live in the present, by reference to recent facts. Those with dementia also live in the present, but they do so by reference to whatever facts are available to them. When current feelings become mismatched with out-of-date facts, they may appear to be living in the past.

People living with dementia often report feeling worthless, having other people choose on their behalf, trying desperately

not to make mistakes in front of others and being told their condition can only get worse.

Here is a case study which shows how these memory problems play into Kitwood and Bredin’s four essential feelings. (Names have been changed in both case studies.)

Case study: Arthur Arthur, who has dementia and lives in a care home, previously owned a house with extensive gardens. One day in late January, we sat by a window overlooking a garden in which nothing appeared to be growing. Arthur said: “It looks awfully dry out there – if it doesn’t rain soon, we’ll have to water the garden.”

That day there had been no rain, so the path was dry; the roses were dormant and no grass or spring bulbs grew there. But the previous week had seen heavy downpours, with more rain and flooding forecast.

I could have responded in a number of ways, affecting the four essential feelings as follows: Don’t be silly, Arthur! Of course there’s nothing growing it’s still winter!

This would have reduced his self-esteem - completely unnecessarily.

Anyway, you mustn’t interfere with the garden – it’s not your job.

Why remind Arthur that he was no longer responsible for a large garden, and his autonomy was now severely restricted?

Honestly! Arthur thinks the garden is too dry!

September/October 2020 Vol 28 No 5

Highlighting his mistake in front of others would cause great embarrassment and destroy his social confidence.

How would that benefit him?

No, you’re wrong – there’s been a flood warning!

Why replace Arthur’s sense of hope with one of impending doom and a threat of flooding?

These responses would have threatened Arthur’s wellbeing; once one element is destroyed, the others are more at risk. A sense of ill-being might well lead to distress and distressed behaviour, causing problems for everyone.

I actually said: “We’re in luck – I think there’s rain forecast.”

The prospect of some “muchneeded” rain after the “long drought” restored his hope and dispelled his anxiety. I was not looking for a clever answer, but by simply focusing on Arthur’s feelings rather than on the facts, I knew what he needed to hear.

Later on, I reflected on our conversation and considered alternative responses that could have enhanced the other essential feelings: So that’s why it looks so bleak! It takes a real gardener to notice these things. n Shirley Pearce is an independent occupational therapist and founder of the charity Understanding Dementia (http://understanding dementia.co.uk) shirleyjpearce@outlook.com

Highlighting his strengths could promote his self-esteem.

I wonder whether we should use a watering can or the hose.

This could promote feelings of choice and autonomy.

Depending on his last response, I could have endorsed his remarks. Agreeing that “all the best gardeners use a proper watering can” or conversely “anyone with a decent-sized garden needs a hose” could make him feel part of the “right crowd” and promote social confidence.

Dementia and lying Lying can be defined as intentionally leaving someone with a false impression of the facts. But, in dementia, facts often slip away so that only feelings are stored with no context to explain them. This must be disconcerting at best and terrifying at worst.

When professionals try to explain and rationalise with facts that have not been stored by the individual, it can be both ineffective and frustrating.

Whether or not any facts are strictly true becomes far less relevant than their effect on the person’s feelings. So it is imperative that feelings be given the priority they deserve.

Someone with dementia will be alert to our feelings as well as their own; authentic tone of voice and congruent body language are crucial. Any hint of mockery or sarcasm will be evident, however well we try to conceal it. If we respect their feelings, that will govern both what we say and how we say it; our response will then affect how they feel. What an opportunity! In most other conditions we cannot influence how people feel to such an extent.

Good feelings become ever more precious as dementia progresses, so professionals should take advantage of this positive aspect of the condition. The main benefit is to the person with dementia, although working like this is also far more rewarding for the family carer, care worker

or health professional.

Not everyone with dementia falls into the category outlined here. In some types of dementia memory is not impaired in this way, while in others it is unaffected in the early stages. Moreover, memory impairment in dementia is unpredictable and intermittent. No-one can tell at the time whether any specific fact is being stored, so a flexible approach is vital.

But, by responding to the person rather than imposing my own (true or untrue) facts on them, I can keep abreast of their reality even if that changes from one moment to the next. The following case study provides an example.

Case study: Betty Although Betty’s husband had died some months before our chat, she kept looking around and asking, “Where’s Fred*?” I

played for time and talked about husbands who are “never there when you want them”.

She said: “Oh, I know - he’s probably playing golf!” So I replied: “Yes, I expect so – it’s a nice day for a round of golf.

My husband plays too.”

We chatted like this for a few minutes and then she suddenly said: “I do miss him since he died.” This took me by surprise, but I could then ‰

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 17

‰ say: “You must have loved him.” Betty responded with a huge smile.

If I had stated categorically that he was dead I could have provoked a grief reaction; if I had said he was alive, I could have caused even more confusion and distress.

Environmental lies Last year, the UK Dementia Congress in Doncaster held a lively debate on the use of “environmental lies” in care homes, which addressed a slightly different issue with a more extreme use of lies such as fake bus stops. I would never set out to deceive anyone by imposing an untruth on them; my answers are entirely driven by the person’s response to their own feelings.

We must never tell an untruth that would harm anyone, but inappropriate truths, however well-meant, can cause great anxiety and distress. There is no merit in repeatedly provoking a grief reaction by “re-orientating” someone who is blissfully unaware that their beloved spouse has died.

Training on this topic should make the distinction clear. If the approach I have discussed breaches ethical, professional or workplace guidelines, perhaps we need to reexamine those guidelines.

Knowingly causing harm to those in our care cannot ever be the right thing to do. n References Alzheimer’s Society (undated) Alzheimer’s Society’s view on Specialised Early Care for Alzheimer’s (SPECAL). London: Alzheimer’s Society, www.alzheimers.org.uk.

Guzmán-Vélez E, Feinstein J, Tranel D (2014) Feelings without memory in Alzheimer disease. Cognitive and Behavioral Neurology 27(3) 117–129.

James O (2008) Contented Dementia. London: Vermilion.

Kirtley A, Williamson T (2016) What is truth? An Inquiry about Truth and Lying in Dementia Care. London: Mental Health Foundation.

Kitwood T, Bredin K (1992) Towards a theory of dementia care: personhood and well-being. Ageing and Society 12 269-287.

18 The Journal of Dementia Care

Dementia care services Dementia incidence is rising faster among minority ethnic groups than it is among the white population. Sahdia Parveen and colleagues give their key recommendations for services, based on an evidence review umbers of ethnic minority people with dementia are predicted to rise much more rapidly than in the white British population. A look at the population statistics indicates why this might be: the 2011 Census found that 19.5% of the UK population described themselves as non-white British, an increase of 13.5% from the 1991 Census when only 6% reported themselves as having a non-white British background.

Although the age profile of minority ethnic groups has been younger than the white British group, this is now changing. Research suggests that, by 2051, minority ethnic groups will have “caught up” with the white British group and, for example, approximately 21% of the Indian population will be aged 65 years or over compared to 29% of the white British population (Wohland et al 2011). An ageing population usually leads to a greater incidence of dementia.

In 2013, the All-Party Parliamentary Group on Dementia estimated that the number of people living with dementia from minority ethnic communities at approximately 25,000. It was recognised that this was an underestimate, as evidence suggested that people from minority ethnic communities were less likely to access services and receive a diagnosis. Wohland et al (2011) predicted that, by 2026, the number of minority ethnic people with dementia would double to 50,000, so it can be inferred that the current number is about halfway in between at something like 37,500.

Owing to the combination of an ageing population,

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improving awareness of dementia in minority ethnic communities and the policy drive to raise dementia diagnosis rates, it is predicted there will be a seven-fold increase in numbers of people from ethnic minorities with dementia compared with a two-fold increase among white British people by 2050.

Research also suggests that certain types of dementia (such as vascular dementia) may be more common in minority ethnic communities (Livingston et al 2017), possibly due to higher rates of type 2 diabetes, hypertension and cardiovascular diseases in these communities. Additionally, a recent study (Shiekh et al 2020) indicates that people of British black ethnicity are 42% more likely to develop dementia after experiencing a stroke, compared to other ethnic groups, perhaps because of uncontrolled diabetes and hypertension.

Evidently there is a growing need to develop and adapt dementia services to be better able to identify, diagnose and support minority ethnic communities. Bhattacharyya and Benbow (2013) conducted a review of innovative practice in service provision for minority ethnic communities in the UK and found only 11 initiatives, including five models of raising awareness, three models focusing on listening exercises, and three on models of service access. It highlighted the lack of work at that time with minority ethnic communities and the need for evidence-based practice.

Reviewing the evidence We decided to carry out a thorough up-to-date review of

September/October 2020 Vol 28 No 5

the evidence base to find out what research had been conducted with minority ethnic communities and to make recommendations for evidence-based practice. We plan to publish a full account of the findings separately, but here we will give a brief overview of the evidence base and key recommendations for dementia services.

We undertook searches of three leading databases: CINAHL, EMBASE and Medline. We used a variety of key terms around ethnicity and dementia, only including studies that had been published in academic journals as this was an indicator of peer review and could be seen as a badge of the quality of the work. We limited ourselves to studies conducted in the UK with minority ethnic populations and published up to July 2019.

Our search revealed 40 articles that fitted our criteria.

To make sense of all the articles we grouped them based on NHS England’s WELL Pathway: Prevention, Diagnosis, Living well, Supporting well and End of life care.

What we found Prevention No research was found that explicitly addressed prevention or risk factors for dementia in minority ethnic communities.

We found four small studies that explored dementia n Sahdia Parveen is senior research fellow, Mohammed Akhlak Rauf is doctoral research student, Saba Shafiq is doctoral research student and Jan R Oyebode is professor of dementia care, all at the Centre for Applied Dementia Studies, University of Bradford.

and minorityethniccommunities

From left: Sahdia Parveen, Jan Oyebode, Mohammed Rauf and Saba Shafiq

prevalence and provided inconclusive results.

recommendations for practice from this evidence base below.

Diagnosis A first step towards diagnosis is help-seeking and there was a considerable amount of research exploring community perceptions of dementia. The issues of stigma, dementia being viewed as normal ageing and lack of knowledge were commonly reported in all studies across different minority ethnic groups. These were seen as delaying a visit to the doctor to seek an assessment.

Five articles explored the use of cognitive tests with minority ethnic populations as part of an assessment to achieve a diagnosis. It was agreed that current tools have shortcomings and that there was still no cognitive assessment tool entirely suitable for diverse cultural groups.

Dying well We found no studies exploring the experience of end of life dementia care among people from minority ethnic backgrounds.

Living and supporting well We found a significant amount of research exploring service use among minority ethnic communities and potential barriers to it. These studies commonly reported barriers at an individual level (mistrust of health care professionals, lack of awareness of services), community level (stigma associated with health care services) and service level (racism and cultural insensitivity). We have highlighted key

Key recommendations Recommendations we found in the literature on dementia support provision for minority ethnic communities were: • access to trained interpreters for people with dementia and their families must be an underpinning service principle • bilingual dementia workers are more successful in engaging and supporting minority ethnic communities than translated information leaflets • where it is not possible to provide bilingual dementia workers, audio-visual educational materials, such as DVDs, should be available • minority ethnic communities prefer using voluntary sector organisations for support, so where possible the NHS, social care and voluntary groups should work in partnership with them • rather than creating new services, existing services should be culturally adapted with the community of interest • for example, the Alzheimer’s Society Carers Information Programme was culturally adapted for south Asian families and delivered with third sector organisations • cultural adaptation of existing

therapies such as specialist reminiscence services for migrants to the UK should be undertaken • practitioners lack the confidence and knowledge to cope with language and cultural differences and should receive training on the subject • inclusion and diversity in dementia is now a key module in the Health Education England Dementia Core Skills Framework and all staff working with diverse populations should have access to this training • efforts need to be made to raise awareness of specialist dementia services at a local level • more investment in community minority ethnic organisations is needed, as well as in health services based in these communities • services should be co-designed with communities in order to be engaging and effective.

Conclusions Despite the growing evidence base for dementia care and practice, we only found 40 articles directly related to minority ethnic communities.

After more than 20 years of research, little is known about prevalence, prevention or risk factor reduction, experiences of families and carers and end of life care for minority ethnic communities.

Much clearly remains to be done by researchers in order to develop evidence-based

recommendations. One area where considerable effort has been made, however, is identifying the barriers and facilitators to service access for minority ethnic communities.

Key recommendations for service development and practice point to a wide range of issues from questions about language, the role of the voluntary sector and cultural adaptation of services, to the confidence and knowledge of practitioners. Implementing them will require a more proactive approach to ensuring dementia care is culturally sensitive and inclusive. n References Bhattacharyya S, Benbow SM (2013) Mental health services for black and minority ethnic elders in the United Kingdom: a systematic review of innovative practice with service provision and policy implications. International Psychogeriatrics 25(3) 359-373.

Livingston G, Sommerlad A, Orgeta V, Costafreda SG et al (2017) Dementia prevention, intervention, and care. Lancet 390(10113) 2673-2734.

Shiekh SI, Forbes H, Mathur R, Smeeth L et al (2020) Ethnicity and risk of diagnosed dementia after stroke: a cohort study using the Clinical Practice Research Datalink. Journal of Epidemiology & Community Health 74(2) 114-119.

Wohland P, Rees P, Norman P, Boden P, Jasinska M (2011) Ethnic population projections for the UK and local areas, in Moriarty J, Sharif N, Robinson J Black and Minority Ethnic People with Dementia and Their Access to Support and Services (SCIE Research Briefing 35). London: Social Care Institute for Excellence.

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 19

WEDNESDAY 11TH – THURSDAY 12TH NOVEMBER 2020 VIRTUAL EVENT BOOKINGS NOW OPEN Plenary speakers • Parallel sessions • Workshops Symposia • Posters • Early bird sessions • Special events

We are pleased to announce that 15th UK Dementia Congress 2020 will go ahead as planned as an all-new virtual conference. The congress will feature a full programme, including plenary and parallel sessions, question and answer sessions, offer a virtual exhibition area and lots of opportunities to network with fellow attendees and more.

We hope you understand our decision to make this change. We have been continuously monitoring the ever-changing circumstances surrounding Covid-19, and are focused on keeping our delegates, speakers and supporters safe during this time. As an exciting virtual event, we look forward to continuing to build on the success of the UK’s most well-loved multi-disciplinary congress on dementia care.

WHY SHOULD YOU ATTEND?

PLENARY SPEAKERS

• •

People living with dementia and their supporters

• • • • • • • •

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

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

careinfo.org/event/uk-dementia-congress

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

in association with

academic partner

stream partners

satellite symposium sponsor

Association for Dementia Studies

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

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

organised by

JournalOfDementiaCare

@JDementiaCare

#UKDC2020

oronavirus has cost the lives of thousands of people with dementia and affected the lives of many thousands more. For many families, for all sorts of reasons, 2020 will come to be seen as the year that changed everything.

Age and the presence of other health conditions have made people with dementia particularly vulnerable to Covid-19. Studies have shown that 1 in 7 people with dementia also have another health condition (Barnett et al 2012), among them high blood pressure (41%), heart disease (27%), stroke (18%) and diabetes (13%).

Many are supported by a family carer and these carers are either adult children in their 50s or 60s (Glasby & Thomas 2019) or they are spouses.

According to Age UK, 1 in 3 over-80s are now carers (2019) and 48.4% have a long-standing illness or disability (NHS Digital 2017). A significant proportion of carers have themselves been “shielding”.

Since a quarter of acute hospital patients and threequarters of care home residents are thought to have dementia, the Covid-19 risk for these groups has been particularly high. Many care providers have also had to make adjustments to support people in a rapidly shifting environment.

Given the additional difficulties of adjusting to lockdown, it is not surprising that people with dementia and their families have been among the hardest hit groups.

As Admiral Nurses, we have been well placed to observe the impact this virus has had and give some of the more prominent examples here.

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Understanding lockdown For people with dementia living with lockdown measures and social distancing has been difficult. They have often struggled to understand the guidelines and many have understandably wanted to n Victoria Lyons is a senior consultant Admiral Nurse and Caroline Woodcock is an Admiral Nurse at Dementia UK

22 The Journal of Dementia Care

Family carers need more support than ever Victoria Lyons (left, below) and Caroline Woodcock consider the many ways Covid-19 and the lockdown has affected families living with dementia also struggled with lack of contact and forced separations.

Conclusions

interact with other people in the way that they would normally.

Families have been forced to work out how to “care from a distance” and have been faced with the challenge of finding ways to ensure that their loved ones stay at home, don’t put themselves at risk and have the support they need to live safely.

Everyday activities Access to shopping and essential items, such as prescriptions, has caused problems for many people.

Some carers have been unable to secure any online shopping delivery slots and have also experienced problems with shopping in supermarkets.

We have spoken to the families of people living alone with dementia who struggled to understand why there were large queues to enter supermarkets and became distressed when out shopping.

Other family carers, who have taken loved ones shopping with them, have been prevented from entering stores because the rules say that only one person per family can go in.

A common feeling described by family members is their sadness and frustration at not being seen as “key workers”.

Due to cuts in respite care,

many carers have found that they no longer have time to meet their own needs. This has been particularly difficult for people who are “sandwich” carers – caring for older adults and children – and for those who are working from home.

Some care agencies have found it necessary to provide care visits only to people who live alone because they have had fewer staff during the pandemic. This has meant some family carers have had to take a more hands-on role to caring and start providing personal care for their relative with dementia.

Care home concerns Deciding the time is right for a relative to enter a care home is never easy and many carers have contacted us with a number of concerns. These concerns range from placements in care homes, isolation periods that people have to complete during admission, levels of care, visiting restrictions and the impact of lockdown, personal protective equipment (PPE) and how to ensure positive communication channels with both their loved one and staff in the home. People on both sides of the care home walls have

September/October 2020 Vol 28 No 5

Coronavirus has left an enormous mark on people with dementia and their families.

And some families are going to find it hard to move into whatever the new normal looks like. As money tightens across health and social care systems (again) we are concerned that support to family carers and the specialist skills and knowledge that Admiral Nurses can provide may be seen as a “nice to have” and not as a “need to have”. Families living with dementia will need support more than ever as we emerge from Covid-19, given the severity of its effect on them.

Services such as ours have been able to offer a lifeline to many of them during the outbreak and we are eager to see it continue. They have suffered more than enough. n References Barnett K, Mercer SW, Norbury M, Watt G et al (2012) Epidemiology of multimorbidity and implications for healthcare, research, and medical education: A cross sectional study.

Lancet 380(9836) 37-43.

Glasby J, Thomas S (2019) Understanding and Responding to the needs of carers of people with dementia in the UK, the US and Beyond. University of Birmingham School of Social Policy.

Age UK (2019) New Age UK analysis finds our over 80s save government £23 billion a year through the unpaid care they give loved ones. London: Age UK, www.ageuk.org.uk.

NHS Digital (2017) Personal Social Services Survey of Adult Carers in England, 2016-17. London: NHS Digital.

An audiobooks service for hospital patients with dementia A hospital library that had nothing directly to do with patients living with dementia was turned into one that did. Jason Ovens tells the story behind its audiobooks service ntil recently the NHS trust Academy Library that I run had little interaction with patients on our wards. We were established essentially to support the library and information needs of staff and students on placement rather than patients. Now, in an important way, this has changed for the better.

Of course, our role continues of finding up-to-date research informing patient care, examples of best practice for service improvement or information for continuing professional development. But, three years ago, the trust board concluded that audiobooks could be the answer to an unmet need which had been identified on the wards, namely for activities to help keep patients with dementia stimulated and engaged during their time in hospital.

The audio-player was the only thing that calmed down the patient, who was very distressed (ward staff).

U

Alleviating boredom and distress Audiobooks were seen as potentially alleviating the boredom of being in hospital and helping to calm people with dementia who became distressed. The Academy Library was contacted to see if this was something we could look into. The idea we came up with was to acquire dementia-friendly audioplayers which patients could borrow during their stay on our wards.

These audio-players are called Simple Music Players, cost £97 each and are sold online by Koto. In March 2018 we applied to our innovation panel for £1600 in funding for 10 music players which can

...helped to occupy the patient to ensure they were not wandering and at higher risk of falls (ward staff).

have audiobooks preloaded by library staff. We also purchased headphones, then signed up to an audiobook subscription service, supplementing the thousands of books available to download freely because they are out of copyright.

Our choice of subscription service was Listening Books, which costs £100 a year and provides a service to over 50,000 members who may find it difficult to read the printed word. It gives access to thousands of audiobooks, radio programmes and TV shows. A staff member on the ward contacts us if they have a patient who has requested an audio-player or whom they think could benefit from one.

Historical romance and murder We have found that the most popular genres are historical romance and murder mysteries.

Agatha Christie, Georgette Heyer and Barbara Cartland are much in demand as are The Archers, Last of the Summer Wine, Hancock’s Half Hour and Dad’s Army. We can also upload freely available

podcasts and radio programmes, some of the most commonly requested being Desert Island Discs, Songs of Praise and Gardeners’ Question Time. Sometimes a patient might have a more obscure or specific request which we are usually able to fulfil with a little more searching.

Library staff demonstrate and gather feedback One of our roles is to take the music player to the ward, where we demonstrate how it works either to the patient or their family or a member of staff. It takes library staff about 20 minutes to get a player ready for use. After a week we will phone the ward to check on the patient’s progress with the music player and enquire whether they would like any more listening material. When they have finished with the player, or when they leave the ward, we collect all the equipment and gather feedback.

Feedback from patients and staff has been positive, for example: I really enjoyed listening to the audiobooks, thank you (patient).

Since the project launch two years ago, we have been pleased with the level of demand. Ensuring that the players, headphones and power cables are all returned hasn’t always been easy and, despite clear labelling and instructions, a few pieces of equipment have gone missing.

Power cables have been a surprisingly major casualty, perhaps because of their resemblance to phone chargers! But we expect these losses to diminish as staff become more familiar with the project and we get more requests for the players.

Rising demand After 18 months we had provided the service to 130 patients and with a regular advertising boost in the trust monthly newspaper demand continues to rise.

Although we pioneered the project with patients with dementia, we have been very encouraged by the expressions of interest we have received from patients with other conditions too. A service that began in dementia care has been shown to have potential for hospital care much more broadly. n

n Jason Ovens is head of library and knowledge services in the Academy Library at Royal United Hospitals Bath

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 23

The CASCADE project: exploring a ‘guest house’ concept A Dutch “guest house” concept offers a new approach to dementia care before and after a hospital stay. Raymond Smith and colleagues explain how the model is being introduced in the UK e have an ageing population with increasing numbers of older, frail people living with dementia requiring access to inpatient hospital services (Age UK 2019). But there are few appropriate facilities to cater for them or their families before or after a hospital stay, despite the rapidly rising costs of inadequate and inappropriate care provision (Wittenberg et al 2019).

Recently in the Netherlands, “guest houses” have been developed for people living with dementia. They offer a safe environment with care provided for those who are about to enter or have just left hospital after a medical intervention. Longer-term residential care services on-site are also available where people may otherwise remain in hospital in the absence of other appropriate care facilities.

Preliminary evidence suggested access to these Dutch guest houses not only speeds up recovery from an operation but may also enable people living with dementia to spend less time in hospital, be part of the local community, and receive support from specially trained staff. On that basis, the CASCADE project was developed to explore the suitability of the guest house concept in England.

W

Background CASCADE stands for Community Areas of Sustainable Care and Dementia Excellence in Europe. It is a cross border collaboration which includes organisations in Belgium, France, the Netherlands and England. It

24 The Journal of Dementia Care

CASCADE new build houses at Harmonia Village, with interior views including a vintage jukebox

was formed to improve the lives of people living with dementia and older people, predominantly residing in coastal areas connected by the English Channel and North Sea (“2 Seas”).

All project partners joined forces with key stakeholders (e.g. people living with dementia and family carers) to identify best practice in community integrated dementia care, the result of which informed the development of the CASCADE model of care. The project was funded by the EU Interreg 2 Seas programme and is due to be completed in 2021.

It aims to develop and embed a financially sustainable model of integrated dementia care in the community. Two newly built guest houses in Kent are offering people living with dementia a step up to or step down from hospital care before returning to their own homes.

This will give them the opportunity to recover in suitable supported accommodation while fully

integrated into the local communities of Dover and Rochester where the guest houses are located. Guest houses are care homes, but with a particular culture and outlook which we will outline.

Model of care The model was developed to assist care staff in maintaining and encouraging residents’ abilities and improving their physical and mental health. The overall aim is to encourage independence in the community. It is based on the idea that holistic dementia care planned around the person’s abilities, strengths and interests is best practice for enabling meaningful independent living.

Developed and co-created with people living with dementia, the model has five main elements: • person-centred care in the community • strengths-based approach • living life to the full • positive public perception • safe environment for independent living.

September/October 2020 Vol 28 No 5

A learning package has been developed for care staff who will take part in training in the CASCADE ways of working. It covers three modules including: the principles of the model; workplace learning; and person-centred leadership in dementia care. The training will be delivered to staff before residents and their families begin arriving at the demonstrator sites. Further, the n Dr Raymond Smith is research fellow, Dr Toni Wright is principal research fellow, Anne Martin is research fellow, and Professor Eleni Hatzidimitriadou is head of research and enterprise, all in the Faculty of Medicine, Health and Social Care at Canterbury Christ Church University. Comments or questions can be emailed to Toni.Wright@Canterbury.ac.uk or Anne.Martin@canterbury.ac.uk.

training materials will be made publicly available via a repository for anyone to use if they would like to learn more about the model.

How is it different?

CASCADE was founded by blending elements of best practice from care, sustainable technology, building design, training and business. It came together with the building of two brand new facilities in Kent – Harmonia Village and Harmony House.

The vision of CASCADE is to give people with dementia and their families a comfortable place they can call home, while engaging with the local community and activities they enjoy. These homes have been strategically located and specifically built in the heart of vibrant existing communities, offering potential for becoming part of those communities whose hallmarks are a commitment to equality and mutual support in which members give as well as receive (Piepzna-Samarasinha 2018).

The model is innovative in that it moves away from the traditionally Western biomedical and institutional understandings of dementia care towards a more holistic and person-centred approach.

For example, it is grounded in providing holistic, personalised care to people with dementia and their families to encourage independent living and participation in meaningful activities.

People’s strengths and abilities are utilised to ensure they are able to live life to the fullest and feel part of local communities. The overall emphasis is on maintaining the mental, emotional and physical wellbeing of people living with dementia for the duration of their stay at the home.

Our hope is that CASCADE leads more widely to an antiinstitutional approach based on a collective model.

Evaluating the model We are carrying out an evaluation to demonstrate the acceptability and financial

sustainability of the project, using both quantitative and qualitative methods. Data collection is taking place over 12 months at three timepoints and aims to answer five research questions:

PERSPECTIVES

1. What is the impact on the wellbeing of people with dementia?

At a time when we have most needed comfort and reassurance from family

By Grace Meadows and friends, those things haven’t been available to many of those living and working in care settings. What it means to be together has been sharply brought into focus. Our universal response to bridge the distance has been to use music to stay connected and keep our relationships alive. That’s the beauty of music.

2. What is the impact on the family or significant others?

3. What is the impact on staff job satisfaction, recruitment and retention?

4. What is the impact of training on the development of individual staff competence in dementia care?

5. How cost effective is the model?

Music to support and comfort

n Grace Meadows is director of Music for Dementia

Music has helped to provide comfort and reassurance, and so much more. In many cases, however, music sessions offered in person – music therapy, interactive music-making sessions or live performances – have been considered inessential or have been difficult to continue while maintaining safety guidelines. Yet, throughout the pandemic, we have shown each other just how important music is to us and the difference it makes to our lives, not least those living with dementia.

Data collection began in February 2020, with the arrival of the first guests at both Harmonia Village and Harmony House, and we expect to publish our findings in early 2021. In the meantime, updates on the project can be found on our Twitter account @CCCUCascade. n

Knowing that music therapists and musicians were unable to go into care settings, we wanted to help fill the music gap.

Central to our thinking was the importance of making the offer free, easily accessible and appropriate. This is why we launched our m4d Radio initiative. It is an internet radio station with five channels, four that play songs from specific decades and one that plays a mix from across all four attuned to the rhythm of the day. Crucially, we wanted m4d Radio to be distinct from other radio stations, which is why there are no ads and it really is all about the music.

Acknowledgments We would like to thank our funders, the EU Interreg 2 Seas programme, the CASCADE Working Group and our project partners East Kent Hospitals University NHS Foundation Trust, Emmaus Elderly Care, Flemish Expertise Centre on Dementia, HZ University of Applied Sciences, Medway Community Healthcare, Residential Care Holy Heart, The Health and Europe Centre, University of Lille 3, and ZorgSaam.

Dementia is isolating both for the person living with the condition and those caring for them. Lockdown exacerbated this and heightened many other feelings, such as anxiety, loneliness, confusion, distress and loss. With the disruption to everyday routines and restrictions on movement and contact, we have learned of the devastating impact these have had.

References Age UK (2019) Later Life in the United Kingdom 2019. London: Age UK. Piepzna-Samarasinha LL (2018) Care Work: Dreaming Disability Justice. Vancouver: Arsenal Pulp Press.

Wittenberg R, Knapp M, Hu B, Comas-Herrera A et al (2019) The costs of dementia in England.

International Journal of Geriatric Psychiatry 34(7)1095-1103.

Lockdown measures were accompanied by an alarming decline in health and wellbeing. Quality of life and opportunities to engage in daily meaningful activities significantly reduced.

And yet these things are exactly what are needed as we move into a new phase of living with Covid-19 Music has a key role to play. People will need to process their experiences to aid their recovery and music can be a powerful channel for self-expression, reflection and communicating feelings when words are too much, not enough or no longer available. Musical creativity provides not only cognitive stimulation but social, emotional, psychological and communicative stimulation, all of which help enhance and enrich quality of life.

Many have been frightened by Covid-19 and have responded tentatively to the loosening of restrictions. Music, in all its forms and richness, can and will be there to support us along the way.

To listen to m4d radio, visit www.m4dradio.com.

To find out more about Music for Dementia, how you can help make music part of care for people with dementia, and how you can be actively involved with the campaign, visit www.musicfordementia.org.uk

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 25

The voices of people with dementia, loud and clear Scottish activists pioneered the assertion of rights for people with dementia across the globe. Philly Hare (left, below) and Arlene Crockett chart this history in their new book Loud and Clear or many centuries, people with dementia have been largely undiagnosed, unseen, unvalued, ignored and disrespected – and their voices have been unheard. It is only from around the turn of this century that they have started to connect with each other and make their needs and views known directly, without the medium of (however well-intentioned) proxies.

This impetus for change initially came from a handful of remarkable individuals raising their own concerns about their rights, their place in their community and the quality of services being provided (or not provided) for them. Further progress came as those with the lived experience began to meet and work with each other – making new connections.

These connections strengthened their shared conviction that there is still hope for a kind of recovery, not recovery from dementia but recovery of quality of life lost. As one observer of these developments wrote: “After decades of silencing and discrimination, people with dementia are beginning to join forces, take action and campaign for social change” (Bartlett 2014).

In our new book Loud and Clear we chart those developments and tell the story of the activists behind

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n Philly Hare is co-director of Innovations in Dementia) and Arlene Crockett is director of evidence and influencing at Life Changes Trust

26 The Journal of Dementia Care

them – activists like Agnes Houston, Nancy McAdam, James McKillop and Ron Coleman. In the early days of the Scottish Dementia Working Group (SDWG) – from 2002 – Scotland led the way in involvement, voice and activism, not only in the UK but in the world.

Wide-ranging impact The impact of those pioneers was huge: the first Charter of Rights for People with

Dementia and their Carers; contributions to the formation of the first national dementia strategy in the world; people with dementia as research coinvestigators; standards for researchers who want to work with people with dementia; and leading a university design school.

They kick-started the creation of resources from the perspective of people with dementia and raised awareness every day in small

Key points • Loud and Clear is our new book exploring two decades of involvement, voice and activism by people with dementia in Scotland. Our aim is partly to remember and celebrate what they have done – but also, we hope, to help people who are living with dementia now, and in future, to learn from those who came before.

• This work was funded by the Life Changes Trust, which was established in 2013 to effect strategic, transformational change in Scotland for people living with dementia, unpaid carers of people with dementia, and young people who have experience of being in the care system.

• Life Changes Trust has invested in a wide range of interconnected work that supports and gives voice to people with dementia and unpaid carers.

• Loud and Clear is available for free download at https://www.lifechangestrust.org.uk/publications • There is a short film on YouTube too. Go to www.youtube.com and search “Loud and Clear – Exploring two decades of activism by people with dementia in Scotland”.

September/October 2020 Vol 28 No 5

and large ways. Further afield, countries such as Japan and Australia attribute much of their awareness of the importance of involvement to Scotland’s movement.

Learning from the work of Alzheimer Scotland in raising the profile and reach of the SDWG, the growing DEEP network in Scotland and numerous other innovative projects (many funded by the Life Changes Trust) are now adding to the richness of this tapestry with more and more people with dementia interconnecting and telling their stories.

DEEP – the UK Network of Dementia Voices – has led many groups to link up across Scotland. The groups are all very different, but they share a sense of belonging and purpose, and get involved in a wide range of projects often funded through small DEEP or Life Changes Trust grants.

DEEP Gatherings enable groups to meet together physically as often as possible.

As time goes on, many more voices are being heard, and in many different ways.

Research Involvement in research has been another key aspect of activism. Twenty years ago, people with dementia were often ignored, left out, or represented by others in research. Then researchers started to ask them for their views and began to understand how to do research better. Some people with dementia were involved in advisory groups, employed as co-researchers, or even

From left above: Agnes Houston, Ron Coleman, James McKillop and Nancy McAdam Below: The Scottish Charter of Rights and James McKillop’s invitation to a reception with Nicola Sturgeon

became fellows of research bodies. Now they are designing and leading their own research projects on their own chosen topics, for example, through the Dementia Enquirers programme.

Activists, researchers and artists have worked together to enable the voices of people with dementia to be heard loud and clear through very creative methods. Examples include poetry, fine art, film and video, photography, quiltmaking, bird sculptures, plays, banners… These creative approaches have enabled many more voices of people with dementia to be heard in Scotland.

Most people who are diagnosed these days are unaware of the history of involvement that precedes them. But stories are still told and remembered about some of the forerunners to the dementia movement and those who became key players in it,

not just people with dementia themselves but carers, academics, artists, staff, volunteers and so many others.

Activism is not easy. It brings its own costs alongside its rewards. People have to cope with tiredness, financial costs, ill-health, lack of appreciation – and sometimes criticism. But there are also many benefits, such as a strong sense of achievement and belonging.

Activism brings new relationships, confidence, skills, and meaning to life.

Achievements So, what has been achieved?

The courage and energy of the activists has inspired many individuals. Activism is helping to change both policy and practice, but there is much more work to do: stories of poor diagnosis and postdiagnosis experiences are still common. Some people feel activists have sometimes lost

the freedom to follow their own ideas and express their views. But there are now more ways for people with dementia to have their voices heard.

With the number of people living with dementia in Scotland soon to reach 100,000, it is surely time to tell – and honour – the stories of the first 20 years of involvement, voice and activism. It is essential that we record the stories of those involved and their achievements, so that the overall impact and legacy of user involvement in dementia is not lost.

As Ron Coleman from the Isle of Lewis reflects: [Earlier activists] let me know there’s so much more I can do in my life. It gives my life hope.

James McKillop, who has now been living with dementia for two decades, points out that those who know the stories can build on them, rather than risk

reinventing the wheel.

Finally, the process of remembering these stories has been an emotional one for many of the contributors.

Agnes Houston reflects: [It’s] made me sad, because I’ve thought of the people who have gone on, the people who have died and not seen the results and the fruits of all their labour… [But] it’s with great satisfaction, that, looking back, I see the fruits of all our efforts and labours…

Yes, you’ve got to believe it’s been worth it. I would say a resounding yes, yes, yes!!...

For all you people out there just newly diagnosed, please seek out peer support, other groups… and be in your driving seat, do what you want to do, whatever that may be.

Dementia is not the end, it’s only the beginning of a different journey.

References Bartlett R (2014) The emergent modes of dementia activism.

Ageing & Society 34(4) 623–44.

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 27

Self-assessment to raise standards of hospital care Jane Gilby is Admiral Nurse at Basildon Hospital, Mid and South Essex NHS Foundation Trust. She is a member of the National Dementia Action Alliance’s Dementia-Friendly Hospital Charter taskforce

How best to raise standards of hospital dementia care? As part of our hospital series, Jane Gilby says there is no better answer than selfassessment based on the Dementia-Friendly Hospital Charter he Dementia Friendly Hospital Charter sets out the expectations of people with dementia and their carers in the form of “dementia statements”, so our challenge is to translate those statements into good practice. That is the purpose of a new self-assessment audit tool I have compiled.

Comprising the Hospital Charter statements contained in the Triangle of Care self-assessment framework, the aim of our tool is to use the statements as a benchmark for staff to assess both themselves and their clinical area. They can then create an action plan that focuses on becoming dementia-friendly.

As an NHS trust that has signed up to the charter, it was important for us to have a selfassessment tool in keeping with the Royal College of Nursing’s SPACE principles, which the charter incorporates and which focus on Staffing, Partnership, Assessment, Care, Environment, Governance and Volunteering.

As updated in 2018 the Dementia Friendly Hospitals Charter provides guidelines for hospitals to work by to try and make the experience of visits better for people living with dementia (NDAA 2018). To go with it the National Dementia Action Alliance has produced a poster (NDAA 2019) that can be displayed in hospitals and lists the charter’s statements so that people with dementia and carers can see them when they visit. In this hospital, the poster is displayed in inpatient wards and on dementia information boards in A&E, outpatients and public corridors.

We were keen to build on this work. The NDAA charter taskforce meets quarterly and it was during one of the meetings we considered how to ensure hospitals that have signed up to the charter continue working towards the charter’s goals.

Since the NDAA is not a monitoring body, it falls to individual trusts to maintain standards, but the taskforce wanted to think about ways of promoting the charter and making it easier for trusts to share their own best practice achievements more widely.

The NDAA granted permission for the statements to be used in a self-assessment tool for individual wards rather than for the trust as a whole. Our intention was to give each ward “ownership” of the charter principles, developing its own action plan in a way that would be much more manageable than a trust-wide approach. We felt there was no better

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method for assessing the clinical area and its staff than to do so against these statements produced by people with dementia and carers.

Originally developed for mental health services, the Triangle of Care, the template for our tool, describes a therapeutic relationship between the person with dementia (the patient), staff member and carer that promotes safety, supports communication and sustains wellbeing. (Carers Trust 2016).

In the Triangle of Care document is a blank template for a self-assessment tool, which has a traffic light system for assessing the clinical area and service delivery. We borrowed it with the agreement of Carers Trust. In the template’s red, amber and green (RAG) rating system, as applied to our tool, “green” represents a success rate of 80%-plus against a charter statement (unless otherwise indicated) and “amber” represents 50%plus. The statements were pasted into the template just as they appear on the poster.

Implementation Our three older people’s medical wards were chosen as the pilot sites for the self-assessment tool. We arranged one-to-one meetings with the senior sisters and the charge nurse to discuss the tool and decide on a timeframe in which to complete the assessment. All agreed to do so within four weeks as they wanted to discuss the pilot with their teams.

Supporting reading materials were sent to the same senior staff, including the revised charter, the Triangle of Care document and the new selfassessment audit tool

Staff feedback When the pilot audit had been completed, we asked for staff feedback on the experience. They liked the fact that the NDAA statements were the basis of the tool and they had a sense of ownership over the action plan that resulted. It felt “personal” to the ward and there was a corresponding feeling of achievement and a desire to carry on towards the goal of being dementia-friendly.

Staff felt the tool was easy to use from the start, though one person mentioned that the statements were subjective and that they found it difficult to measure them against the RAG rating. One respondent commented that the statements needed to change, but overall staff said completing

the tool made them think constructively about how they delivered care.

Training was one aspect of our work rated against the RAG system during the pilot exercise.

We looked at dementia training at tiers one, two and three, safeguarding training, and training relating to the Mental Capacity Act and the Malnutrition Universal Screening Tool, examining the compliance and accessibility of training records.

Among the other information sources used regularly on the wards that were also given RAG ratings were: audits such as those covering “do not resuscitate” decisions, nutrition and services; monthly feedback from carers’ surveys; ward meeting minutes; directorate and ward newsletters; alerts confirming dementia diagnoses on the Electronic Patient Records System; and an end of life questionnaire.

Other evidence we considered as part of the exercise were spot checks on compliance with procedures for ensuring professional awareness, such as placement of “butterfly magnets” above beds to denote a dementia diagnosis and provision of “This is me” documentation (Alzheimer’s Society 2017) setting out biographical details of patients with dementia

Outcomes Our pilot exercise was a success and the three older people’s medical wards involved all produced their own dementia care action plans as a result. All three wards rated “green” on the following dementia statements: partnership in care, flexible visiting, respecting the rights of patients, assistance with eating and drinking, expressing needs, and advance care planning.

While none of the wards rated “red” for any of the statements, the exercise did reveal three areas to focus on: training, carer/family involvement, and environment.

Ward action plans highlighted themes in common, including implementation of the following initiatives:

• John’s Campaign, which supports the right of carers and family to stay with patients with dementia in hospital • “Protected mealtimes” where eating and drinking are the focus, in a clean, quiet and safe environment, while allowing staff to provide assistance and encouragement as non-essential interruptions are limited.

Staff liked the self-assessment tool because it helped them focus on what was expected by people with dementia during a stay in hospital and provided them with evidence of the care they delivered, as well as a plan for continued best practice in dementia care.

The action plans will provide evidence for the wards of their ongoing work to become dementiafriendly and can be referred to when an NHS trust signs up or renews its commitment to the Hospital Charter. The plans will also make a valuable contribution to future National Dementia Audits and Care Quality Commission inspections.

Next steps Following our pilot exercise, we propose to roll out the self-assessment tool to other older people’s wards across the NHS trust. Action plans will be filed electronically as a constant point of reference and a yearly audit of performance against the plans will be completed during Alzheimer’s Society’s Dementia Action Week.

Wards will be prompted to review their performance against the plans a couple of weeks beforehand.

Action plans will also be part of the agenda in the trust’s regular high- level meetings on dementia care. That they received the accolade of being included in the trust’s end of year quality report is a further mark of their success. We believe that we have shown how the Hospital Charter statements can be integrated into practice improvement on our wards and make a genuine difference to the experience of patients with dementia.

You can find out more about signing your hospital up to the Hospital Charter at www.smartsurvey.co.uk/s/DFHospital Charter2018n

Poster showing the NDAA’s Dementia Friendly Hospitals Charter statements

References Alzheimer’s Society (2017) This is me (2nd edition).

London: Alzheimer’s Society.

Carers Trust (2016) Triangle of Care - Carers Included: A Guide to Best Practice for Dementia Care.

London: Carers Trust.

National Dementia Action Alliance (2018) Dementia Friendly Hospital Charter.

London: NDAA National Dementia Action Alliance (2019) What to expect from us during a stay in hospital. London: NDAA.

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 29

Reducing inappropriate poly An older adult may take several medicines and heighten their risk of side effects.

Aiysha Saleemi, Caroline Chill, Mandeep Butt and Aileen Jackson report on a care home project to reduce the use of multiple medications Aiysha Saleemi is a pharmacist and project manager, Caroline Chill is clinical director for the Healthy Ageing Programme, Mandeep Butt is lead pharmacist and Aileen Jackson is head of mental health, all at the Health Innovation Network

t has gradually become clear in recent years that some older adults on multiple medications may be taking medicines that are no longer providing the desired health benefits and could be causing harm.

The use of multiple medicines is often necessary for those with several health conditions, but what is known as “inappropriate polypharmacy” arises when some of those medicines are not needed.

In 2017, the World Health Organisation announced its global patient safety challenge “Medication Without Harm”, which aims to reduce severe, avoidable, medication-related harm by 50% over five years. As part of this challenge, many organisations across England are reviewing the way medicines are used.

A “Reducing Inappropriate Polypharmacy” project, run by the Health Innovation Network (HIN), was conducted in collaboration with care homes, where there are large numbers of people over 85 years old who have dementia, frailty and comorbidities, use multiple medications and are at greater than average risk of side effects and drug interactions. Evidence suggests 82% of this older age group either have or will develop more than one long-term condition (Barnett et al 2012).

As the Academic Health Science Network (AHSN) for south London, the HIN recruited four

I

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care homes to the project, which ran in 2018/19, after engaging with local care home forums and clinical commissioning group/local authority care home leads. One care home chose to improve the use of non-pharmacological options and the other three worked towards reducing anticholinergic medicines in care homes (ReACH).

Reducing anticholinergics Anticholinergics are a group of medicines causing side effects such as dry mouth, constipation, dizziness and blurred vision. They directly block the beneficial effects of dementia medicines, causing confusion and compromising cognition in people living with dementia.

Examples of conditions for which anticholinergics may be used in older adults include incontinence (e.g. tolterodine) and depression (e.g. paroxetine). It is important to note that non-anticholinergic medicines that do not have the associated effects may be available instead to treat these conditions.

We invited care home staff, residents and their relatives to attend a presentation on the potential risks of polypharmacy and the side effects of anticholinergics. Residents and relatives interested in exploring the topic of polypharmacy further were then invited to attend a focus group discussion.

pharmacy in care homes GPs or pharmacists should regularly review the need for medicines because of their potential harmful effects, particularly for people with dementia One of the messages we were keen to make clear was that GPs or pharmacists should regularly review the need for these medicines because of their potential harmful effects, particularly when they are taken by people with dementia. Where they are no longer providing the desired benefits, they should be stopped.

What we achieved The potential role of clinical pharmacists in advising care homes has been acknowledged in the NHS Long Term Plan, which contains a strategy for enhanced health in care homes. Part of it is to provide multidisciplinary team support from the NHS, including access to clinical pharmacists.

In our project we examined 100 medication administration records for residents with dementia, from which we highlighted 23 medications with high anticholinergic activity for review. These had been prescribed for 20 of the residents.

In the end, 21 medicines (taken by 19 people) were reviewed by a GP. Of these, 11 medicines were stopped, two residents were switched to medicines with less anticholinergic activity or none at all, and eight medicines were unchanged due to clinical need.

We created a set of resources to raise awareness among care home staff of anticholinergic medicines and inappropriate polypharmacy, including:

• a poster detailing the side effects of anticholinergic medicines • a poster encouraging regular medication reviews • a patient-friendly leaflet explaining the potential risks of polypharmacy.

Our resources are endorsed by “Me and My Medicines”, a patient-led campaign to improve communication around medicines, and the Medicines Support Campaign led by the National Institute for Health and Care Excellence (NICE).

They can be used in any care setting, such as care homes, GP surgeries, community pharmacies and out-patient clinics in hospitals.

Non-pharmacological approaches In the care home improving non-pharmacological interventions, participating residents were given more dietary fibre in an attempt to reduce the need for laxatives. Laxative medicines had been highlighted by the care home clinical lead as possibly being over-used.

In consequence, three residents cut down on laxatives by 80-90% and one resident stopped altogether, demonstrating that dietary adjustments can lessen the need for pharmacological interventions. Non-pharmacological options could similarly reduce reliance on medicines for other conditions, such as stress and distress behaviours in people with dementia. For example, music, massage and touch therapy have been shown to be more efficacious than commonly used pharmacological therapies (Watt et al 2019).

NICE recommends offering psychosocial and environmental interventions in response to these behaviours and says that antipsychotics should only be offered to those who are at risk of harming themselves or others, or who are experiencing agitation, hallucinations or delusions that are causing them severe distress (NICE 2018).

However, while the benefits of nonpharmacological options have evidently been widely recognised, more needs to be done to support the implementation of these interventions.

References Barnett K, Mercer SW, Norbury M, Watt G et al (2012) Research paper.

Epidemiology of multimorbidity and implications for health care, research and medical education: a cross-sectional study.

Lancet 380(9836) 37-43.

Watt JA, Goodarzi Z, Veroniki AA, Nincic V et al (2019) Comparative efficacy of interventions for aggressive and agitated behaviors in dementia: a systematic review and network metaanalysis. Annals of Internal Medicine 171(9) 633–42.

National Institute for Health and Care Excellence (2018) Dementia: assessment, management and support for people living with dementia and their carers (NG97). London: NICE.

Lessons learned Inappropriate polypharmacy is a complex problem that must be resolved with a multi-faceted approach. Our project raised awareness of the potential risks of polypharmacy, reduced the use of medicines with high anticholinergic activity and increased dietary fibre to cut down on laxatives. By targeting a specific group of medicines, we showed one way to make a significant impact on the problem. Resources created by the project are available to all care homes as a reminder to staff – and a basis for training them – to ensure that anticholinergics are reviewed regularly and only continued if absolutely necessary.

In 2019, the English Deprescribing Network (EDeN) was established to find and implement ways to reduce inappropriate polypharmacy, learning from colleagues around the world to ensure that people receive the right medicines at the right time. The Health Innovation Network in south London, like the other 14 AHSNs across England, has the same aim.

Sharing learning and building links between the EDeN and AHSNs will be vital. By making inroads both on inappropriate polypharmacy and medication administration errors in care homes, we will be able to achieve better care for people taking multiple medicines.

Download the free resources and implementation guide from the HIN website at https://healthinnovationnetwork.com. n

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A valuable specialist role to support end of life care How can staff be supported to deliver better end of life care in community settings?

Marie Poole and colleagues describe how a new Dementia Nurse Specialist (DNS) intervention was implemented and tested in primary care, arguing that the role could meet the requirements of recommended best practice linical guidelines on dementia care emphasise that palliative care in dementia should be flexible and tailored to the needs of individuals (NICE 2017, 2018), but often leave open the question of how best to implement such care in practice.

Our Supporting Excellence in End of Life Care (SEED) research programme (Robinson et al 2015) developed an intervention designed to fill this gap, involving Dementia Nurse Specialists (DNS) whose role was to support primary and community care professionals to deliver better care towards the end of life.

It began with an extensive review of previous studies to summarise key findings and find the best ways of measuring this care, i.e. outcomes or quality markers (Amador et al 2016, Amador et al 2019). We explored the views of people with dementia and family carers for their preferences for end of life care (Hill et al 2017) and then we undertook a large, national qualitative study to define good practice and identify possible examples of it for more detailed study (Lee et al 2017, Poole et al 2018). In addition, we sought an understanding of how end of life care for people with dementia was commissioned and organised (Gotts et al 2016) and another part of the research explored more general views on the value of the DNS role to improve end of life care (Bhattarai et al 2020).

We used our findings to develop the DNS intervention and then tested it in primary care settings. The aim was to assist with seven crucial components of care, which our research had shown were key to the provision of good quality end of life care in dementia.

These components were: timely planning discussions, recognition of end of life and provision of supportive care, co-ordination of care, effective working relationships with primary care,

C

Key points • A research project called Supporting Excellence in End of Life Care (SEED) led to the development of a Dementia Nurse Specialist (DNS) intervention • Each DNS is placed in primary care to support professionals in the community to provide better care towards the end of life • Our research showed that the DNS had to focus on seven key aspects of care to ensure good quality end of life care in dementia, including timely planning discussions, care coordination and valuing staff.

• We successfully tested the DNS intervention in two separate GP practices; the majority of participants felt there was a definite need for this new specialist community role.

• Core components of the intervention continued to be used by at least one DNS after our pilot had finished; this enabled more timely person-centred palliative care at a time of crisis, e.g. the Covid-19 pandemic.

• The DNS role meets the requirements of the named health/social care coordinator recommended by the National Institute for Health and Care Excellence (NICE) for every person with dementia from the point of diagnosis to the end of life. managing hospitalisation, continuing care after death, and valuing staff and ongoing learning (Bamford et al 2018). Here, we describe how we successfully implemented our intervention and report on whether participants found it an acceptable, feasible and useful care model.

Implementation and testing In this pilot study, we employed two DNS in two GP practices in different areas of the north-east of England; one in

32 The Journal of Dementia Care September/October 2020 Vol 28 No 5

Marie Poole is research associate, Claire Bamford is senior research associate, Emma McLellan is research assistant and Dorothy Coe is research associate, all at Newcastle University; Julie Young is an advanced nurse practitioner at Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Karen Harrison Dening is head of research & publications for Dementia UK , and Louise Robinson is regius professor of ageing, an academic GP and professor of primary care and ageing at Newcastle University, on behalf of the SEED team. a small, rural town in Northumberland and the other in an urban practice in a large town in Tyne and Wear. Both nurses had access to a toolkit of researchbased educational resources.

A local specialist supervisory team, along with the research team, provided training and ongoing support and mentoring for the DNS. We developed a range of practical activities for them which focused on both directly supporting people with dementia and their families, and on mentoring and supporting existing staff and services, including their GP practices and local care homes.

Data collection on how the intervention worked in practice relied on qualitative research methods (Moore et al 2015). We shadowed the DNS as they undertook their daily duties and made detailed observations, and we interviewed and held informal discussions with people with dementia, their families and a range of professionals from the GP practice and local services like care homes.

Our observations captured the essence of the daily activities and interactions of the DNS, such as working with people

Dementia nurse specialist Julie Young with Bill, a SEED participant

with dementia and carers in their own homes, delivering training to health and social care professionals, attending multidisciplinary meetings at their GP practice and in other services, and intervention supervision meetings at Newcastle University, which ran the programme.

In the interviews we sought people’s perspectives on the support delivered and received, whether this support was useful and acceptable, how the DNS compared with existing services, who might benefit most from their support, and what could be changed. We were then able to integrate data from multiple sources into vignettes that show the breadth and depth of work carried out by both DNS and how they translated the seven key aspects of care into clinical practice.

place in total with the following participant groups: six people living with dementia; 16 family carers; both DNS on three occasions each; four members of the intervention supervisory team; 13 GP practice staff and 20 health and social care professionals who worked in care homes, community mental health teams, palliative care teams, sheltered housing and hospices. The interviews explored key questions regarding implementation of the intervention (see box below), so we will consider the answers we got to these questions in turn.

Right location?

All participant groups considered a GP practice as an appropriate base for the DNS as it supported crucial liaison and co-ordination with other services.

Benefits for people with dementia and

What did we find?

We made observations on 23 occasions, looking at a broad range of tasks in a variety of settings.

For example, we observed each DNS working with other practitioners in GP practices, care homes and other services such as hospitals; working with people with dementia and their families in their own homes; working with people with dementia and staff in care homes; and delivering training in care homes; as well as observing intervention supervision sessions provided by the research team.

Fifty-five interviews (some joint) took

Interview questions • Is primary care the right location for the intervention?

• Are the seven components relevant to real world practice?

• Does the intervention work at individual and systems levels?

• What professional experience and training is needed for the DNS role?

• How does the intervention fit with existing services?

their family carers included easy access to the intervention; benefits for the DNS were regular face-to-face contact with GPs, access to patient records, and established links to other services. A small number of healthcare professionals suggested alternative primary care settings and teams to host the DNS role, e.g. district nurses or community palliative care teams.

As one interviewee put it: Many patients go through long periods of the dementia illness, without being in touch with secondary care services. So, from that point alone it makes sense to be embedded with primary care, one of the core roles is developing links with other parts of the wider system (consultant old age psychiatrist 5).

DNS confidence in their specialist knowledge and ability to develop their role also influenced how quickly they became successfully embedded in the GP practice. Being part of the practice team also helped. If the DNS had regular contact with the dementia lead GP and attended key team meetings, for example, this facilitated their integration into the service.

Relevance to practice?

DNS delivered interventions relating to the seven components of care to participants living at home and in care homes. It involved working with patients and family carers individually and ‰

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The Journal of Dementia Care 33

Experience and training?

Case study: Mr Thompson and his family Mr Thompson lives with his wife, supported by their daughter who lives locally.

Mrs Thompson is reluctant to accept help but her daughter thinks her mum needs extra support to cope.

The DNS completes a comprehensive annual dementia review with the couple, which highlights unmet support needs around continence and coping. Mrs Thompson confides her own difficulties with emotional wellbeing. She is persuaded by the DNS to accept support she previously refused.

The couple are referred separately to different mental health services in primary and secondary care to meet their individual psychological needs. The DNS also highlights concerns around safeguarding to their GP. The couple engage with mental health services, but Mr Thompson suddenly becomes unwell and is admitted to hospital with an infection.

During admission, he becomes increasingly frail and the DNS discusses his health with the hospital multidisciplinary team. Mrs Thompson is adamant that she wants her husband to come home when he can, although her daughter feels her mother couldn’t cope.

The DNS asks Mrs Thompson to consider a placement in a local care home to help her husband to recuperate, while also visiting Mr Thompson in hospital to keep the hospital team and family informed of each other’s wishes and preferences around his best care.

Mr Thompson further deteriorates. He is moved to a side ward but dies soon afterwards. Both his wife and daughter are visited by the DNS a short time later to give them further support. They feel that he died peacefully and comfortably.

The DNS refers Mrs Thompson for bereavement support.

‰working across the system of local services: coordinating care, working effectively with primary care and timely planning discussions were most commonly reported as particularly acceptable in interviews with people with dementia and carers. By addressing these three components in particular, things like managing hospitalisation and continuity of care also came into view.

Continuity of care was considered a key benefit of the DNS role, often contrasting with previous experience: Well you don’t have to start from scratch. I mean obviously they’ve got notes but you feel like they know you. You don’t feel like it’s a stranger and you’re having to say, “Well my dad doesn’t know this,” because she knows (family carer 3014).

It’s continuing support. We see her and she makes different recommendations or different suggestions, it’s very valuable (family carer 1035).

Does the intervention work?

Work with individuals focused on identifying unmet need and providing tailored interventions; most families viewed the frequency and duration of

34 The Journal of Dementia Care

visits as appropriate. Stakeholders agreed that a key benefit of the DNS was their ability to provide proactive support, coupled with a recognition that existing services were often only available to respond to crises. Patients had often been discharged from existing services once they were “stable” because resources were lacking: She’s actually reviewed, quite comprehensively, a lot of the patients and given them a better review than they would probably have had from a general practice perspective (practice manager 3.1).

DNS were able to implement preventative measures to avoid crises (see “Mr Thompson” case study above) and initiate systemic change by introducing innovative solutions for GP practices and local services more widely.

Examples of these system-level changes are a template for annual dementia reviews adopted by both GP practices, practice staff valuing this more in-depth and comprehensive approach to the annual review, and a flowchart to facilitate co-production of emergency healthcare planning documents between the GP and care home staff.

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Participants expressed mixed views on the key qualifications and training required to best fulfil the DNS role. Both DNS were highly experienced: one was a specialist in mental health and the other in palliative care. Some professionals considered a nursing background essential for effective delivery of the role, while family carers and care home staff particularly valued the clinical knowledge brought by the nurses. Some family carers described how both they and the person with dementia were more likely to accept help and support from a clinician: I think it’s quite good that she has got the nursing background because when we were talking about him having problems with his incontinence, he would go, “There is nothing wrong.” I said, “Well actually, DNS2 is a nurse.” I think when I said, “She’s actually from the doctors. She’s medical,” then he’ll go, “Oh.” I think he feels a bit better then (family carer 3014).

Others stressed the significance of knowledge and skills in managing the physical and psychological needs of people with dementia and carers.

Positive personal attributes such as reliability, tenacity and the ability to inspire confidence and put people with dementia and their families at ease were also highlighted. These qualities appeared to be the desired qualifications for the DNS role, strengthened by ongoing training and support to address knowledge gaps and promote continuous learning and development.

How does it fit?

The majority of stakeholders regarded the DNS role as complementary to existing services, although, in one case, a tension arose around the provision of training in end of life care. This occurred when a care home declined the offer of dementia-specific training from a local hospice, which was seeking to expand its services, on the grounds that the DNS had already provided training as part of comfort care planning (Young et al 2017).

But this was an isolated instance.

Most professionals and carers appreciated their inclusion as part of the multidisciplinary care team with any existing overlap considered as beneficial rather than problematic: Undoubtedly, there’s overlap with our roles but very much, they’re complementary. We find that throughout palliative care, that there’s quite a lot of blurring of roles, but it is about teamwork. (healthcare professional 5S1)

Professionals perceived similarities between the role of Admiral Nurses and the DNS; however, an important difference was the location and integration of the DNS in the primary care team, which was considered a key benefit by all stakeholders. In addition, Admiral Nurses were not universally available to people with dementia and carers; some participants perceived this service as primarily focused on family carers and less on the needs of people with dementia.

Both carers and professionals identified post-diagnostic dementia support in general as a significant service gap and considered the DNS well placed to meet this need and provide continuity of care as the condition progressed: My experience of the GPs basically, “Here’s the diagnosis and see you.” That’s it, because there’s no medication and you don’t get offered anything at all, that was it (family carer 1058F).

Conclusions While updated National Institute for Health and Care Excellence dementia care guidelines (NICE 2018) show a considerable increase in dementia research in the last decade, there have been very few UK studies focused on improving end of life care.

Our findings demonstrate that a new dementia care professional role, the DNS, developed from research and aimed at assisting primary and community care staff to provide better end of life care, is acceptable, feasible and beneficial to patients, their families and the professionals looking after them.

Locating the DNS in the primary care team was advantageous; a skilled, knowledgeable and empathetic practitioner can fulfil this role; and core activities included care co-ordination and integration with existing services, timely planning discussions and mentoring and supporting generalist staff.

We did, however, face challenges both locally and nationally during our research. Nationally, GPs had become commissioners as well as providers of services when clinical commissioning groups were introduced, which led to difficulties recruiting GPs to our project.

Also significant locally was a sudden shift to primary care of responsibility for providing post-diagnostic support. Since memory clinics then became a “one stop shop” diagnostic service, specialist postdiagnostic care for the majority of newly diagnosed patients was lost.

Consequently, our participants tended to comment on the lack of post-

Our findings show that a new dementia care professional role, the DNS, is acceptable, feasible and beneficial to patients, families and professionals diagnostic care generally, not just towards the end of life. In the context of this research, both GP practices faced significant structural and resource challenges, which affected their ability to engage with the intervention. However, an interested and proactive dementia lead in one of the practices supported positive engagement.

Since our study was small and limited to one region, further research is required in other regions and settings. But we believe our intervention could meet the requirements of a new role, recommended by NICE (2018), that all people with dementia should have a named care coordinator from the point of diagnosis through to the end of life.

Named care coordinators would be responsible for assessments, care planning discussions and care coordination between services (Bamford et al 2018, NICE 2018), which were among the chief responsibilities of both our DNS. Not only did the DNS build better quality end of life care during the pilot project, their skills have since been helpful to staff in other settings during the Covid-19 pandemic. One of the DNS who has moved back to working with distress behaviours, has been supporting a hospital ward for patients with severe dementia, where nurses had felt unable to provide palliative care. Using her prior DNS experience, she has helped nurses to adapt to providing palliative care by putting the SEED components of care firmly on the agenda.

Acknowledgements We are very grateful to all of the GP practices, community services, patients and carers who took part.

This study/project is funded by the National Institute for Health Research (NIHR) Programme Grant for Applied Research scheme (SEED programme RPPG-0611-20005). The views expressed are those of the authors and not necessarily

those of the NIHR or the Department of Health and Social Care. We would like to thank Northumbria Healthcare NHS Foundation Trust for study sponsorship and are also grateful to the staff on Woodhorn Ward at St George’s Hospital, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust. n References Amador S, Goodman C, Robinson L, Sampson E (2016) UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey. BMJ Supportive and Palliative Care 8(4).

Amador S, Sampson EL, Goodman C, Robinson L (2019) A systematic review and critical appraisal of quality indicators to assess optimal palliative care for older people with dementia.

Palliative Medicine 33(4) 415-429.

Bamford C, Lee R, McLellan E, Poole M et al (2018) What enables good end of life care for people with dementia? A multi-method qualitative study with key stakeholders. BMC Geriatrics 18(1) 302.

Bhattarai N, Mason H, Kernohan A, Poole M et al (2020) The value of dementia care towards the end of life‐A contingent valuation study.

International Journal of Geriatric Psychiatry 35(5) 489-497.

Gotts ZM, Baur N, McLellan E, Goodman C et al (2016) Commissioning care for people with dementia at the end of life: a mixed methods study, BMJ Open 6(12) e013554.

Hill SR, Mason H, Poole M, Vale L, Robinson L and on behalf of the SEED team (2017) What is important at the end of life for people with dementia? The views of people with dementia and their carers. International Journal of Geriatric Psychiatry 32(9) 1037-1045.

Lee RP, Bamford C, Poole M, McLellan E et al (2017) End of life care for people with dementia: The views of health professionals, social care service managers and frontline staff on key requirements for good practice. PLOS ONE 12(6) 1-19.

Macdonald A, Neves S, McLellan E, Poole M et al (2018) End of life care: resources to strengthen support. Journal of Dementia Care 26(1) 28-31.

Moore G, Audrey S, Barker M, Bond L et al (2015) Process evaluation of complex interventions: UK Medical Research Council (MRC) guidance. London: MRC. National Institute for Health and Care Excellence (2017) Care of dying adults in the last days of life (Quality Standard QS144). London: NICE. National Institute for Health and Care Excellence (2018) Dementia - assessment, management and support for people living with dementia and their carers. London: NICE. Poole M, Bamford C, McLellan E, Lee RP et al (2018) End-of-life care: A qualitative study comparing the views of people with dementia and family carers. Palliative Medicine 32(3) 631642.

Robinson L, Mattison A and SEED Research Team (2015) SEED: Supporting Excellence in End of Life Care. Newcastle University, available at https://research.ncl.ac.uk/seed/.

Young J, Gilbertson S, Reid J (2017) Comfort care plans: a collaborative project. Journal of Dementia Care 25(6) 18-20.

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How dementia affects sight and visual processing Visual impairment is common among people with dementia and may go untreated even when it is treatable. In the first of two articles on the impact of dementia on eyesight, Marianne Piano considers treatable sight loss and visual processing pathways in the brain ementia can affect our sight and the way we see things, which can have a direct impact on quality of life.

Problems with vision are challenging to articulate to care professionals so that people living with dementia can experience unique difficulties when trying to cope with a sight problem (Bowen et al 2015).

From correct usage of spectacles (Bowen et al 2016), to visual hallucinations (Ballard et al 1997), to profound deficits in visual perception (Crutch et al 2012), dementia can interact with vision in a variety of ways that in some cases are still not fully understood. But knowledge of the visual difficulties that people with dementia can face, and how to adapt care to circumnavigate these, can be highly useful for dementia care professionals in order to tailor best care.

In this two-part series of articles, I will explore the ways in which dementia can affect eyesight and give some helpful tips to professionals. Here, in part one, I will discuss how people with dementia are at increased risk of treatable sight loss and how dementia can interfere with the processing of visual information by the brain.

D

Treatable sight loss Sight loss is a prevalent co-morbidity for people living with dementia because of age-related eye disease (Bowen et al 2016).

Epidemiological studies and literature reviews suggest linkages between risk of cognitive decline and sensory loss such as vision (Rogers & Langa 2010, Nael et al 2019) or hearing impairment (Loughrey et al 2018, Livingston et al 2017)). These findings emphasise the importance of detection and, where possible, treatment of causes of sensory loss to reduce these risks. Sight problems are a wellestablished risk factor for falls (Lord & Dayhew 2001), so maximising eyesight is an important consideration as part of routine dementia care.

36 The Journal of Dementia Care

A recent large scale study shows treatable visual impairment is prevalent among people with dementia (Bowen et al 2016), more so in care settings than in those living at home. Cataracts and incorrect or outdated spectacle prescriptions, in particular, were common and remediable causes of sight loss. Awareness of entitlement to a free eye test at home was limited.

Figures suggest that up to 250,000 people could have both dementia and sight loss across the UK (Royal National Institute of the Blind 2018). This poses major challenges to care, given the impact on quality of life arising from consequences such as fewer social interactions, feelings of isolation, impaired facial recognition and difficulties with activities of daily living (McKeefry & Bartlett 2010). All are possible causes of cognitive decline (Rogers & Langa 2010, Nael et al 2019).

There is a growing body of evidence that sight loss interventions, such as cataract surgery and injections for agerelated macular degeneration, are of immense benefit to people with dementia (Maharani et al 2018), although not in all instances (Jefferis et al 2015).

But there is still considerable variation in practice (Jefferis et al 2014, Bunn et al 2016) and worrying evidence suggests that people with dementia may be less likely than average to access sight-saving treatments (Sommerlad et al 2019, Goldacre et al 2015) unless they are appropriately supported to mitigate the difficulties they experience engaging with treatment (Read et al 2018).

There is still no NHS “dementia eyecare pathway” (Bunn et al 2016), so raising awareness among care professionals is vital, as is emphasising the role of a routine test in detecting sight loss to trigger an intervention.

Not all causes of visual difficulties in dementia are so easily remedied, however, and it is necessary to know

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Marianne Piano is a clinical vision research fellow in the Department of Optometry and Vision Sciences, University of Melbourne, and the National Vision Research Institute, Australian College of Optometry about other, more fundamental ways in which dementia can compromise vision.

It can help care professionals tailor the support they provide.

Brain processing A brief and simple crash course in the visual pathway is required to understand some of the other visual problems that people living with dementia can experience, often in the presence of good eye health. After neural signals from the retina have travelled the length of the brain to reach the visual cortex at the back, specialised cells there will activate in response to the different types of visual information contained in the signal. Lightness, contrast, orientation, shape, 3D, colour and movement information can all be extracted this way, all essential for the brain to make sense of the world as seen.

These different types of visual information are then directed into two further processing streams, known as the ventral and dorsal streams, which terminate in different parts of the brain (see figure).

The ventral stream, known as the “what” pathway, uses visual information to assist with recognition and identification of objects, faces and words.

It terminates in the temporal lobe. The dorsal stream, known as the “where” pathway, uses visual information to help with spatial awareness, navigation and the physical location of things in the visual world. It terminates in the parietal lobe.

Both of these visual processing pathways can be affected in many types

Diagram to show the dorsal (“where”) and ventral (“what”) streams of visual processing pathways

of dementia (Deng et al 2016). Damage to the “what” pathway contributes to the well-documented object and face recognition deficits that can occur in dementia. Visuospatial skills, on the other hand, can be impaired (Pal et al 2016) due to parietal lobe damage affecting visual information processed by the “where” pathway.

Damage to the “where” pathway leads to difficulties with object identification and location among clutter, orientation of limbs and body within visual space, and navigating even familiar environments.

Similarly, complex visual images such as dense patterns, partial reflections or busy rooms can be challenging to process and make sense of, causing anxiety.

Key points • Treatable sight loss (primarily cataracts, outdated spectacle prescriptions) is more common than in the general population of older adults without dementia, particularly in care settings. People with dementia are less likely to access sight-saving treatments without appropriate support to engage.

• Damage to the “where” stream in the visual pathway can significantly affect visuospatial skills, creating difficulties with depth perception, perceiving movement direction, locating objects among clutter, orienting limbs and body in visual space, and navigating even familiar environments.

• Complex visual images (e.g. dense patterns, partial reflections or busy rooms) can be challenging to make sense of if the “where” stream is damaged, causing anxiety.

Some types of visual hallucinations could potentially arise.

• Damage to the “what” stream in the visual pathway contributes to the well-established object and facial identification difficulties that can occur in some types of dementia.

Visual hallucinations of objects and people in some types of dementia could potentially arise from this stream.

• Awareness of what is going on in peripheral vision can gradually decrease (“tunnel vision”). This can result from a genuine loss of peripheral vision or from increased difficulty in directing visual attention away from the central field of view.

• Previous vascular injury such as a stroke can cause lasting impacts upon vision that may be completely independent of dementia, including acute sight loss and eye movement problems causing double vision.

Movement perception can also be impaired, in particular the perception of “optic flow” (Kavcic et al 2011), namely movement of things past you while you are also moving, e.g. going up an escalator, being in a car, walking along busy pavements.

Posterior cortical atrophy (PCA) can cause profound difficulties (Ball 2018) because deterioration of the visual cortex and its connections at the back of the brain renders information entering the dorsal and ventral streams incomplete (Crutch et al 2012). For example, a person with PCA may see someone’s hand entering their line of sight but be completely unable to locate it in physical space to touch it (optic ataxia). The visual information to identify it as a moving hand exists (the “what”), but information about where the hand is, in order to interact with it, is missing (Migliaccio et al 2012).

A small number of studies have suggested that people with Alzheimer’s disease may struggle with judging distances. This is thought to relate to parietal lobe damage or atrophy undermining 3D processing in the dorsal stream. Poor depth perception can increase risk of falls (Lord & Dayhew 2001) by affecting walking gait and ability to negotiate obstacles (Buckley et al 2010), making this an important aspect of functional vision to monitor.

More research is needed because it is not known how common depth ‰

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The Journal of Dementia Care 37

‰ perception problems are or whether there is further deterioration and therefore increasing falls risk as dementia progresses. A complicating factor is that someone may struggle to judge distances for another reason: they may be unable to coordinate their eyes properly, the risk of which increases with age (Leat et al 2013).

Such problems can be identified through the routine NHS sight test and treated with a simple, inexpensive modification to the spectacle lens.

Disruption to both processing streams may give rise to the visual hallucinations that can occur in Lewy body dementia and Alzheimer’s disease. Research (Santhouse et al 2000) profiling visual hallucinations secondary to sight loss (Charles Bonnet Syndrome), which can be similar in nature to hallucinations in dementia (Collerton et al 2012), suggests the type of hallucination may indicate which visual processing stream is affected.

Another phenomenon is the “tunnel vision” effect where a person with dementia becomes progressively less aware of what is going on in their peripheral vision. In some cases, this is a genuine loss of peripheral vision (Armstrong 1996), but more often arises as it becomes harder to direct attention to the periphery. This occurs in normal ageing but is more pronounced in dementia (Duchek et al 1998).

Lastly, for vascular dementia, it should be recognised that the pathway from the eyes to the visual cortex, and the “what” and “where” processing pathways, cover many areas of the brain which can all be affected. Even the way we move our eyes is largely controlled from the brain stem and can be compromised.

Furthermore, previous vascular injury such as a stroke can have a lasting effect on vision that may be completely independent of dementia, including acute sight loss, eye movement problems causing double vision, or alterations to the visual field that may be accompanied

by Charles Bonnet syndrome hallucinations, as well as visual processing difficulties of the kind already described (Rowe 2017).

Conclusion Much of the research literature considers fundamentals such as letter chart vision and ability to see in dimmer lighting. But more attention should be paid to the visual processing difficulties experienced by people living with dementia, and whether these change in nature or severity with disease progression. There should be robust and dementia-friendly tests of visual processing, and highquality imaging data.

38 The Journal of Dementia Care

By such means a profile of these problems can be created and care can be tailored to accommodate them. In the second article of this series, I will offer some helpful hints and workarounds for care professionals working with people with dementia and sight loss. n References Armstrong RA (1996) Visual field defects in Alzheimer’s disease patients may reflect differential pathology in the primary visual cortex.

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Ball S (2018) ‘Do I see what you see?’ A film about dementia, disconnection and seeing the world differently. London: Created Out of Mind.

Ballard C, Mckeith I, Harrison R, O’Brien J et al (1997) A detailed phenomenological comparison of complex visual hallucinations in dementia with Lewy bodies and Alzheimer’s disease.

International Psychogeriatrics 9(4) 381-388.

Bowen M, Buchanan S, Maskell S, Pickett J et al (2015) The VIDEM summit: Developing patient, carer, and clinician driven research priorities for concurrent visual impairment and dementia.

Alzheimer’s & Dementia 11(7) 892-898.

Bowen M, Edgar DF, Hancock B, Haque S et al (2016) The Prevalence Of Visual Impairment in People with Dementia (the PrOVIDe study): a cross-sectional study of people aged 60–89 years with dementia andqualitative exploration of individual, carer and professional perspectives.

Health Services & Delivery Research 4(21).

Buckley JG, Panesar GK, Maclellan MJ, Pacey IE, Barrett BT (2010) Changes to Control of Adaptive Gait in Individuals with Long-standing Reduced Stereoacuity. Investigative Ophthalmology & Visual Science 51(5) 24872495.

Bunn F, Burn A-M, Goodman C, Robinson L et al (2016) Comorbidity and dementia: a mixed method study on improving healthcare for people with dementia (CoDem). Health Services & Delivery Research 4(8).

Collerton D, Mosimann UP, Archibald N (2012) Disorders of visual perception in Parkinson’s disease and other Lewy body disorders, in Psychiatry of Parkinson’s Disease (eds) Ebmeier KP, O’Brien JT, Taylor J-P. Switzerland: Karger Publishers.

Crutch SJ, Lehmann M, Schott JM, Rabinovici GD et al (2012) Posterior cortical atrophy. Lancet Neurology 11 (2) 170-8.

Deng Y, Shi L, Lei Y, Liang P et al (2016) Mapping the “What” and “Where” Visual Cortices and Their Atrophy in Alzheimer’s Disease: Combined Activation Likelihood Estimation with Voxel-Based Morphometry.

Frontiers in Human Neuroscience 10 333.

Duchek JM, Hunt L, Ball K, Buckles V, Morris JC (1998) Attention and Driving Performance in Alzheimer’s Disease. The Journals of Gerontology: Series B 53B(2) 130-141.

Goldacre R, Yeates D, Goldacre MJ, Keenan TDL (2015) Cataract Surgery in People with Dementia: An English National Record Linkage Study. Journal of the American Geriatrics Society 63(9) 1953-1955.

Jefferis JM, Clarke MP, Taylor JP, Brittain KR (2014) Challenges for the surgeon treating people with dementia: a qualitative study exploring anesthetic choices. Clinical

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Ophthalmology 8 1993-9.

Jefferis JM, Taylor J-P, Clarke MP (2015) Does cognitive impairment influence outcomes from cataract surgery? Results from a 1-year follow up cohort study. British Journal of Ophthalmology 99(3) 412.

Kavcic V, Vaughn W, Duffy CJ (2011) Distinct visual motion processing impairments in aging and Alzheimer’s disease. Vision Research 51(3) 386-95.

Leat SJ, Chan LL-L, Maharaj P-D, Hrynchak PK et al (2013) Binocular Vision and Eye Movement Disorders in Older Adults. Investigative Ophthalmology and Visual Science 54(5) 37983805.

Livingston G, Sommerlad A, Orgeta V, Costafreda SG et al (2017) Dementia prevention, intervention, and care. The Lancet 390 (10113) 2673-2734.

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

Loughrey DG, Kelly ME, Kelley GA, Brennan S, Lawlor BA (2018) Association of age-related hearing loss with cognitive function, cognitive impairment, and dementia: a systematic review and meta-analysis. JAMA Otolaryngology 144(2) 115-126.

Maharani A, Dawes P, Nazroo J, Tampubolon G, Pendleton N (2018) Cataract surgery and agerelated cognitive decline: A 13-year follow-up of the English Longitudinal Study of Ageing. PLoS One 13(10) e0204833.

Mckeefry D, Bartlett R (2010) Improving vision and eye health care for people with dementia.

Bradford: Thomas Pocklington Trust.

Migliaccio R, Agosta F, Scola E, Magnani G et al (2012) Ventral and dorsal visual streams in posterior cortical atrophy: a DT MRI study.

Neurobiology & Aging 33(11) 2572-84.

Nael V, Peres K, Dartigues JF, Letenneur L, Amieva H, Arleo A, Scherlen AC, Tzourio C, Berr C, Carriere I, Delcourt C, Helmer C (2019) Vision loss and 12-year risk of dementia in older adults: the 3C cohort study. European Journal of Epidemiology 34 (2) 141-152.

Pal A, Biswas A, Pandit A, Roy A et al (2016) Study of visuospatial skill in patients with dementia. Annals of the Indian Academy of Neurology 19(1) 83-8.

Read S, Waterman H, Morgan JE, Harper RA, Spencer AF et al (2018) Glaucoma, dementia, and the “precipice of care”: transitions between states of medication adherence. Patient Preferences & Adherence 12 1315-1325.

Rogers MaM, Langa KM (2010) Untreated Poor Vision: A Contributing Factor to Late-Life Dementia. American Journal of Epidemiology 171(6) 728-735.

Rowe FJ (2017) Vision In Stroke cohort: Profile overview of visual impairment. Brain & Behavior 7(11) e00771.

Royal National Institute of the Blind (2018) Eye health and sight loss stats and facts. London: RNIB. Santhouse AM, Howard RJ, Ffytche DH (2000) Visual hallucinatory syndromes and the anatomy of the visual brain. Brain 123(10) 2055 2064.

Sommerlad A, Perera G, Mueller C, SinghManoux A et al (2019) Hospitalisation of people with dementia: evidence from English electronic health records from 2008 to 2016. European Journal of Epidemiology 34(6) 567-577.

Impact of infection outbreak on staff well-being This rapid systematic review discusses the potential impact of infection outbreaks on the psychological state of healthcare staff and explores suggestions to support their psychological well-being.

Thematic analysis of six articles resulted in three themes: 1) emotional responses (fears/concerns, tension, stress, confusion, and no additional challenges), 2) ethical dilemmas, and 3) reflections on work attendance. Identified suggestions to support and protect care staff related to education, provision of information, housing, materials, policy and guidelines. This article provides starting points for further research and contributes to the preparation for future infection outbreaks.

Embregts P, van Oorsouw W, Nijs S (2020) Impact of infection outbreak on long-term care staff: a rapid review on psychological well-being.

Journal of Long-Term Care 2020:70–79. Published online 13 July at https://journal.ilpnetwork. org/articles/40/ (Open access)

Managing Covid-19 in nursing homes The Journal of Nursing Home Research has published an issue with many of the articles focusing on the impact of Covid-19 on nursing homes and the contributions include articles from different countries. Molloy and colleagues discuss the experience of managing Covid-19 in Irish nursing homes. They cover key issues, interventions by clinical support teams as well as discussing the challenges for privately owned and religious homes. The article concludes with a number of lessons learned for critical actions to manage Covid-19 in residential care settings.

Molloy DW, O’Sullivan C et al (2020) The experience of managing COVID-19 in Irish nursing homes in 2020. The Journal of Nursing Home Research (6): 47-49. Published online as doi 10.14283/jnhrs.

2020.13 (Open access)

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

Cancer care and dementia: decision-making This qualitative study reports on the cancer decision-making experiences of people with cancer and dementia, their families, and healthcare staff.

Decision-making raised complex ethical dilemmas and challenges and raised concerns for families and staff around whether correct decisions had been made. Findings suggest that cancer treatment decisionmaking for people with dementia should be an ongoing process and has emotional impacts for the individual, relatives, and staff.

Longer, flexible, and additional appointments may be required to support decision-making by people with cancer and dementia.

Evidence-based decisionmaking guidance on how dementia impacts cancer

prognosis, treatment adherence and efficacy is required.

Griffiths AW, Ashley L et al (2020) Decision‐making in cancer care for people living with dementia.

Psycho‐Oncology 2020:1– 8.

Published online 21 June as doi 10.1002/pon.5448 (Open access)

A sense of home in nursing homes Researchers interviewed 35 residents with dementia to explore what matters to them based on their perceptions of nursing homes as home.

Analysis resulted in one over-arching theme: “tension between the experiences of a nursing home being a home and an institution” and five sub-themes; “myself and my relationships with fellow residents”, “creation of individualised living spaces”, “single rooms with personal decor that enhances a sense 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

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connectedness”, “transition between the old home and the new home” and “significant activities providing meaning”.

Findings showed that ‘home’ was an emotive word that awakened many associations.

Participants reported mixed feelings and stated that they could thrive even if they missed their old homes. The participants wanted greater possibilities for meaningful relations and opportunities to continue some activities they did in their former home.

Nygaard A, Halvorsrud L et al (2020) What matters to you when the nursing is your home: a qualitative study on the views of residents with dementia living in nursing homes. BMC Geriatrics 20:227. Published online 29 June as doi 10.1186/s12877-02001612-w (Open access)

Also published: This Swedish study explored how a sense of home and belonging can be supported by the environment in nursing homes. Qualitative research was conducted in eight nursing homes that had ‘good’ design environments and the research focused on the communal areas where residents’ everyday lives expand beyond their private rooms. The authors conclude that the findings provide a situated understanding of how communal areas in nursing homes can invite a sense of home and belonging for the residents.

Johansson K, Borell L, Rosenberg L (2020) Qualities of the environment that support a sense of home and belonging in nursing homes for older people. Ageing and Society:1-22. Published online 17 July as doi 10.1017/S0144686X 20000896 (Open access)

Exploring the role of family carers To inform healthcare development and delivery, researchers interviewed 25 carers to explore perceptions of their role in caring for a family member with dementia and to identify carers’ skills and attributes and factors impacting on care.

‘Constructing normalcy’ was central to all carers’ actions,

The Journal of Dementia Care 39

impacted by stage of life and relationship status and driven by a holistic focus on their care-recipient’s quality of life.

Goals guiding carers were: keeping the peace; facilitating participation, happiness and independence; and ensuring safety. Enablers included social contact, knowledge and quality social services. Barriers included health and legal issues, symptoms of dementia and reduced knowledge.

Hale L, Mayland E et al (2020) Constructing normalcy in dementia care: carers’ perceptions of their roles and the supports they need.

The Gerontologist 60(5):905-915.

Published online 13 Nov 2019 as doi 10.1093/geront/gnz151.

Specialling practices in hospital wards This mixed-method study focused on specialling practices for hospitalised older patients in acute wards. 58 observations were undertaken of specialling practices for 12 hospital patients in four wards.

Specialling practices differed in relation to the type of care required, the presence of the patients’ personal possessions, the presence of medical devices, patient acuity and ward busyness. It concludes that specialling practices differ according to patient need and that the staff member’s familiarity with the ward and their patients are important factors in positive specialling.

The authors state that the specialling role needs clearer definition, including the type of educational preparation and workload support to ensure safe and good quality care.

Cook J, Palesy D et al (2020) An observational study of older patient specialling in acute hospital settings. International Journal of Older People Nursing: e12323 (early view). Published online May 18 as doi 10.1111/opn.12323.

Workforce development for quality care The health and social care workforce requires access to appropriate education and training to provide quality care for people with dementia.

This mixed method study investigated the barriers and facilitators to implementation

of dementia education and training in health and social care services. Factors which supported staff capability included the use of interactive face-to-face training, and training that was relevant to their role. Factors that increased staff “motivation” included skilled facilitation of training, trainees’ desire to learn and the provision of incentives (e.g. attendance during paid working hours, badges/certifications).

“Opportunity” factors were most prevalent with lack of resources (time, financial, staffing and environmental) being the biggest perceived barrier to training implementation. Barriers to and facilitators of dementia care training implementation and behaviour change for staff should be considered by health and social care providers in the context of dementia training design and delivery in order to maximise potential for implementation.

Surr CA, Parveen S et al (2020) The barriers and facilitators to implementing dementia education and training in health and social care services: a mixed-methods study. BMC Health Services Research 20:512. Published online 5 June as doi 10.1186/s12913020-05382-4 (Open access).

Future planning for people with dementia The conceptualisation of Alzheimer’s disease as an illness with ‘no future’ exposes people with the condition to significant fear and stress.

Exploring how people look ahead to the future in the face of Alzheimer’s disease is therefore important. Interviews explored the future outlook of 14 people with Alzheimer’s disease and their carers.

Thematic analysis identified how participants managed their changing futures through focusing on positive information, and taking ‘one day at a time’. Younger and older people shared similar future outlook and coping strategies. Both people with Alzheimer’s disease and carers avoided looking far ahead as a way of managing the uncertain

40 The Journal of Dementia Care September/October 2020

future. Such avoidance suggests that policy which encourages future planning should consider its utility and explore ways of helping people to plan, whilst focusing on daily living.

Ashworth, R (2020) Looking ahead to a future with Alzheimer’s disease: coping with the unknown. Ageing and Society 40(8): 1647-1668.

Published online 28 March 2019 as doi 10.1017/S0144686X19000151 (Open access)

Potentially inappropriate medication Potentially inappropriate medication (PIM) use is associated with increased risk of adverse events, hospitalisation and mortality.

This research assessed the patterns and associations of PIM use in 448 older adults with mild-to-moderate Alzheimer’s disease in nine European countries, using data from NILVad, an 18-month randomised control trial. Of 448 participants, over half (55.8%) were prescribed a PIM with 30.1% being prescribed more than two PIMs. It was found that PIM use is highly prevalent in mild-to-moderate Alzheimer’s disease and is associated with increased adverse events, unscheduled hospitalisations and GP visits.

Murphy C, Dyer AH et al (2020) Potentially inappropriate medication use in older adults with mildmoderate Alzheimer’s disease: prevalence and associations with adverse events. Age and Ageing 49 (4):580–587. Published online 30 May as doi 10.1093/ageing/afaa067

Robot companion pets at home The use of robot companion pets for people in care homes has been studied, but there has been little research in people’s own homes. This study qualitatively explored the effects of a robot cat for 12 people in their own homes, without specifically investigating the effects on a particular symptom as dementia affects people in different ways. Findings were synthesised into two overarching themes: the effect of the cat on mood and behaviour, and the interaction

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with the cat. In terms of acceptability of the cat, participants varied from total rejection on sight to ‘love at first sight’. Where accepted, the cat encouraged communication with others, and became a talking point within the wider family. Where the participant enjoyed the sound and movement, the stimulation provided by the cat’s meow and motion encouraged a connection and stroking of the cat that was often calming where dementia symptoms were distressing.

Acknowledging it is a smallscale study, the authors suggest that benefits of the robot pet were evident and that where the pets were accepted, they provided positive outcomes.

Pike J, Picking R, Cunningham S (2020) Robot companion cats for people at home with dementia: A qualitative case study on companotics. Dementia. Published online 16 July as doi 10.1177/1471301220932780 (Online first)

Primary and community care This review aimed to synthesise the evidence to establish what works for managing complex conditions, including dementia, in older people in primary and community care. The study concludes that primary and community care interventions for complex conditions in older people should include: (a) clear intervention targets; (b) explicit theoretical underpinnings; and (c) elements of self-management and patient education, structured collaboration between healthcare professionals and professional support. Further work needs to determine the optimal intensity, length, team composition and role of technology in interventions.

Frost R, Rait G et al (2020) What works in managing complex conditions in older people in primary and community care? A state‐of‐the‐art review. Health and Social Care in the Community 00: 1– 13. Published online 15 July as doi 10.1111/hsc.13085 (Open access)

BOOKS/RESOURCES n Living Well with Dementia through Music: A resource book for activities providers and care staff Catherine Richards (ed), Jessica Kingsley Publishers, ISBN 9781785924880, £25 Thanks to the work of charities such as Music for Dementia and Playlist for Life, many of us now recognise the immense benefits of music for people living with dementia.

However, we may not know how to use music in practice in different ways to ensure it is meaningful and therapeutic.

This book sets out to help.

It is written by different experts in the field who share lots of useful ideas on practical approaches. Their insightful contributions are rooted in practice with a range of tips from something as simple as where to buy percussion instruments to how to create a person’s musical biography.

They also introduce us to a number of products that many may not be familiar with, including sounding bowls and the Silver Song Music Box.

Of particular interest is chapter five where Harriet Powell writes about how music can be used spontaneously throughout the day and the benefits it brings to people with dementia and care staff. We often think of music as a structured and organised event, but this chapter demonstrates how impulsiveness can bring meaning to a person’s day.

A key example is how singing and music can reduce the anxiety often caused during personal care and Powell gives advice I am confident family members and staff alike will find helpful.

Another important contribution is chapter 10 from Sarah Metcalfe. She describes the tears and red flag songs system used by Playlist for Life. She explains how we can support people with dementia

when they become distressed by a song by designating it, after consultation, as a “red flag song”, i.e. one that care staff know not to play again.

In a similar manner chapter 15, by Arash Bazrafshan, says that we should enable periods of silence. Both of these are crucial messages for us all to remember when using music.

Finally, chapter 14 is especially useful as it focuses on the importance of documentation in relation to musical needs and gives examples of documents which can be employed for this purpose. The topic of documentation is particularly significant if we want to raise the profile of musical needs as such and have them recognised in the same way as physical needs.

Our only worry is that some

potential readers won’t be drawn to the book because of its subtitle, which tells us that it is a resource book for activities providers and care staff. This is clearly a book for all, from experienced music therapists to individuals new to the benefits of music for people with dementia.

David Moore, dementia lead, and Ming Hung Hsu, music therapy lead, both at MHA.

Resources The Social Care Institute for Excellence (SCIE) updated its coronavirus advice hub with new and revised guidance for providers as the government eased lockdown restrictions. It includes new guidance on delivering safe adult day care, guidance and training on key topics like infection control, dementia, and mental capacity, and a variety of resources for different parts of the sector such as care homes and home care. There is also new guidance in the form of a technology checklist for video calling an adult or carer. www.scie.org.uk As wearing face coverings became mandatory in shops at the end of July, Alzheimer’s Society issued advice in response to the fact that some people with dementia may not like putting on a mask or understand why they should. Should a person with dementia wear a face mask for coronavirus? is designed to help with mask-wearing but also to set out who may be exempt. “These rules do not apply to a person with dementia if they have a ‘reasonable excuse’ not to wear a face covering,” it says. Reasonable excuses include those cases where wearing a face covering would cause severe distress. www.alzheimers.org.uk

Alzheimer’s Society offers a range of other practical advice for people with dementia and those supporting them during the pandemic. That support may be undertaken in the same household or at a distance. Guidance covers subjects like staying safe, activities, shopping, care homes, mental health and more. www.alzheimers.org.uk Dementia Carers Count (DCC), which supports family carers of people with dementia, has moved over to online learning programmes while coronavirus restrictions continue. It has set up a new Virtual Carers Centre with resources including videos from professionals and family carers, bitesize courses, blogs with tips and advice, and one-to-one calls with DCC’s team of experts. The charity’s faceto-face courses for carers have had to be suspended, but it said that people with dementia and carers had become isolated so their need for support was greater than ever. Director of services Steve Dubbins said the DCC team had engaged with the charity’s existing network of carers, its “ambassadors” and its carers advisory panel to take advice on what carers really needed from an online resource. https://dementiacarers.org.uk

As day centres began reopening to users of services and staff, new guidance was issued by the National Institute for Health Research (NIHR) to support managers and volunteer coordinators through the process. Helping adult day centres to ‘unlock lockdown’ is a free download and draws on existing Covid-19 guidance so as to help with the task of making day centres safe, including social clubs and community centres. Part one of the guidance covers practicalities of reopening, including infection control and supporting service users, carers, staff and volunteers, while part two is an editable Word document that aims to prompt reflection on what has happened during lockdown and how to move forwards. Here is a link to the guidance: www.kcl.ac.uk/scwru Campaign group Music for Dementia, which seeks to make music available for everyone living with dementia, has launched an internet radio station called M4d Radio. It is free to listeners and is available 24 hours a day and seven days a week. M4d Radio broadcasts on five channels, depending on musical preference, with four channels providing music by decade (1930s to the 1970s) and one channel providing a mix from various decades. The mixed channel is intended for care homes because it is ‰

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RESOURCES ‰ suited to large groups listening together. The station is available on any internet-enabled device, including computers, tablets, mobile phones, smart TVs and Alexa units. www.musicfordementia.org.uk The Young Dementia Network, a YoungDementia UK initiative, has launched a Personal Checklist endorsed by Alzheimer’s Research UK, Dementia UK and YoungDementia UK. Created at the suggestion of a person living with young onset, it is designed for anyone who has concerns about the signs and symptoms of young onset dementia. It is not a diagnostic tool but is intended to be used as a checklist which individuals can use to record symptoms they or a family member or friend - may be experiencing so as to aid discussion with their GP. www.youngdementiauk.org/per sonal-checklist

Another initiative from the Young Dementia Network is young onset dementia ID cards, one for use by the person themselves and the other by family members, supporters and carers. Personal information can be recorded on the cards that might be useful if assistance is needed. Additionally, the network has created a document providing guidance for dementia support workers, dementia advisers and key workers who usually support older people with dementia. The guidance, developed by younger people with dementia themselves, outlines the issues younger people with the condition face in particular. www.youngdementiauk.org Beth Britton’s blog Distancing with Dementia offers practical ideas for living with dementia during social distancing. Among them are suggestions for activities while coronavirus

Blogs I’m watching

by Mark Ivory Alzheimer’s Research UK (ARUK) reckons its income, which goes to fund new research projects, may fall by 45% this year. As a major funder of dementia research, it is keen to protect the commitments it has already made but at the price of postponing funding for any new research. So it is with an almost audible sigh of relief that Fiona Calvert writes in the ARUK blog about how labs are starting to reopen as coronavirus restrictions ease. But it is far from business as usual. The blog reveals novelties like 7am starts as scientists work in new shift patterns, labs operating at 20% capacity with plenty of home working as well, and deep cleaning of equipment to prevent contamination of experiments. “Labs are usually busy places, with researchers moving in and out throughout the day,” Fiona writes. “Scientists are often working on multiple experiments at once, discussing their ongoing results with their colleagues and working on their laptops during breaks in their experiments. But now things will look very different. Not only are numbers restricted, many institutions have also put ‘lab work only’ rules in place.

This means researchers continue to work from home whenever possible.” www.dementiablog.org

restrictions last, including those in a post titled Activities to try in care homes and at home in which she lists activities she has found to be most popular in her freelance consultancy role with a small care home group. Among them are the Nature Scavenger Hunt, virtual tours of landmarks in the UK and abroad, arts and crafts, and various ideas inspired by music, gardening and sport. https://distancingwithdementia. org.uk Dementia UK has also been running blog posts on meaningful activities for families with dementia during the pandemic. In her post The arts, creativity and dementia, Karen Harrison Dening discusses the benefits of the arts and other creative pursuits in terms of self-expression and cognitive stimulation. Painting, music, films and reading are the topics she touches upon. www.dementiauk.org

John O’Doherty talks candidly about his experience of having to spend much of the spring and summer at home after being put on the government’s shielding list. In his Alzheimer’s Society blog post he points out that “while shielding will protect me from Covid-19, it won’t shield me from my dementia.” John has vascular dementia as well as several other serious medical conditions and unsurprisingly he found lockdown hugely difficult. “Because of my dementia, I suffer severely with panic attacks when I leave the house,” he says. “I have learned that these panic attacks can be equally as bad when I have to remain in my house due to enforced lockdown.”

Before shielding John was busy with attending meetings, writing, public speaking, and even working with the Halle orchestra. When it began, he couldn’t even go shopping. And now it has ended – at least to an extent – he sometimes forgets about social distancing and stands too close to other people. “My only solace is that I have been here before, at the point of my dementia diagnosis,” he concludes. “I drew strength and accepted that diagnosis, moving into a world of optimism, friendship, self-worth and self-respect. Hopefully that world re-awaits me again.” www.alzheimers.org.uk/blog During the spring many of us were hastily introduced to a brave new world of videoconferencing technology and its remark-

42 The Journal of Dementia Care September/October 2020 Vol 28 No 5

Charity Music for Dementia reports that the events and services listed on its Musical Map increased by 50% when coronavirus struck, embracing everything from live-streamed performances in care homes to virtual choirs and “dementia discos”. Although many of the dementia friendly musical activities previously listed on the map had to be postponed, online singing sessions have flourished, including personalised performances from the Forget-Me-Not Chorus.. https://mfd2020.co.uk Manchester Camerata, which runs the pioneering music therapy project Music in Mind, has received a £50,000 grant so that it can be delivered online.

Due to start in September, Music in Mind: Remote is intended to give “emergency relief” from isolation for people with dementia in care homes.

In the project, Manchester

able ability to maintain friendships, family bonds and professional relationships across a distance. One day this pandemic will become a memory, but it will also leave a legacy of the good and bad things it has brought us. So which category will medical consultations via videolink fall into – good or bad? In his blog South Yorkshire doctor Rod Kersh, who counts dementia and person-centred care among his preoccupations, shares his exasperation at the delays to his remote consultations with patients caused by dodgy microphones and images that flicker and freeze. Then there is the uncomprehending care home resident whom he is trying to help. “It causes me actual physical pain, such is my level of frustration,” he writes, before going on to predict that this new vogue of “teleconsultations” will set the trend for post-Covid clinical encounters.

“Teleconsultation has led to so many increases in efficiency that a return to filled waiting rooms with patients coughing and sneezing on one another will surely become impossible,” Rod suspects. “Yet, how do we help the systems evolve...? We need to have minimum standards for hardware, software and internet connectivity. Not that difficult. It is unacceptable for a patient to peer into a dodgy Android phone over a weak broadband connection when I am asking them sensitive questions; mistakes can be made, it is inequitable.” https://almondemotion.com/2020

RESOURCES & EVENTS Camerata’s orchestra team up with music therapists for groupbased musical improvisation, aimed at encouraging people with dementia to express themselves and communicate with others. The grant, from the government’s Innovate UK programme, will pay for instructional videos, guides to delivering musical activities and online support from consultant music therapists. https:// manchestercamerata.co.uk

Antibacterial hand gels, Aquasan surface wipes, sanitiser dispensers and surface sprays from 1st Medical Ltd are intended to safeguard against the spread of Covid-19, the company says. It says that orders received by 2.30pm will be processed for next day delivery, although larger quantities can take 2-3 working days. Orders over £250 qualify for 50 disposable face masks as a bonus. www.1st-medical.co.uk

A variety of face masks, hand santiser gels and a new “no touch” ID card holder are on offer from LogoPromo. Reusable 3-ply face masks are £3.50 each for 100 and disposable face masks with 3-ply protection and EN14683 certification are 22p each for 1000. Hand santisers are £2.99 each for 500 ml in multiples of 40. www.logopromo.co.uk

AVC Training in Cambridgeshire is offering infection control training to relatives of care home residents in order to support lower risk visits to the homes. It seeks to strike a balance between welcoming care home visits and the risks presented by Covid-19. The virtual training, which is free, takes place via Zoom. https://avctraining.net

A recorded webinar from Alzheimer’s Disease International (ADI) takes a look at practical measures taken by care organisations around the world to cope with Covid-19. Called Innovating for the new normal: Experiences from around the world, in the webinar ADI’s member associations talk about how they have adapted and reinvented their support services in response to the pandemic. www.alz.co.uk Health Education England e-Learning for Healthcare has worked with Health Education England and Skills for Care to add new content to the Care Certificate e-learning programme. New scenario sessions have been launched to support learners working towards the 15 standards of the Care Certificate, the updated

scenario settings relating to primary care, mental health, acute, end-of-life and home care. The existing scenario sessions, which were launched in 2018, have also been updated and are now suitable for those who wish to learn via a mobile phone. www.e-lfh.org.uk The Care Quality Commission (CQC) has consulted with adult social care providers to set out expectations in relation to CQC inspections. According to the CQC, the new document – How to get the most out of inspection - addresses common misunderstandings and describes clear expectations with the aim of better joint working with care providers and ultimately better care services. www.cqc.org.uk

Events Many conferences due to take place this year have been postponed due to coronavirus and new dates have yet to be announced. Here is the latest information as we went to press, including rescheduled events. n 16 September Next Steps for Adult Social Care in England Policy conference online with speakers from SCIE, Care England and the LSE. Details at www.westminsterforumprojects.c o.uk n 17 September Next Steps for Social Prescribing in England Morning conference will be online which will assess progress and next steps for social prescribing.

More information at www.westminsterforumprojects. co.uk n 21-22 September International Dementia Conference Streamed live and available on demand, this conference from HammondCare is titled Care in the Age of Outrage. For more information, go to www.dementiaconference.com

n 7 October Next Steps for Adult Social Care in Scotland Morning conference online on improving standards and develping effective models of care. Go to www.scotland policyconferences.co.uk n 8-9 October NICON20 Belfast conference for Northern Ireland’s health and social care sector discusses delivery of the Health and Wellbeing 2026 strategy. Details at www.nhsconfed. org/events/2020/10/nicon20 n 20-22 October 30th Alzheimer Europe Conference The planned Bucharest event will now be next year, but this year’s event goes online to discuss “dementia in a changing world”. www.alzheimer-europe.org

made. More information at https://2020.alzheimers2020 .co.uk. n 3 November Together 4 Dementia 2020 Free online conference from BRACE with talks on robotics, care, research and diagnosis.

Details at www.alzheimersbrace.org n 9-10 November 2020 Dementia, Care & Nursing Home Expo Conference and exhibition in Birmingham for care home owners, managers and dementia specialists. Tickets free at www.carehomeexpo.co.uk/index. asp.

n 23-24 October Alzheimer’s Show 2020 London event sharing the latest knowledge and products. Details at www.alzheimersshow.co.uk

n 11-12 November UK Dementia Congress 2020 Organised by JDC, the 15th UK Dementia Congress, online this year, will bring together the latest ideas, research and innovations, as well as being a great opportunity for professional networking. Go to www.careinfo.org.

n 29 October Dementia 2020: The Final Review London conference reviewing the government’s 2020 strategy and assessing the next steps to be

n 3 December Future of Ageing 2020 London conference on delivering a better society for all generations.

More information at https://ilcuk.org.uk.

n 3 December Tackling Loneliness and Social Isolation in Older People Conference in London looking at progress and sharing successful and sustainable interventions. Go to https://localgovernmentinsight.com. n 10-12 December ADI International Conference Taking place in Singapore, the Alzheimer’s Disease International event will be titled Hope in the Age of Dementia: New Science, New Knowledge, New Solutions. Go to www.adi2020.org. n 9-10 March Research Conference 2021 Alzheimer’s Research UK conference on the latest findings in dementia research taking place in Brighton. Registrations from the cancelled 2020 conference have been transferred to this date.

Information at www.alzheimersresearchuk.org.

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

Vol 28 No 5 September/October 2020 The Journal of Dementia Care 43

THANK YOU FOR YOUR ENTRIES

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

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

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

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

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

SPONSORSHIP OPPORTUNITIES CAROLINE.BOWERN@INVESTORPUBLISHING.CO.UK

#DementiaCareAwards

category sponsors

careinfo.org/awards