The landscape of dementia - Also inside this issue: End of Life Doula UK
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For all who work with people with dementia Vol 29 No 3 May/June 2021
The landscape of dementia
Also inside ! Volunteer companions in hospital ! Eating and drinking
this issue: at end of life ! GREAT CR in dementia care ! Digital support
MAIN SPONSOR
We are delighted to again
sponsor the care awards for the
23rd year. This is going to be a
special evening to recognise all
the efforts, dedication and
incredible sacrifice by the sector
over the last year. It is always a
fantastic event, but I am sure
everyone is more that ready
to get together and I am
looking forward to seeing
everyone already!
Richard Lunn
Managing Director – Healthcare
The National Care Awards will be returning as a live event on
Friday 19th November 2021 at the London Hilton Metropole
Entries now open!
#careawards careinfo.org/award/national-care-awards-2021
Categories for 2021 include...
! Carer ! Care Home of the Year
! Care Registered Nurse ! The Dignity & Respect Care Home of the Year
! Care Team ! Care Newcomer
! Care Home Manager ! Care Champion
! Dementia Care Manager ! Care Leadership
! Care Operations / Area Manager ! Care Home Group Over 10 settings NEW
! Care Activities Co-ordinator/Facilitator ! Care Home Group Under 10 settings NEW
! Care Housekeeper ! Lifetime Achievement in Care
! Care Chef ! Care Personality
Enter now! To submit your entry, visit:
careinfo.org/award/national-care-awards-2021
CATEGORY SPONSORS
ASSOCIATED SPONSORS
If you are interested in category sponsorship
Photo Booth Dinner Programme for 2021, or require further information
SPONSORED BY SPONSORED BY
please contact Caroline Bowern:
caroline.bowern@investorpublishing.co.uk
or 0797 4643292
As organisers, we will work in close collaboration with the Hilton to ensure the event takes place in the safest possible environment
and follows best practice in relation to Covid-19. Government advice is constantly evolving and we will react accordingly to deliver
an event that recognises the fantastic work of the sector in a setting where we can celebrate together safely.
Inside
For all who work with people with dementia Vol 29 No 3 May/June 2021 this issue...
! Project updates & viewpoints
12
Support for eating and drinking at end of life 10
A new booklet tells family carers what they need to know to help a person living with
dementia who has eating and drinking difficulties towards the end of life.
Yolanda Barrado-Martín and colleagues say why it is needed
Have I told you about my blackbird? 12
Intensive Interaction is a communication approach attending primarily to an individual’s
social and emotional needs. Jules McKim illustrates it from a very personal perspective by
describing conversations with Helen and Frank, his own mum and dad
Bus stops in care homes: all aboard? 14 14
Fake bus stops in care homes may be reassuring to some residents but are they ethical?
Toby Williamson used to be a critic, but explains why he had a change of heart
Social prescribing: a vital means of access to the arts 16
Social prescribing can help to combat feelings of fear and loneliness in the often prolonged
periods leading to a diagnosis of dementia. Veronica Franklin Gould discusses arts
prescribing and how it can best be timed to nurture resilience in the community
A new picture book explores the landscape of dementia 18
Positive examples of how to live well with dementia can be hard to find, but John Killick 16
and Claire Craig have found a creative solution in the form of a picture book which they
believe will counter the negative images
! Features
Friendly Faces: volunteer companions in hospital 20
Volunteers can provide companionship and mental stimulation for people with dementia in
hospital, but how effective are they? Menaka Jayasekera and colleagues describe their
evaluation of the “Friendly Faces” project in Bath to cast light on the benefits that
volunteers can bring
GREAT CR – a potential new service in dementia care 24 Regulars
A personalised cognitive rehabilitation approach for people with dementia has had
promising results in helping them to regain and maintain everyday skills. Jackie Pool and
Aleksandra Kudlicka assessed the feasibility of extending the GREAT CR programme to ! Comment by Mark Ivory 5
care homes
! News 6
Better Living with Rare Dementia: digital support 27
Given that people with rare forms of dementia are widely dispersed, digital interventions as
! JDC Asks 8
a means of providing them with support could be a way forward. In the fourth article of our
rare dementia series, Joshua Stott and Aida Suarez-Gonzalez report on their digital ! Dementia Diaries 9
support platform Better Living with Rare Dementia
! Perspectives
The role of doulas in dementia care 30
by Jonathan Papworth 11
End of life doulas work with people who have had a terminal diagnosis, including those
with dementia in their final months. Aly Dickinson and three end of life doulas talk about the
role and present a selection of dementia-related case studies
! Research reports 32
! Resources 34
! Events 35
4 The Journal of Dementia Care May/June 2021 Vol 29 No 3
COMMENT
@JDementiaCare
Green shoots emerging
@JournalofDementiaCare
www.facebook.com/
JournalOfDementiaCare
in a barren landscape
Mark Ivory, Editor, Journal of Dementia Care
I
Editor Mark Ivory
Managing Editor Sue Benson n this issue of JDC, we cover our usual wide range of topics,
from digital support for people with a rare dementia, cognitive
Production Andrew Chapman
rehabilitation and social prescribing to volunteering in
Designer Rob Wheele
hospitals and end of life care. We even talk about the rights and
Editor-in-chief Dr Richard Hawkins wrongs of bus stops in care homes – are they merely an act of
Advertisement Manager Caroline Bowern deception or can we justify taking someone with dementia to wait
Subscriptions Tel: 020 7104 2000 for a bus that never comes? Toby Williamson, who used to have
subscriptions@investorpublishing.co.uk his doubts and led the Dementia Truth Inquiry a few years ago, tells us about his
“road to Damascus” moment.
The Journal of Dementia Care is published
six times a year by Investor Publishing Ltd,
Of course, we discuss these topics against the horrendous backdrop of
1st Floor, Greener House, coronavirus, deaths from which were mercifully much reduced as we went to press.
66-68 Haymarket, London, SW1Y 4RF. The fact that well over 30,000 people have died from coronavirus in care homes is
Editorial: Mark Ivory
mark.ivory@investorpublishing.co.uk
an indication of the impact on people with dementia, who make up around 70% of
Advertising: Caroline Bowern 07974 643292 the care home population.
caroline.bowern@investorpublishing.co.uk But the repercussions go further still, as we report in this issue. Dementia
diagnosis rates, which shot up after the 2009 National Dementia Strategy called for
Subscriptions “good quality early diagnosis and intervention for all,” have stalled for the first time.
Investor Publishing Ltd, 1st Floor, Greener
House, 66-68 Haymarket, London, SW1Y Alzheimer’s Research UK is among those “extremely concerned” by a 40,000 drop
4RF. Tel: 020 7104 2000 in diagnoses between February 2020 and January 2021 which the government has
subscriptions@investorpublishing.co.uk pledged £17 million to try to reverse.
Subscription rate, zero-rated for VAT: As Jackie Pool mentions in her article about the ground-breaking cognitive
£101.00 if paying by credit card or invoice rehabilitation programme GREAT CR, diagnosis rates are part of a bigger picture.
£91.00 if paying by Direct Debit (UK only). In a report last year Age UK found that older people were not accessing health care
Add £20.00 mailing charge for Europe
Add £30.00 mailing charge for Worldwide for chronic or long-term health conditions for fear of the virus and taxing an
More details at: overstretched NHS, nor were they receiving the help, care and support needed to
www.journalofdementiacare.co.uk sustain their health and wellbeing. In a family survey by a coalition of dementia
© HAV 2018 Ltd organisations, a staggering 92% said that their loved one’s dementia symptoms had
ISSN 1351-8372 accelerated during the pandemic. Loneliness, isolation and sparse services will have
lasting impacts on physical and mental health.
Journal of Dementia Care However, as Jackie also suggests, opportunity often takes root in stony ground.
Advisory Board GREAT CR has a strong evidence base, improves everyday functioning and can be
Caroline Baker, Barchester Healthcare implemented in care homes and quite likely domicilary care too. Better still, there is
Paola Barbarino, Alzheimer’s Disease International a practitioner training programme run by Exeter University. In another article
Kate Lee, Alzheimer’s Society
Veronica Franklin Gould explains how “social prescribing” – primary care referrals
Professor Dawn Brooker, University of Worcester
Theresa Ellmers, University of Southampton to arts and wellbeing activities – can help to combat feelings of fear and loneliness.
Dr Nori Graham, Alzheimer’s Society Note that she says social prescribing can bridge the provision gap between
and Alzheimer’s Disease International symptom onset and diagnosis, a gap that can only have widened. Arts 4 Dementia
Tessa Gutteridge,Young Onset Dementia, Dementia UK
Jo James, Imperial College Heathcare NHS Trust
will be running a conference for those who want to find out more on 20-21 May.
Rachel Niblock Dementia Engagement and Empowerment These may look like green shoots in a barren landscape when there is so much
Project – people living with dementia policymakers must do to make the care system fit for purpose. But such initiatives
Sahdia Parveen, University of Bradford
Maria Pasiecznik Parsons, Creative Dementia Arts Network
can certainly contribute to our national recovery.
Lynne Phair, independent consultant nurse & expert witness
Jackie Pool, Dementia Pal Ltd The Journal of Dementia Care is a Writing for JDC:
Professor Graham Stokes, HC-One multidisciplinary journal for all professional Do you have a project or survey to report,
Professor Claire Surr, Leeds Beckett University
staff working with people with dementia, in or a change in practice organisation or
Dr Amanda Thompsell, South London and the Maudsley NHS
hospitals, nursing and residential care structure which has worked well (or not),
Foundation Trust
homes, day units and the community. The and would you like to share this
Toby Williamson, independent consultant
Lucy Whitman, former carer, writer, editor and trainer journal is committed to improving the quality experience with others? Do you have a
of care provided for people with dementia, by strong opinion you would like to express?
Consultant editors We welcome letters and contributions
keeping readers abreast of news and views,
Professor Jill Manthorpe, Professor of Social Work,
research, developments, practice and that promote discussion and debate
King’s College London.
training issues. The Journal of Dementia Care about dementia care.
Dr Hazel Heath, independent nurse consultant: older people
is grounded firmly in practice and provides a Contact the editor, Mark Ivory:
mark.ivory@investorpublishing.co.uk
lively forum for ideas and opinions.
Vol 29 No 3 May/June 2021 The Journal of Dementia Care 5
NEWS
Care homes urge caution as lockdown eases
News in brief While the gradual easing of absolutely tragic impact on
lockdown restrictions has been both them and their families,”
widely welcomed, care homes said the charity’s head of
Shortages hit palliative care
have urged caution in case it policy Gavin Terry.
A comprehensive review of dying, death and bereavement during the
sparks a resurgence of But the Independent Care
pandemic shows how shortages of PPE, essential medicines and
infections. Group (ICG) said that, while it
equipment meant that palliative care teams were unable to provide
adequate care for patients and their carers. Experts warn that the last From April residents in was pleased to see residents
year has been a stress test for community-based palliative care, which England have been allowed and relatives reunited, it was
was “stretched to and beyond capacity”. A joint study by the charity Marie indoor visits from two regular also necessary to be “cautious
Curie and three universities argues that it is essential to learn lessons from visitors with whom they can and careful.”
the pandemic if palliative care is to be ready for a projected 100,000 have physical contact. In As Office for National
increase in annual deaths in 20 years’ time. “Palliative and end of life care parallel, things like window Statistics figures showed
must be an essential part of the health and social care system and not a and outdoor visits are weekly care home deaths
forgotten after-thought,” said Marie Curie chief executive Matthew Reed. continuing from a broader from Covid-19 fell to 151 in
Go to www.mariecurie.org.uk for the Better End of Life Report 2021.
range of people. March, ICG chair Mike
Survey of care home visits during pandemic Alzheimer’s Society, which Padgham said there was a
has been campaigning for “real risk” infection rates
Disruption to care home visiting has been a major feature of the pandemic
and a new research project by Leeds Beckett University aims to identify and family carers to be recognised would rise again as more
share best practice on visits. Project leader Professor Claire Surr is seeking as integral to care, said it was people ventured out.
residents’ relatives, care staff, managers and others to take part in the “essential” that visits were “We saw the last time
research, which will examine barriers and facilitators to visiting during the seen as the default position. restrictions eased that care and
pandemic. Participants will be asked to complete a survey, helping “People with dementia have nursing homes suffered,” he
researchers to determine what would help care homes to adopt approaches been worst hit by the added. “We must be extremely
that are closest to usual practice for family and friends visiting a person with pandemic and have endured cautious to prevent that
dementia. To access the survey page, go to http://bit.ly/2OT4uvu months of isolation, with happening again.”
Action on Rights in Scotland
Dementia diagnosis rate falls
As lockdown measures ease north of the border, an Action on Rights
team has been created by charity Alzheimer Scotland with funding from
the Scottish Government. It is helping to implement the government’s
Open with Care visiting guidance, providing emotional and practical
support to families and friends of care home residents. The charity said A significant fall in the dementia diagnosis rate has been flagged
the Action on Rights team would provide advice on visits and help up by Alzheimer’s Research UK (ARUK), which said it was
families have informed discussions with care home staff responsible for “extremely concerned”. According to figures from NHS Digital,
arranging visits. “The Scottish Government have agreed that another diagnosis rates dropped by 40,000 between February 2020 and
level of intervention is required to support families and friends who are January 2021, from 471,252 to 429,858.
experiencing trauma because of the loss of meaningful contact,” said These figures represent the total number of people in England
Alzheimer Scotland chief executive Henry Simmons. with a coded diagnosis of dementia. While the government’s
Dementia Action Week 2021 Covid-19 mental health and wellbeing action plan promises £17
million to tackle the drop in diagnosis rates, ARUK said it was
Dementia Action Week, organised by Alzheimer’s Society, runs from 17
worried that many people with suspected dementia were not
- 23 May. The week is seen by the charity as an opportunity to urge the
government to rebuild social care and it is calling on its supporters to take seeking medical help during the pandemic. Susan Mitchell, head
part. Posters and flyers can be ordered from www.alzheimers.org.uk of policy, commented: “It is extremely concerning that the
dementia diagnosis rate has fallen during the past year. While we
‘Worrying picture’ over DNACPRs are disappointed by the figures, we hope they will act as catalyst
A “worrying picture” of poor involvement by people using services has for urgent change in the way we diagnose dementia.”
been found to lie behind do not resuscitate decisions during the
pandemic. This verdict from the Care Quality Commission (CQC) comes
in its final report on DNACPR decisions, which calls for a ministerial
oversight group to take responsibility for delivering improvements. In an
interim report before Christmas, the CQC found that unprecedented
pressure on care providers and rapidly changing guidance may have
led to DNACPR decisions being “incorrectly conflated” with other critical
care assessments. The CQC heard from stakeholders that blanket
decisions had been made without consulting the individuals concerned.
Online course on communication
Vamos Theatre, which works with dementia care professionals on non-
verbal communication, has created an online course to help health
professionals communicate with their patients remotely. The course -
Communicating Through Covid Times - explores communication via
video call and phone that would previously have been done face-to-
face. “The course helps participants understand why today’s Poetic justice: Residents and staff at care home group Nellsar have made a
communication methods add additional pressures and offers moving video of a poetry reading to mark a year since the first Covid-19
supportive strategies to help,” said course leader Rachael Savage. lockdown. In the poem, titled Thank You, they express gratitude to all who
www.vamostheatre.co.uk/CTCT. have made the experience easier to bear. Here is a link to “A special thank you
from Nellsar” www.nellsar.com/videos
6 The Journal of Dementia Care May/June 2021 Vol 29 No 3
NEWS
First Covid-19 vaccine dose provides
significant protection in care homes
News in brief
Care home residents gained transmit the virus to others.
Infection control funding extended
substantial protection against “Our study suggests that both
Care home infection control funding from the government has been
Covid-19 from a single dose of vaccines are effective at
extended until ther end of June with a cash boost of £341 million. The
either the AstraZeneca or Pfizer reducing infections in frail, older
additional emergency funding for social care is to support infection
vaccines, University College adults,” said Dr Maddie Shrotri prevention, control and rapid testing. Vic Rayner, National Care Forum
London (UCL) researchers have from the UCL Institute of Health CEO, said the new money was welcome but added it was “impossible
found. Health data from more Informatics. “The new evidence to not note the disparity in treatment of social care and the NHS”.
than 10,000 residents indicated is important because there is
that a single dose had prevented currently limited data about Dementia risk rises after Covid-19
56% of infections after four vaccine efficacy for this Dementia risk is heightened in people who have had Covid-19, particularly
weeks and 62% of infections vulnerable population.” those who needed intensive care, a study published in Lancet Psychiatry
after five weeks. Alzheimer’s Society said the suggests. Looking mainly at US health records Oxford researchers found a
Finding that the two results would enable more link between a diagnosis of covid and a diagnosis of one of several
vaccines were equally effective meaningful visits to residents psychiatric and neurological conditions, including dementia, in the following
six months. “Services must be prepared to deal with a large number of
in this group, whose average from relatives and friends,
potential dementia cases,” said Alzheimer’s Research UK head of research
age was 86, the study adding that social isolation had Dr Sara Imarisio.
indicated that even residents resulted in “shocking levels” of
who did become infected after deterioration in people with New Office for Health Promotion
the vaccine were less likely to dementia. The government has pledged to prioritise public health by establishing a
new Office for Health Promotion (OHP) within the Department of Health
and Social Care. The OHP will take over public health promotion from
‘Urgent need’ for dementia-friendly housing Public Health England. Alzheimer’s Research UK (ARUK) said dementia
prevention should be a priority but pointed out that the government
MPs have highlighted an including dementia, it says. policy paper accompanying the OHP announcement had made no
“urgent need” to ensure that The APPG inquiry heard mention of dementia. “We are concerned that this report lacks the detail
needed to effectively overcome the challenge of dementia prevention,”
housing is built in a way that evidence from 14 people,
said ARUK head of policy Susan Mitchell.
anticipates the care and including people with
support needs of people with dementia, carers’ organisations Social care workers on ‘poverty wages’
dementia. An inquiry by the and NHS workers. Inquiry Labour Party deputy leader Angela Rayner called for social care workers
All-Party Parliamentary Group chair Lord Best said getting to earn at least £10 an hour and said that “poverty wages” were holding
(APPG) on Housing and Care housing right made a “huge back the economy. She told the Unison Women’s Conference that a pay
for Older People says in a new difference” for people living rise was well overdue and “the least they deserve” after the dedication
report that new homes should with dementia and their carers. care staff had shown during the pandemic.
be “dementia-ready” from the “Our inquiry shows how
outset and that housing should ‘right-sizing’ or adapting the Top tips on visiting from My Home Life
be firmly embedded in home can avoid or postpone a My Home Life, which promotes quality improvement in care homes, has
dementia care pathways. move into residential care, posted Top Tips for supporting nominated visitors coming into see residents.
Pulling together evidence, saving places there for others Put together by a group of Essex care home managers, the practical tips
focus on helping care teams to welcome nominated visitors so that they feel
research and analysis, the who really need them,” he
confident and safety is assured. As for the future, they recommend building
report makes investment added. “Our recommendations on what has worked during the pandemic. “Keep the phone calls and Zoom
recommendations to challenge politicians and meetings going,” they advise. www.myhomelife.org.uk
government, offers practical practitioners but also ourselves
guidance to housing providers to get ready for a future when, Nurse recognised in awards
and “dementia-proofs” despite increasing numbers, A South Africa-born dementia care nurse has had a dedication throughout
national design principles. everyone with dementia can the pandemic recognised by the Market Third Sector Care Awards. Gladys
Many ordinary homes require have a fulfilling life.” Nkhola, who works at the independent hospital Monet Lodge in
significant investment to bring Housing for people Manchester, was given the award for her contribution to compassion in
them up to date and adapt with dementia - are we nursing. Monet Lodge provides residential care for people with complex
them to support people living ready? available at dementia and is operated by the charity Making Space. Joby Raju, clinical
lead at Monet Lodge, said: “Gladys has dedicated her life as a nurse to the
with a variety of needs www.housinglin.org.uk.
care of others. At 75, she continues to work tirelessly and
compassionately, night after night, to ensure that the patients in her care
Time for action: receive the absolute best care that they deserve.”
Cambridgeshire care group
Askham Village Community New care recruitment campaign
has called for more young The government hopes to mobilise thousands of people out of work or
people to consider a career in on furlough into social care with a new “Care for Others, Make a
social care. It chose Young Difference” recruitment campaign. The campaign in England emphasises
Carers Action Day to make short-term as well as long-term opportunities, suggesting that
the appeal and highlighted “jobseekers, volunteers and people on furlough” could register their
sisters Rebecca (left) and interest in personal care, wellbeing support, collecting and delivering
Chloe Browning, who both supplies, or “helping out with the cooking and cleaning”.
work at Askham with their
More News in brief on p10
mother Mandy Ladds (centre).
Vol 29 No 3 May/June 2021 The Journal of Dementia Care 7
JDC asks...
In its new white paper on NHS reform, the government
holds out the prospect of “innovation and integration”,
learning the lessons from the pandemic. What should
NHS reform mean for dementia care?
From left: Jo James, Susan Mitchell, Paul Edwards, Nori Graham and Jill Manthorpe
T
he government’s NHS of care, like the NHS, like fewer diagnoses since March exposed many faults in our
white paper, Integration education.” 2020 compared to the previous approach to dementia, in
and Innovation, was The government had an year and a disproportionate shocking and heart-breaking
published in February and opportunity, at a point where number of deaths. It has ways for many.
appears to be quite encouraging the dementia community have highlighted the unique Issues such as hospital
on the face of it. It speaks of the been bruised and battered by vulnerability of people with discharges, care home visiting,
importance of integrating their indifference and lack of dementia. lack of diagnosis, increasing
health with social care and local support, to offer a new way Now, more than ever, we can complexity and reductions in
government, and it emphasises forward which put the needs of see that the solution needs to be support services have exposed
the need to strengthen people with dementia and their a research-led approach. If the fragility of service provision
accountability and develop a carers at the centre of this new Integrated Care Systems, as and a lack of understanding at a
more user-centred model of legislation. However, they have proposed in the white paper, are national and local policy level.
care. failed, yet again, to prioritise the going to deliver for dementia, In that context you would have
But in spite of stating that it needs of this group. they will need to improve thought that any NHS reform
remains “committed to reform”, Jo James is lead nurse for diagnosis of dementia, enable (or indeed social care reform)
it does not address the dementia at Imperial College more people to take part in would seek to address what
significant pressures in social Healthcare NHS Trust. clinical trials, and ensure the really matters.
care – although the paper is health system can adapt to We know that dementia falls
G
clear that it is using the learning overnment proposals to deliver new treatments as soon down the gap between health
from the Covid-19 pandemic to reform the NHS rightly as they become available. and social care; both systems
inform it. If this is the case, one seek to improve With changes to public health should be working in unison to
has to question why there is so integration. However, we must structures, we must ensure help support a society ageing
little mention of people with also improve outcomes for there is better awareness about with dementia. The reality is
dementia, who were the most people with dementia, with how people can protect their fragmentation of service and
adversely affected group, had more accurate and timely brain health and reduce their lack of clinical ownership and
their human rights violated as diagnoses, reducing dementia risk of developing dementia. accountability.
Amnesty International said, and risk, and making sure services There is currently very little Given the problems people
were not kept safe during the are able to benefit from progress detail around how health with dementia and their
pandemic. in research. promotion will be delivered in families face, navigating a
These issues have given rise The success of the proposed the future. fractured system leads to
to reports by Amnesty reforms will depend on the Susan Mitchell is head of increasing complexity and a
International and the Care NHS being able to recover from policy at Alzheimer’s Research lack of timely support from
Quality Commission, as well as the burden of Covid-19 and UK diagnosis. These challenges
calls for an independent inquiry implement improvements to often continue right through the
O
and a new ministerial oversight address the current service ver the last 20 years, dementia pathway to the end of
body. A coalition of dementia capacity and workforce dementia care has been life.
organisations led by challenges. More will need to subject to frequent The NHS reforms and the
Alzheimer’s Society and be done for people affected by reforms, none of which has promise of social care reforms
Dementia UK called in March dementia, as has been made significant differences to (whenever they may be) divides
for “universal social care as a underlined by the impact of a people with dementia and their policy when it comes to
legacy of Covid-19, free at point pandemic that has led to 43,000 families. The last year has dementia care. In fact, what we
8 The Journal of Dementia Care May/June 2021 Vol 29 No 3
Dementia Diaries
really need is investment in in the quality of care for people
dementia care in its own right, with dementia. If he breaks it,
and a revolution in thinking there is little chance of real
and pathway development like change.
that which we saw in cancer Dr Nori Graham is emeritus People living with dementia from groups in the DEEP network
care in the late 1990s. consultant in old age are using a voicemail service to record their thoughts and
Paul Edwards is director of psychiatry experiences… wherever and whenever they feel like doing so.
clinical services at Dementia
W
This time, we feature three of our male Dementia Diarists, each
UK hatever the name of this reflecting on an issue which is close to his heart:
proposed legislation, it
T
here are two major is not the promised First, Clive Rogers talks about the friends he’s
problems affecting the reform of adult social care. At made from Zoom groups with other Dementia
quality of care for people the time of writing, we hear that Diarists, and with groups in the DEEP Network:
living with dementia: lack of this will be forthcoming – “I was in the Air Force for 26 years and we moved
integration between health and hopefully this year – and around every couple or three years. So, although
social care and a seriously readers of DC will be hugely you make friends, you don’t make true friendships which are
depleted, underfunded work interested in it because it may lasting… So I’ve got friends on these groups (DEEP and
force. The recent white paper well have a direct impact on Dementia Diaries) that I feel more of an affinity to than I have for
tackles neither of these. dementia care. In the anyone in the whole time I’ve been in the Forces almost. Even
The document describes meantime, the white paper’s though I haven’t even actually physically met them. And I’m
ways in which different parts of proposals to reorganise the really looking forward to when this Covid [ends]…that we can
the NHS, local authorities, and NHS are important too. meet up and we can get together as a group…”
independent sector will be There have been several
brought together through reorganisations of the NHS over Secondly, Keith Oliver reflects on what it’s like to
Integrated Care Systems (ICS). our lifetimes. Boundaries have have dementia, and how insulting some
There are, however, no changed, responsibilities have misguided comments can be:
proposals to integrate NHS and changed, activities have
“No two days and no two people are
local authority social care changed, and funding
identical…Because there is no one true
budgets. This means that there arrangements turned upside
representation of dementia. It is a progressive condition, which
will continue to be unresolved down. Under the new
in my case is Alzheimer’s, the disease of the brain. And it can
difficulties in the care of people proposals, the key body we will
be tempting for people in their ignorance or naivety to think,
who need services from both have to get used to is our local
and indeed say, “You don’t look like you have dementia”. This
sectors, namely everybody with Integrated Care System (ICS);
is both distasteful and insulting. I wonder, would someone with
dementia. these have already begun to be
cancer face the same question? I’m sure they would not.”
People with dementia need set up, in some areas in rather
the same skill mix in the people shadowy form. And thirdly, James McKillop has some sound
looking after them whether they One of their roles is to work in advice for conference organisers who invite
are in hospital, in care homes or partnership with other bodies people like him to give presentations:
receiving domiciliary care at like local authorities.
“A lot of people diagnosed with dementia have
home. There is only one radical Something similar exists in
never spoken in public in their life, so it is difficult.
way to solve this problem. It is learning disability services,
What has happened to me on a couple of occasions was even
for the NHS and local authority which have been used to
worse. I was told what I wanted to talk about, so I did my
to commission services together Partnership Boards for many
presentation. I can’t remember anything, so I’ve got to read it.
from a single budget. years and have seen these as
So I did that, and then the night before I was asked to talk
Such an arrangement would good ways to consult and
about something different. So, I did that, and then next
only be possible if the communicate. It would be
morning when I went there, ‘oh, can you talk about this?’
geographical areas of ICSs were timely to talk to them about
That’s happened twice…So, people should give people with
co-terminous with one or more how they see partnership and
dementia who are presenting a wee bit more respect, and
local authorities. It would also what they have learned at local
understand they’re dealing with a problem. And if you’ve asked
allow local authority care level.
them to do something, let it go ahead – don’t change it at the
assistants to be redesignated as In my experience, these can
last minute.”
nursing/ health care assistants. be powerful bodies to shape
This would immediately strategies and commissioning, The Dementia Diaries project was started by On Our Radar and
improve recruitment, retention but they can be talking shops or is now part of DEEP, ‘The UK Network of Dementia Voices’,
of staff and possibilities for simple rubber stamping of with support from Innovations in Dementia. Find out more and
training and career progression. actions taken. So, watching out listen to the Dementia Diaries at www.dementiadiaries.org, or
Though a major step forward, for ICS is the first watchword – on Twitter @dementiatweets. For more information about DEEP,
pooling budgets, in itself, will and making contact, looking at visit www.dementiavoices.org.uk.
not solve the serious problem of their websites and talking to
Finally, are you – or do you know someone who is – living with
the underfunding of social care. key players. And if you are in an
dementia who may like to become a Diarist? We’re always
The Prime Minister says he will ICS, reaching out to key
looking to recruit more people, and it’s very simple to record
come forward with a bipartisan dementia care groups would be
your own reports. Or you may have ideas about using the
policy to achieve adequate wise and very likely enjoyable.
Diaries for research, media, education or other projects. If so,
funding by the end of 2021. If he Jill Manthorpe is professor of
do contact steve@myid.org.uk. Thank you for your support!
fulfils this promise, we can look social work at King’s College
forward to real improvements London
Vol 29 No 3 May/June 2021 The Journal of Dementia Care 9
Support for eating and
News in brief
NAO report: Public spending
watchdog the National Audit Office
(NAO) has criticised the government
drinking at end of life
for ineffective oversight arrangements
over social care and lacking a
clear strategy for developing
accommodation for adults with care
needs. In a report on the adult social
care market in England, the NAO
says short-term funding settlements
have hampered long-term planning,
A new booklet tells family carers what they need to know to help a
pointing out that 57% more over-65s person living with dementia who has eating and drinking difficulties
will require care in 2038 compared
with now. While promised towards the end of life. Bolanda ©arrado-Martín and colleagues
government proposals for social care
have been delayed by the pandemic, say why it is needed
P
it has committed to produce a
strategy by the end of the year. eople living with dementia in the early stages,
dementia often face eating 24 family carers, and 20
Contact sports investigated: and drinking difficulties professionals who offered
Links between contact sports and towards the end of life, which advice and help with eating
long-term brain injuries, including may include swallowing and drinking.
those resulting in dementia, are being problems (Arcand 2015), but People living with dementia
examined by a new parliamentary family and friends report a were unaware of the potential
inquiry. MPs on the Digital, Culture,
lack of information about end eating and drinking difficulties
Media and Sport Committee are
of life in general and nutrition that often appear in the later
leading a “concussion in sport”
inquiry, which will consider scientific and hydration in particular stages of dementia, while
evidence for connections between (Papachristou et al 2017). We family carers often had not
head trauma and dementia, and how have developed a booklet for known either and reported
any risks could be mitigated. “We will family carers which we believe having struggled for some time
look particularly at what role national will fill this gap. with them. Supported by the
governing bodies should be taking,” Anxious not to duplicate patient and public involvement
said committee chair Julian Knight. existing resources, we began group, we embarked on a co-
by mapping what was already design process with family
Saint Cecilia’s launches home
care: North Yorkshire care home
out there through Google and carers and professionals.
provider Saint Cecilia’s is branching out other websites suggested by professionals’ experiences of
into home care as it seeks to extend its members of our patient and supporting eating and drinking Developing the booklet
services across the area. The public involvement group and in hospitals or care homes and We recruited 18 volunteers to
Scarborough-based company, which other experts. Through this often discussed tube feeding. help our multi-disciplinary
has four care homes and a day care search we found 13 resources But the views of people with team develop the resource.
centre, said that home care would focusing to some extent on dementia at an earlier stage in These included former and
“complete the jigsaw” of services. “To eating and drinking towards the condition had not been current family carers, speech
survive and prosper in the current the end of life in dementia. explored, nor the experiences and language therapists, a GP,
economic climate, we believe that
These resources varied of families of those living at nurse specialists in dementia,
Saint Cecilia’s needs to be a certain
size and the addition of home care
widely in the amount of home towards the end of life. an occupational therapist,
goes towards achieving that aim,” said information and detail So, our booklet was ageriatrician and a geriatric
managing director Mike Padgham. provided, varying from four designed to meet the need for medicine registrar. Among the
pages to nearly 200 pages in a resource based on the nine carers included in
SCA founder retires: Erica Lockhart, length. Overall, they were evidence but also reflecting the co-design groups, five were
CEO of the Surrey Care Association general documents not views and experiences of white British and four were
(SCA), retired at the end of March after focussing on eating and people with dementia and non-white British.
48 years of service to the care industry,
drinking difficulties at the end their carers. We interviewed We met as two mixed
the last 35 years of which were
of life in dementia, not 20 people living with groups, twice for 90 minutes,
dedicated to improving care services
across the county. She helped found visually attractive (containing
the SCA in 2005 as a voice for plenty of text or only black
independent providers and said she and white ink), and not Main areas covered in the booklet
thought it was time for someone “new designed for a lay audience. It
a) Eating and drinking difficulties in dementia
and enthusiastic” to take up the role. was often unclear whether
“With social care in the spotlight like family carers had been b) When to flag up eating and drinking difficulties at the end of life,
never before, now is the time to take consulted while developing including strategies and “top tips”
advantage of that fact, to broaden our these resources.
horizons and help us continue to grow c) Feeding options when there are swallowing difficulties
and expand on the enhanced
recognition and appreciation for the
What was needed? d) Things to discuss with professionals in future appointments
vital work we do,” Lockhart said. SCA When we looked at the
e) Support for family carers
chair Simon Carter paid tribute to her research evidence (Barrado-
hard work in championing the cause Mart n et al 2020) we found f) Further resources, including results from the mapping exercise.
of care providers. studies had mostly focused on
10 The Journal of Dementia Care May/June 2021 Vol 29 No 3PERSPECTIVES
and held an additional presentation approaches,
workshop with GPs and including diagrams, quotes
primary care professionals in a from professionals, carers and
GP practice. After discussions people with dementia, top
at each meeting, the content of tips, flow charts, prompts and How digital care systems can
the booklet was developed
and refined. Between
visual images. It aims to be
both engaging and
help provide better dementia care
meetings, we talked further comprehensive with a ! Jonathan Papworth is the co-founder
with five other family carers professional design by our and director Person Centred Software,
who were members of the funder Marie Curie. a digital care technology company. By Jonathan
patient and public The booklet has been Papworth
According to projections, the number of
involvement group. designed as a free electronic
people with dementia in the UK was set
Despite aiming to involve resource in the first instance but
to soar to more than one million this year. Alzheimer’s Society has
people with dementia in the can also be downloaded and
said that one person develops dementia every three minutes.
co-design process, we found printed. Although it is
that those we spoke to in the primarily intended for family Due to the significant rise in cases, guidelines from the National
early stages did not want to carers, we hope that Institute for Health and Care Excellence say that “all health and
know more about potential professionals supporting social care professionals must be properly equipped to support
future eating and drinking people living with dementia people with dementia at every stage.” With about 70 per cent
difficulties. They would rather towards the end of life will find of people in care homes living with a dementia, residential care
focus on the present, where it useful too. settings have had to adapt.
most had not noticed major We welcome feedback on the
By utilising advances in agile and innovative technology, care
difficulties, and leave these booklet, which can be down-
environments have been able to implement software that
conversations to happen later loaded at: www.ucl.ac.uk/
enables staff to provide a more responsive and personalised
in their dementia journey if the psychiatry/nutrition !
quality of dementia care to improve residents’ quality of life.
need arose.
Digital systems have become more widely available to meet the
Some said that these Acknowledgements
demands of offering safe, comfortable environments for people
conversations should take This work was supported by
with any form of dementia.
place with carers, while others Marie Curie (grant number
accepted that their families MCRGS-20171219-8004). We By empowering staff with information on a person’s past life story,
would make decisions about thank participants in the hobbies and fears, they have the capability to draw upon it in
this matter on their behalf. For Nutri-Dem study for their crucial situations to help someone with dementia. For example, if
these reasons, it did not seem time and contributions and are a care home resident with dementia suffers with anxiety, there are
ethical to invite them to co- also grateful to members of digital tools that can provide information, such as that person’s
design sessions where Nutri-Dem’s patient and favourite poem, and can help calm them and aid reminiscence.
problems with eating and public involvement group.
It is now possible for new care staff to socially interact with a
drinking would be discussed.
References resident with dementia without first asking the individual to
Everyone taking part in the
Arcand M (2015) End-of-life issues in volunteer information about themselves. A simple click and
co-design process was invited
advanced dementia Part 2: scroll on a hand-held device can show staff what a dementia
to email us with further
management of poor nutritional resident’s regular routine is, what they like to talk about, what
feedback after the meetings, intake, dehydration, and pneumonia. makes them feel better if they are anxious or upset, what is
enabling us to improve the Canadian Family Physician 61(4) important to them, and so forth. Interactions naturally become
booklet still more. Finally, 337-341.
easier and more interactive for both parties and friendships are
we approached experts Barrado-Martín Y, Hatter L, Moore K,
fostered through trust.
individually to ensure the Sampson E et al (2020) Nutrition and
accuracy of clinical information hydration for people living with Furthermore, by creating a holistic resident profile that gives
and seek their endorsement. dementia near the end of life: A staff immediate insight into how best to support people with
qualitative systematic review.
dementia, they are also complying with the Care Quality
Journal of Advanced Nursing 77(2)
Key topics Commission’s Key Lines of Enquiry (KLOEs) such as: “Do staff
664-680.
During this study we
Papachristou I, Hickey G, Iliffe S know and respect the people they are caring for and
identified some key topics that (2017) Dementia informal caregiver supporting, including their preferences, personal histories,
would need to be covered in obtaining and engaging in food- backgrounds and potential?”
the booklet (see box). We used related information and support
Having a wealth of information at your fingertips that can
a mix of formats and services. Dementia 16(1) 108-118.
improve someone’s quality of life is a remarkable thing, and not
all that long ago was unachievable. Many care providers are
! Yolanda Barrado-Martín is research fellow and Pushpa Nair is clinical digitalising their care environments because they understand
research fellow, both at UCL Research Department of Primary Care and that care technology is built to help and support the caregiver
Population Health; Kanthee Anantapong is PhD student and Kirsten J. and receiver at a rate never achieved before.
Moore is principal research fellow, both at UCL Division of Psychiatry;
Christina H Smith is associate professor, UCL Division of Psychology and As cases of dementia continue to rise, so does our
Language Sciences, Greta Rait is professor, UCL Research Department of understanding and capability to cope with the growing
Primary Care and Population Health, Elizabeth L Sampson is professor, numbers through the utilisation of user-friendly, person-centred
UCL Division of Psychiatry, Jill Manthorpe is professor, King’s College technology. Profile-building software allows care staff to
London NIHR Policy Research Unit in Health & Social Care Workforce glimpse the lives of the person sitting in front of them and can
Research Unit and Nathan Davies is senior research fellow, UCL Research tell them what they need to know to provide better care.
Department of Primary Care and Population Health
Vol 29 No 3 May/June 2021 The Journal of Dementia Care 11I Have I told you
n the last month of my dad’s
life I visit him in his care
home in Wiltshire. The staff
here are great and he is
about my blackbird?
enjoying himself despite the
dementia he now has causing
some mild aggression and
swearing. When I sit with him
he tells me about the chats he
has with the staff, the jokes, Intensive Interaction is a communication approach attending primarily
the banter. That is his over-
riding experience of the care to an individual’s social and emotional needs. Jules McKim
he receives – the social illustrates it from a very personal perspective by describing
exchanges. On this particular
visit, however, he looks conversations with Helen and Frank, his own mum and dad
worried.
“I appear to be in learning disability, have she was weeding her front
California,” he says. developed dementia and garden, she turned and
A pause. I hear the wind moved into nursing homes. realised that the blackbird
outside, staff down the Staff and carers have found the must be seeing its reflection in
corridor, a call bell ringing. I approach really useful in the glass and was tapping at a
think: Gosh, he’s really lost the maintaining social interactions, mirror image of itself. This
plot now! I wait and not just for the person referred, fascinated and tickled my
think…connect don’t correct but for others in the home. It is mum. So now I may answer
(Hughes 2009). Maybe he feels this social – or “phatic” – with:
like he is in California? I communication that seems so “No, tell me?” or
wonder why. I back away from important for people’s “Blackbird, what about a
going too far and reinforcing emotional wellbeing (Hewett blackbird?” or perhaps with a
this delusion: Oh yes, so we et al 2019). I too have found it bit more honesty:
are, look out the window, you invaluable in maintaining “Yes, I remember something
can see giant redwood trees! connections with both my about that. Please tell me
With an attitude of curiosity, Jules’ father Frank parents right until the end. again.”
I explore: And then, of most
“California?” asked, quietly, Interaction. This approach Rehearsed and importance, really, genuinely
gently and affirmingly… aims to connect with people practised stories leaning into her story with
“Yes, perhaps Mollie will who have significant “Have I told you about my interest, both verbal and non-
visit. Her house is near here I communication difficulties blackbird?” My mum Helen verbal, smiling, nodding,
think…” and attend to their social and asks me this question every holding eye-contact, clarifying
He was thinking about his emotional needs by joining in time I visit her. How to details. Another repeated story
sister, Mollie, who does indeed or mirroring what they are respond to this!? She too has today: her tale of being
live in California. Perhaps he doing or saying (Nind & some mild dementia, or bombed in the war. This is
was thinking back to a time Hewett 2005). “memory problems” as she more detailed, emotionally
when he had visited her and There has been some prefers to call it. Inside I may complex and long-standing of
was, in his mind, literally in research and articles on the well be experiencing turmoil course. What I find fascinating
California. Perhaps he was use of Intensive Interaction or a sort of “oh gosh not about this story is that there
hoping that he would see her with people with dementia again” kind of feeling. Part of are occasional new details that
again before he died. He (Harris & Wolverson 2014) and me wants to run from the come out when she re-tells it.
didn’t, but this conversation it forms the basis of “adaptive room screaming “shut up She has said to me recently
allowed us some time to think interaction” (Astell & Ellis, about the stupid blackbird!! that her old memories are
about her, talk about her, for 2011). Imitation is part of the Yes, you’ve told me – you’ve stronger and more vivid than
him to share memories and essence of our human told me a hundred times or they used to be: “It’s almost
stories of his beloved little interactions (Astell & Ellis, more!” like I’m there again!”
sister. I am so pleased I 2006); indeed, didn’t Oscar But she is my mum, she has
responded with a one-word Wilde say: “Imitation is the dementia, she wants to engage Moments of deep
interested answer and that the sincerest form of flattery.” But with me and this a rehearsed connection
starting point was that one really, it is a sort of modified and practised story of some A few months before the
word that he said. imitation, speaking the interest – to her and me (more pandemic, when we lived
person’s “language” by interesting the first time to be those pre-pandemic times,
Simply sharing joining in with what they can completely honest!). Every unaware of what was coming,
This article is written from a still do or say and taking it morning at the same time a unaware of the depth of
very personal perspective. It is from there, without blackbird comes and taps on connections we had and
not a description of formal expectations or goals other her glass front door. She can
research. I work with people than simply sharing human tell it is the same blackbird and ! Jules McKim is Intensive
with learning disabilities using companionship. it arrives at pretty much Interaction specialist care
a communication approach Several of the people on my exactly the same time. coordinator at Oxford Health NHS
known as Intensive caseload, in addition to a After some months, when Foundation Trust.
12 The Journal of Dementia Care May/June 2021 Vol 29 No 3enjoyed, I was over at my
mum’s on one of my regular
weekly visits. We enjoyed a
meal together, Helen not
eating much. Her appetite got
less and less, but she always
kept her hunger for puddings!
We had a typical rather
stilted conversation, going to reassure, and also as it’s
over some of the same topics, true, especially during her
with pauses from Helen and current state of fluid
filling in the missing words awareness, presence and
from me. One of the beauties reality. If she is in
of repetition is that this Helen 4 above and (right) in Pembrokeshire with this
strategy of filling in the gaps moments of connection with doctor, why should I not also
was so much easier – I knew her son Jules be there with her?
the script! I often felt that these takes in her room. There seem We listen together to the
conversations made us both There are two Helens now. to be at least three stages to her sounds of the hot water
painfully aware of our This is a little problematic as rising up and becoming aware system… “Listen!” she says,
different communication they can’t be in the same place of her surroundings. She is “Swish! It sounds like the
competencies. at the same time. With her eyes amazed each time – “I’m here! sea!”, waves rushing up and
We moved to the comfy shut, my Helen goes inward, How odd! I haven’t been here down a pebbly beach,
chairs for pudding. Helen’s becomes the other Helen, her in ages!” Up from the depths, inhalations and exhalations,
favourite were the little pots inner Helen, and drifts away gasping a little, and by degrees rising and falling, coming and
from Waitrose – cappuccino into memories and dreams. At she comes back into her here going. We’re sat on Renny Slip
mousse or lemon mousse as times she has been in London, and now body, sitting up Beach in Pembrokeshire
we had this evening. After a being seen by the very best straight, remembering her watching the waves slide
few mouthfuls, she licked her doctors who were “appalled aches and pains, the need to through the kelp, parting and
lips and vocalised – by how unwell she had been”; use the loo, feelings of hunger. combing it like mermaid’s hair.
“mmmmm.” I copied, more or at other times she has been in When I was a kid, we used to
less exactly the same Pembrokeshire enjoying Communication through spend all day as a family on
“mmmmm.” She laughed and respite and recovery by the the barriers this beach, sunbathing,
said “mmmmm” again, I sea. When she’s away she can’t We’re talking round corners, swimming, Helen singing
copied but extended and come back and refuses all through screens, through Amazing Grace to the seals.
added in an upward tone at attempts by us and the carers masks, wearing invisible That feels like a lifetime ago.
the end like a question: to care for the Helen we can smiles, dazzled by reflected Now, I repeat “Swish” back to
“mmmmmmmmm?” see and hear. light off windows and our her, we squeeze each other’s
She laughed out loud, looked inability to understand hands back and forth, tactile
up at me, we made eye-contact, Watery depths of FaceTime, taking up the worst turn-taking that says it all,
her eyes were sparkling. At consciousness positions for effective with not a word exchanged. !
that moment, we were equal, Talking with her now is like communication. I’m standing
our communication skills, fishing. I throw a fly on to the in the flowerbed, leaning References
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meaning and enjoyment were surface and aim to tempt her through her window, hanging
function of imitation in severe
back on the same page, there up from the depths. I riffle the over her right shoulder,
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people or places. It was the last crafted questions, non-verbal holding her hand with an Interaction: a new approach to
moment of deep connection we exhalations and affirmations awkward grip, using touch communication. Journal of
had. This is communication! It and words repeated from her but worried at the same time Dementia Care 19(3) 24-26.
wasn’t sharing news or facts monologue. The line attaching about that touch. Damn Harris C, Wolverson E (2014)
and figures or even wants or my fishing rod to the fly is coronavirus! Intensive Interaction: to build
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Dementia Care 22(6) 27-30.
enjoyment, that sharing of Pull too tight and it will snap; It feels like I am a storehouse
Hewett D, Calveley J, McKim J,
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puddings with my mum! unbreathable air; instead, I puzzle, offering just the right focused parenting. London: WW
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moments of connection, and laughter and surface here!” she says.
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possible. She slowly opens her eyes, I’m still with you” I say – both
Vol 29 No 3 May/June 2021 The Journal of Dementia Care 13You can also read
