Presentation at Making Research Count Event on Dementia

1. Support for carers of
people with dementia
Jo Moriarty

2. Outline
What support do people need?
What helps?
Specific types of carer
Discussion
28 March 2014Messages from Research
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3. Presentation draws on
• Mixed method study of
social care support for
family carers
• Funded by NIHR SSCR
• Interviews with carers,
carers’ workers,
commissioners, and
voluntary organisations
and survey
• Other research
• Large body of work
• BUT need to consider
applicability of findings
to UK
• Evidence mixed in
terms of quality
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4. Just over 1 in 10 carers care for
someone with dementia
0
1000000
2000000
3000000
4000000
5000000
6000000
7000000
Carers in UK Carers of people with dementia
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5. Some estimates
£119
billion
£8
billion
£108.9
billion
Amount carers save
UK economy
Amount spent on
NHS 2012-2013
Amount carers of
people with
dementia save UK
economy28 March 2014Messages from Research
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6. Why it’s important
• High proportion of studies of carers are about
studies carers of people with dementia
• People with dementia are at increased risk of
moving into long term care
• Some, but not all, carers experience difficulties in
caring
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7. US study suggested why
• Compared with other carers:
• Did more hours of physical caring
each week
• More likely to report financial,
social, emotional strain (Ory et
al, 1999)
• Doesn’t mean other types of
carer DON’T experience
difficulties
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Image from Dementia Survival Guide

8. Young onset dementia
• Irish study suggested
that carers of people
with young onset
dementia
experienced more
difficulties (Freyne
et al, 1999)
• Probably because
many issues
accentuated
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http://www.youngdementiauk.org/our-services-oxfordshire

9. Information
Different types of information needed
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10. Variable experiences of
screening and diagnosis
• Need to consider existing
research
• Almost everyone does
want to be told
• Confusion about how long
process would take
• Want individually tailored
information in terms of
amount, content and
variety
• Staggered over time
(Abley et al, 2013)
The Guardian, 20 February 2014
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11. Implications for social care
• Care Bill sets out new responsibilities for local
councils to provide information about support
available locally
• Key advantage of earlier identification is to
help people plan
• Finances
• Advance care planning
• Makes it easier for people to decide on social care
support
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12. “
”
I think it’s very confusing for carers,
especially if somebody’s just been diagnosed
with dementia. Where does the carer go for
support? Where can they get respite? Where
can they find advice and information about
finances? So I think yeah, there are things
that could be improved a lot
VOL06
Wanted better quality information
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13. Impact on social support
Effects on relationship with person cared for
Psychological strain
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14. “
”
My mother’s condition means she is living
more in the past than the present most days
and is unable to remember what I tell her or
what is planned for the day. This makes some
days very lonely and also frustrating as I
repeat for the tenth time what I have
planned for dinner. But she is also sometimes
a complete joy
CARER20
Can be lonely
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15. Impact on carers’ psychological
health
• NUMEROUS studies have shown that between a
quarter to a half of carers of people with
dementia experience psychological stress
• Linked to behaviour problems
• Physical health
• Feeling caring is too much
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16. START study
• Jill mentioned this study this morning. Based
on US course for carers
• Eight sessions
• Dementia
• Carer stress
• Where to get emotional support
• Managing behaviour
• Relaxation
• Carers practised at home (Livingston et al, 2013,
Knapp et al, 2013)
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17. Implications for social care
• Highlights importance of carer’s assessments
• Not an ‘add on’ or tick box process
• Research shows many carers are unaware of
rights to an assessment or even if they have
been assessed
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18. “
”
They make a point of knowing when the
carer's birthday is, so you get a birthday card
from your mum … and Christmas … they take
a photograph of them during the year, when
they're doing some activity. So they make a
Christmas card and put her photograph in it,
and get her to sign it, which she can just
about do
CARER07
Sometimes little things make a
difference
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19. “
”
That’s things like, for instance the way it
runs [here] is that we have it’s six week
course, twice a year, free. We have different
speakers come each week to talk about
things from basic dementia awareness, to
benefits, to Power of Attorney
VOL16
Consider and review existing courses
for carers
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20. Practical help
Help with practical aspects of care
Equipment
Assistive technology
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21. “
”
What people need is some time off.
And they’ve said that repeatedly and
loudly. They want to get away from it
for just a couple of hours, four hours,
a week. Just to get their head out of
the situation. Somebody described it
to me as being in that zone. You need
to get out of that zone
WORKER18
Getting a break
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22. Joint interventions
• Effectiveness of joint
reminiscence groups
for carers and people
with dementia
evaluated by Woods
et al (2013)
• Carers became more
stressed
• Wondered if joint
interventions always
help
28 March 2014Messages from Research
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Dementia café Market Harborough

23. “
”
One carer, he didn’t know how to
actually put on his wife’s tights so one
of our support workers showed him,
demonstrated how you put on a pair of
tights so it was [helpful] when his wife
could no longer dress
VOL06
‘Taken for granted’ assumptions
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24. An unmentionable topic
• Very little evidence
on what helps for
carers and what sort
of advice they are
given (Drennan et al,
2013)
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Somerset Partnership NHS Foundation Trust

25. Assistive technology
• Review suggested that
we need more
information on cost
effectiveness (Bowes
et al, 2013)
• Some promising
options (medication
reminders) but studies
not just for dementia
• US systematic review
also commented on
research quality
(Godwin et al, 2013)
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Image from At Dementia

26. Carers from black and minority
ethnic groups
Increase in numbers
Some issues faced by carers
Limitations of research
But examples of effective support do exist
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27. All Party Parliamentary Group
Inquiry into experiences of BAME
communities
• Members drawn from
both Houses
• All political parties
• Spoke to a range of
people
• People with dementia
& families
• Providers and
practitioners
• Policymakers
• Researchers
• Launched July 2013
21/11/2013Westminster Briefing: building dementia friendly communities
27

28. Projected increase in numbers
of BAME people with dementia
2013
2026
2051
0
50000
100000
150000
200000
25000
50000
172000
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29. Population ageing
• Estimated seven fold increase in numbers of
BAME older people with dementia compared
with two fold increase in population as a
whole
• Increases vary within different communities
• Proportionally larger rises in White Other, Asian
Pakistani, Asian Bangladeshi groups
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30. Should we tailor interventions
differently?
• US research shows
differences in
responses from
carers from different
ethnic groups
• BUT not reflected in
tailored
interventions
(Napoles et al 2010)
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31. Local developments
• Outreach workers
(Moriarty, 2013)
• Specific services
• Small scale
evaluations
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32. Lesbian, gay, bisexual and
transgender carers
• Neglect of LGBT
identities in caring
(Price, 2008)
• Issues about ‘coming
out’
• Stereotyping and
prejudice
• No research as yet on
effects of equalities
legislation and civil
partnerships
Kent Social Work
32
Image from Alzheimer’s Society website
15 May 2013

33. Young carers
• Most research on
young carers looks at
young carers of
people with a
physical disability
and/or a mental
health problem
• Impact of
grandchildren?
Children born in
later life?
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Image from Richmond Council

34. Discussion
• Does research influence commissioning?
• Many interventions are very small scale
• Need to recognise diversity of situations
• Any other ideas?
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35. Disclaimer
• This presentation includes independent
research funded by the NIHR School for Social
Care Research. The views expressed in
this presentation are those of the authors and
not necessarily those of the NIHR School for
Social Care Research or the Department of
Health/NIHR
Kent Social Work
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15 May 2013