Support for carers of
people with dementia
Jo Moriarty
Outline
What support do people need?
What helps?
Specific types of carer
Discussion
28 March 2014Messages from Research
2
Presentation draws on
• Mixed method study of
social care support for
family carers
• Funded by NIHR SSCR
• Interviews wit...
Just over 1 in 10 carers care for
someone with dementia
0
1000000
2000000
3000000
4000000
5000000
6000000
7000000
Carers i...
Some estimates
£119
billion
£8
billion
£108.9
billion
Amount carers save
UK economy
Amount spent on
NHS 2012-2013
Amount c...
Why it’s important
• High proportion of studies of carers are about
studies carers of people with dementia
• People with d...
US study suggested why
• Compared with other carers:
• Did more hours of physical caring
each week
• More likely to report...
Young onset dementia
• Irish study suggested
that carers of people
with young onset
dementia
experienced more
difficulties...
Information
Different types of information needed
28 March 2014Messages from Research
9
Variable experiences of
screening and diagnosis
• Need to consider existing
research
• Almost everyone does
want to be tol...
Implications for social care
• Care Bill sets out new responsibilities for local
councils to provide information about sup...
“
”
I think it’s very confusing for carers,
especially if somebody’s just been diagnosed
with dementia. Where does the car...
Impact on social support
Effects on relationship with person cared for
Psychological strain
28 March 2014Messages from Res...
“
”
My mother’s condition means she is living
more in the past than the present most days
and is unable to remember what I...
Impact on carers’ psychological
health
• NUMEROUS studies have shown that between a
quarter to a half of carers of people ...
START study
• Jill mentioned this study this morning. Based
on US course for carers
• Eight sessions
• Dementia
• Carer st...
Implications for social care
• Highlights importance of carer’s assessments
• Not an ‘add on’ or tick box process
• Resear...
“
”
They make a point of knowing when the
carer's birthday is, so you get a birthday card
from your mum … and Christmas … ...
“
”
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 h...
Practical help
Help with practical aspects of care
Equipment
Assistive technology
28 March 2014Messages from Research
20
“
”
What people need is some time off.
And they’ve said that repeatedly and
loudly. They want to get away from it
for just...
Joint interventions
• Effectiveness of joint
reminiscence groups
for carers and people
with dementia
evaluated by Woods
et...
“
”
One carer, he didn’t know how to
actually put on his wife’s tights so one
of our support workers showed him,
demonstra...
An unmentionable topic
• Very little evidence
on what helps for
carers and what sort
of advice they are
given (Drennan et ...
Assistive technology
• Review suggested that
we need more
information on cost
effectiveness (Bowes
et al, 2013)
• Some pro...
Carers from black and minority
ethnic groups
Increase in numbers
Some issues faced by carers
Limitations of research
But e...
All Party Parliamentary Group
Inquiry into experiences of BAME
communities
• Members drawn from
both Houses
• All politica...
Projected increase in numbers
of BAME people with dementia
2013
2026
2051
0
50000
100000
150000
200000
25000
50000
172000
...
Population ageing
• Estimated seven fold increase in numbers of
BAME older people with dementia compared
with two fold inc...
Should we tailor interventions
differently?
• US research shows
differences in
responses from
carers from different
ethnic...
Local developments
• Outreach workers
(Moriarty, 2013)
• Specific services
• Small scale
evaluations
28 March 2014Messages...
Lesbian, gay, bisexual and
transgender carers
• Neglect of LGBT
identities in caring
(Price, 2008)
• Issues about ‘coming
...
Young carers
• Most research on
young carers looks at
young carers of
people with a
physical disability
and/or a mental
he...
Discussion
• Does research influence commissioning?
• Many interventions are very small scale
• Need to recognise diversit...
Disclaimer
• This presentation includes independent
research funded by the NIHR School for Social
Care Research. The views...
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Support for Carers of People with Dementia

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Support for Carers of People with Dementia

  1. 1. Support for carers of people with dementia Jo Moriarty
  2. 2. Outline What support do people need? What helps? Specific types of carer Discussion 28 March 2014Messages from Research 2
  3. 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 28 March 2014Messages from Research 3
  4. 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 28 March 2014Messages from Research 4
  5. 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 5
  6. 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 28 March 2014Messages from Research 6
  7. 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 28 March 2014Messages from Research 7 Image from Dementia Survival Guide
  8. 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 28 March 2014Messages from Research 8 http://www.youngdementiauk.org/our-services-oxfordshire
  9. 9. Information Different types of information needed 28 March 2014Messages from Research 9
  10. 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 28 March 2014Messages from Research 10
  11. 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 28 March 2014Messages from Research 11
  12. 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 28 March 2014Messages from Research 12
  13. 13. Impact on social support Effects on relationship with person cared for Psychological strain 28 March 2014Messages from Research 13
  14. 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 28 March 2014Messages from Research 14
  15. 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 28 March 2014Messages from Research 15
  16. 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) 28 March 2014Messages from Research 16
  17. 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 28 March 2014Messages from Research 17
  18. 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 28 March 2014Messages from Research 18
  19. 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 28 March 2014Messages from Research 19
  20. 20. Practical help Help with practical aspects of care Equipment Assistive technology 28 March 2014Messages from Research 20
  21. 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 28 March 2014Messages from Research 21
  22. 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 22 Dementia café Market Harborough
  23. 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 28 March 2014Messages from Research 23
  24. 24. An unmentionable topic • Very little evidence on what helps for carers and what sort of advice they are given (Drennan et al, 2013) 28 March 2014Messages from Research 24 Somerset Partnership NHS Foundation Trust
  25. 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) 28 March 2014Messages from Research 25 Image from At Dementia
  26. 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 28 March 2014Messages from Research 26
  27. 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. 28. Projected increase in numbers of BAME people with dementia 2013 2026 2051 0 50000 100000 150000 200000 25000 50000 172000 28 March 2014Messages from Research 28
  29. 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 28 March 2014Messages from Research 29
  30. 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) 28 March 2014Messages from Research 30
  31. 31. Local developments • Outreach workers (Moriarty, 2013) • Specific services • Small scale evaluations 28 March 2014Messages from Research 31
  32. 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. 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? 28 March 2014Messages from Research 33 Image from Richmond Council
  34. 34. Discussion • Does research influence commissioning? • Many interventions are very small scale • Need to recognise diversity of situations • Any other ideas? 28 March 2014Messages from Research 34
  35. 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 35 15 May 2013

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