Support for Carers of People with Dementia

Support for carers of people with dementia

Jo Moriarty

Messages from Research

2Outline

What support do people need?

What helps?

Specific types of carer

Discussion

28 March 2014


3Presentation 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 2014


4Just over 1 in 10 carers care for someone with dementia

Carers in UK Carers of people with dementia0

1000000

2000000

3000000

4000000

5000000

6000000

7000000

28 March 2014


5Some 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 2014


6Why 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 2014


7US 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 2014

Image from Dementia Survival Guide


8Young 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 2014

http://www.youngdementiauk.org/our-services-oxfordshire


9Information

Different types of information needed

28 March 2014


10Variable 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 201428 March 2014


11Implications 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 2014


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 2014


13Impact 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

28 March 2014


15Impact 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 2014


16START 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 2014


17Implications 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

28 March 2014


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 2014


20Practical 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

28 March 2014


22Joint 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 2014

Dementia café Market Harborough

Jo Moriarty


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 2014


24An unmentionable topic

• Very little evidence on what helps for carers and what sort of advice they are given (Drennan et al, 2013)

28 March 2014

Somerset Partnership NHS Foundation Trust


25Assistive 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 2014

Image from At Dementia


26Carers 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 2014

Westminster Briefing: building dementia friendly communities

27All 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 201321/11/2013


28Projected increase in numbers of BAME people with dementia

Series10

50000

100000

150000

200000

2013

2026

2051

25000

50000

172000

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29Population 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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30Should 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 2014


31Local developments

• Outreach workers (Moriarty, 2013)

• Specific services

• Small scale evaluations

28 March 2014

Kent Social Work

32Lesbian, 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

Image from Alzheimer’s Society website

15 May 2013


33Young 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 2014

Image from Richmond Council


34Discussion

• Does research influence commissioning?

• Many interventions are very small scale

• Need to recognise diversity of situations

• Any other ideas?

28 March 2014

Kent Social Work

35Disclaimer

• 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

15 May 2013

Support for Carers of People with Dementia

Healthcare

Transcript of Support for Carers of People with Dementia