Dementia: Quality of Care 2016

1. From Strength to Strength –
Family Carers Matter Too
April 2016
Jean Tottie
Chair
The Life Story Network
www.lifestorynetwork.org.uk© LSN (CIC) 2016

2. What I’m Going to Talk About…..
• Why focus on carers?
• Recognising the diversity of need across different groups of
carers
• ‘Family Carers Matter’
• tide – together in dementia everyday
• Questions and discussion
2© LSN (CIC) 2016

3. A Bit About The Life Story Network CIC
• We are a small social enterprise community interest company,
based in Liverpool.
• We promote life story work and narrative approaches as ways
of helping keep people connected with their families, friends
and communities.
• We run the ‘Family Carers Matter’ programme for carers of
people with dementia, as well as training for health, social
care, housing, transport and local authority staff.
• We are hosting the new tide involvement network for carers
of people with dementia.
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4. ‘A diagnosis of dementia is given not just to one person – it is
given to a spouse, a partner, a child and the extended family’
Alistair Burns
Providing timely support, information and respite can make the difference
between swimming and drowning
© LSN (CIC) 2016 4

5. Why Focus on Family Carers of People
with Dementia?
• 850,000 people living with dementia in the UK
and 700,000 friends and family are caring for a
person with dementia (Alzheimers Research
2015).
• They’re the biggest workforce in dementia
care –providing 44% of the total cost of
care.
• They save the public purse about £11b
per year.
• They face particular difficulties due to the
complex, unpredictable and progressive
nature of the illness.
• 69% reported that caring had a negative
impact on their physical health.
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6. Diverse Needs of Carers - BAME
• At times we talk about ‘Hard to Reach
Communities’ or should we reframe to ‘Easy
to Ignore Communities.’
• BAME refers to “all people of minority ethnic
status in England. It does not only refer to the
skin colour but to people of all groups who
may experience discrimination and
disadvantage, such as those of Irish origin,
those of Mediterranean origin and Eastern
European origin.” (DH 2005)
• 25,000 people currently living with dementia
from BAME communities, rising to 50,000 by
2026 and 172,000 by 2051 (Fontaine et al
2016).
• Early onset dementia and vascular dementia
most prevalent in these communities
associated with hypertension and diabetes.
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7. Diverse Needs of Carers - BAME
• The impact of caring for someone in the family with
dementia is dependent on:
– Cultural norms,
– Pre-diagnosis family relationships / dynamics,
– Patterns of migration,
– Class & Caste status pre and post migration
– Whether the carer is a spouse, adult child (male / female)
or grandchild
– Knowledge and ability with English language
• Important not to make assumptions -‘They look after
their own, don’t they’ report in 1998 – challenged
myths around caring as part of an extended family.
• Carers from BAME communities currently
underrepresented in dementia services (Moriarty et
al 2011).
• Potential for Asian women to feel ‘trapped and
powerless due to norms about gendered roles in
their communities’ (Mand 2006).
7© LSN (CIC) 2016

8. I didn’t come out to go back in the closet!- LGBT
• Estimated that LGBT community is between
7.5% and 10% of the total population (Aspinall
2009).
• Estimated for Trans people in UK vary widely
from 65,000 to 300,000 (ONS 2009).
• Lack of focus on the needs of LGBT and Trans
people caring for people with dementia is a
reflection on lack of research not lack of need!
• Needs of LGBT carers of people living with
dementia need support, love, respect and
dignity & their voices heard.
• Lightly to experience stigma, discrimination and
marginalisation with many having vivid
memories of pre-stonewall, when compelled to
conceal their sexuality (issues of psychological
and emotional distress).
• Both carer and person living with dementia who
are in an LGBT relationship suffer ‘triple
jeopardy’ – LGBT identify, cognitive impairment
and ageing (McGovern 2014).
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10. • Uniting Carers - Dementia UK (UC) demonstrated:
- Value of a network for peer support
- Value of development programme to enable carers to become
involved
• Big gap when UC was closed
• Carers’ Call to Action (CC2A)
• Appetite for a new network
• Initial seed funding from Dept. of Health for transition from CC2A
Why Develop tide?
10© LSN (CIC) 2016

11. © LSN (CIC) 2016 11
The Vision and Mission of tide

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Showcasing the Values of tide

13. • Engaging carers
• Gathering support
• Establishing key partnerships
• Building the infrastructure
• Delivering the Carers Development programme
• Establishing local tide hubs
Stages of Developing tide
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14. Carers’ Development Programme
From Grassroots Support to Influencing Strategic Development
Peer Support
Supporters
Recruitment
Research
Education
Training
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The Result…..

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This is…..

17. Thank You!
Contact Details
tide – together in dementia everyday
Web: www.tide.uk.net
E-mail: jean@lifetsorynetwork.org.uk
Twitter: @tide_carers
17© LSN (CIC) 2016