Transcript Shared Lives and dementia

Shared Lives and dementia:
A new type of Short Break service
Rachael Litherland
Innovations in
Dementia
Jane Bell
Shared Lives
South West
Shared Lives South West and
Innovations in Dementia
• Shared Lives South West is a charity
working in SW England, supporting
300+ people through 250 Shared Lives
carer households.
www.sharedlivessw.org.uk
• Innovations In Dementia is a national
community interest company working
on positive projects with people with
dementia
www.myid.org.uk
Dementia:
• Is a progressive condition which can cause:
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Problems with memory
Problems with everyday tasks, like handling money.
Problems with communication
Problems with perception
• Affects everyone differently. No two people with
dementia are the same.
• Several diseases and conditions can cause dementia
including Alzheimer’s and vascular illness.
• Currently affects some 800,000 people in the UK.
Shared Lives is…..
• A personalised community based type of
support with accommodation
• Delivered by approved carers who are part of
a Shared Lives scheme
• The service shares the home and family life of
the Shared Lives carer
• Can be long term, short breaks and day time
support and can help people access
community resources and services
Why a need for Shared Lives?
• Lack of appropriate short break services
documented and highlighted as an unmet need in
all policies and reviews of carers needs
• Better breaks for carers and support to live well
with dementia part of the national dementia
strategy
• Shared Lives has a lot of the features that carers
and pwd have stated is missing from available
services like residential services
• Clear interest and potential from within Shared
Lives sector
National dementia and
Shared Lives project
• A joint project between Shared Lives South West and
Innovations in Dementia looking at how Shared Lives
services might support people with dementia and their
families and how such services could be developed across
the UK
• Activities:
• Evaluating Shared Lives from point of view of the person with
dementia, their family carers, Shared Lives carers and statutory
authorities
• Producing training materials and sharing good practice and
experience across all Shared Lives schemes
• Identifying barriers to development and stimulating
development of the service within the Shared Lives and
dementia world
Findings: people with dementia
and their family carers
• Tracked 29 people with dementia who used Shared Lives services in 5
locations over 18 months, using questionnaires
• Key features for people with dementia: “opportunities for getting
out”, “having new experiences”, ‘indulging passions”, “giving their
carer a break”
• Key features for carers: “rest and relaxation confident that care is
high quality and individualised”; “satisfied that person with
dementia is fulfilled, stimulated, included and has a life of their
own in a ‘home from home”
• Where it didn’t work this was usually due to inappropriate referral or
inaccurate needs assessment; in long standing placements, health
deterioration often brought a service to an end
• Feedback was positive in over 90% of cases, even where it had
broken down
Pat and Roger
Findings: Shared Lives schemes
• No different in many respects
• Lack of familiarity/suspicion of the model
• Lack of referrals/ inappropriate or too late
referrals
• Funding issues
• Lack of appropriate Shared Lives carers at the
right time in the right place with the right skills
• Unpredictability of dementia – more difficult,
higher risk of breakdown
• Knowledge of the schemes and scheme staff
Expanding a scheme to meet the
needs of people with dementia
• Explaining the model to people who are
unfamiliar with it
• Up front investment to create new capacity
• Recruiting and training carers
• Increasing skills of staff (and approval panel)
• Funding and pricing
• Short breaks versus long term
• On call and risk of breakdown
Outcomes and conclusions
• The model has very positive outcomes for carers and
people with dementia. There is a demand for the
service.
• Very close fit with all policy drivers.
• Knowledge and confidence in the model is currently
low amongst carers and care authorities.
• Barriers around early diagnosis/intervention and
funding streams and commissioning of services.
• Requires investment in Shared Lives to meet demand
for the service, but investment requires evidence of
cost/benefit.
• Not going to happen on its own…….
What happens next?
• Ongoing work
– PSSRU
– Shared Lives Plus
– SW wide development
– local schemes – East Midlands
• Practical outcomes from the project
• Investment into Shared Lives schemes
• Dementia world needs to engage with Shared
Lives