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SHARED LIVES - Family based community living for people with dementia

SHARED LIVES - Family based community living for people with dementia. Rachael Litherland rachael@myid.org.uk. The need for alternative models of care. Few alternatives to planned periods of care delivered in a care home environment

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SHARED LIVES - Family based community living for people with dementia

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  1. SHARED LIVES - Family based community living for people with dementia Rachael Litherland rachael@myid.org.uk

  2. The need for alternative models of care • Few alternatives to planned periods of care delivered in a care home environment • Outcomes tend to be carer focused rather than person with dementia focused • Consumer choice and personalisation agenda • People with dementia and their carers want to stay at home for as long as possible

  3. Policy context Business case National Dementia Strategy for England (2009) • Highlights the need for more choice, taking into account preferences and family circumstances • Sube Banerjee et al: “Clinical and cost effectiveness of services for early diagnosis and intervention in dementia” • Outcomes desired by people with dementia and their carers – staying at home longer with care from family carer

  4. Policy context • National dementia strategy for England (2009) • NICE Quality standard for dementia care – phase 4 G • Commissioning framework and commissioning pack • Support Stay Save – Alzheimer’s Society • Carers Strategy

  5. What is Shared Lives? • Offers permanent or short breaks in the home of a ‘host’ family • Person with dementia is welcomed as a member of the family, sharing lives, interests, experiences • The family are checked, approved, trained and monitored by a Shared Lives scheme • There are 150+ Shared Lives schemes across England

  6. Types of Shared Lives service for people with dementia • Day support in Shared Lives home • Day support in either/all of the Shared Lives home, service users home, community. • Overnight short breaks • Long term • Intermediate/resettlement care

  7. Costs of the service • Varies enormously across the UK • Many costings based on an learning disability model • Depends on level of support need • Cost of other comparable service (residential or day support) • Reasonable remuneration to the Shared Lives carer, training, cost of support

  8. National Shared Lives dementia project • A 3 year programme 2010 – 2013 • Funded by Esmee Fairbairn Foundation • A partnership between Innovations in Dementia and Shared Lives South West

  9. Project objectives • Collect evidence – about using Shared Lives • Collate and share good practice between Shared Lives schemes • Develop training materials • Cost benefit analysis for commissioners of Shared Lives

  10. Project activities (1) Good practice days to encourage generic Shared Lives schemes to ‘think dementia’ • creativity and risk • learning disability and dementia • the argument for commissioning • who to make friends with in the dementia world

  11. Project activities (2) • Training programme (based on SCIE e-learning) for Shared Lives schemes • Train the trainer courses – to equip schemes to train host families • Training pack • Film of a Shared Lives placement • Commissioning pack

  12. Tracking outcomes • Working with 5 Shared Lives schemes to track outcomes from perspective of: Shared Lives scheme, person with dementia, carer, host family, commissioner • Sites are Devon, Cornwall, Dorset, Lincolnshire and East Sussex • Beginning work with 3 local authority commissioners of service to explore how Shared Lives can be increased for people with dementia

  13. Early project resultspeople with dementia and carers • Perceived as a positive alternative to residential care “It allows me to indulge my passion for photography. It relieves boredom and I see things I would not get to see. It allows my wife to have a social life too.”(person with dementia) “Because for me, relating to mum rather than the dementia was very important –so being with a family rather than a carer reinforced normality.”(family carer)

  14. Issues for host families • Dementia is often not a difficulty – it is the accompanying health needs • The model encourages person centred care • Families need to be realistic and respond well to training and problem solving • Families have found it a positive experience – learning new skills, supporting people to take risks and lead more fulfilled lives

  15. Issues for Shared Lives schemes • Funding, especially for early intervention • Encouraging carers to take a break earlier in their journey • Negative associations about respite • Lack of local service knowledge about Shared Lives • Professional resistance to offering choice • Disconnect between policy drivers and disconnect on the ground

  16. http://sharedlivessw.org.uk/videos/ To view the film

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