SHARED LIVES - Family based community living for

people with dementia

Rachael Litherlandrachael@myid.org.uk

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

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

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

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

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

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

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

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

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

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

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

Early project results people 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)

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

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

To view the film

http://sharedlivessw.org.uk/videos/