1. Beyond the Front Door: the meaning of ‘home’ for people with dementia and carers
Foundations ‘Feeling at home’ seminar
21 February 2017
Ruth Eley and Eileen Gilbert

2. We’re going to talk about …
What we mean when we think about ‘home’
What people with dementia and carers told us
Personal stories
Implications for policy and practice
Our recommendations in relation to people with dementia facing potential transitions

3. The Project
Exploring the importance of ‘home’ to the identity of older people, particularly those with dementia
Department of Health funded project – Post-diagnostic care & support
‘Products’ – guidance, tools for providers in development
Project funded by DH as part of post-diagnostic care programme
Underpinning values:
Rights of people affected by dementia
Human connectedness matters
Having a sense of who you are is essential to wellbeing
Felling ‘at home’ contributes significantly to positive sense of identity

4. What do we mean by ‘home’?
‘Home is where you come in, handbag down, shoes off!’ (resident of Mazenod Court)
‘To be rooted is perhaps the most important and least recognised need of the human soul’ Simone Weil
‘Home is the one place where your own priorities hold sway’ (Gawande)
‘Home is where Dave is’ (Eileen Gilbert)

5. What about identity? Sense of self, of who we are
Life experiences have contributed to where and who we are
Older people continue to be active in constructing identity
Sense of self can easily be eroded in dementia

6. How we did the work Focus groups: sheltered housing schemes SURF group
African Elders
Somali Elders
Irish travelers
Key individuals
Housing providers workshop
Multi-agency workshop

7. What people told us
Connectedness -family, neighbours, friends, locality, place, memories
Personalisation/creativity of ‘home’, belongings
Locality – memories, familiarity
Cultural roots – place of birth, adopted domicile, both
Cultural expectations, activities, needs
Privacy, own personal space
Comfort, familiarity, emotional attachment
Feeling safe & secure
Clarity about available options

8. Home is… A physical place – house, street, neighbourhood, community
AND
People – spouse, partner, family, friends, neighbours

9. People wanted information…
Where will I get advice?
What options are available?
What is sheltered housing?
How do I find an architect who understands about dementia?
What is a disabled facilities grant?

10. Key factors in relation to a transition process
Transitions generally involve grieving for the loss of the old and readjusting to the new
Transitions often work best when they are predictable and approached intentionally
Transitions often work best when there is an understanding of the personal challenges that they represent

11. Julie & Phil’s story
Weighed up the options for staying put or moving – more urgent after Phil’s diagnosis
Local neighbourhood and friends important factor
Adapted home to create bathroom & living space for Phil
Had to find an architect!
Had financial resources to do it

12. Eileen and Dave’s story

13. Implications for policy and practice
Creating opportunities for people to discuss the importance of home
Post-diagnostic support
Information!
Roles of NHS & social care staff undertaking assessments, especially in crisis
Housing staff – smoothing transitions
Understanding each other’s roles
Commissioning for ‘home’

14. Our recommendations (1)
Include discussions about housing need in post-diagnostic support
Include in assessments
RSLs – review information about types of housing, expectations
RSLs – review processes
Bespoke training in dementia & what it means

15. Our recommendations (2)
‘Commissioning for home’
Include people with dementia & carers in strategy development & service design, including housing
Include housing in planning forums
Check compliance with Human Rights Act & Equalities Act – ensure people with dementia not inadvertently discriminated against

16. Any questions? E-mail: ruth@lifestorynetwork.org.uk
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