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

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

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

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)

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

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

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

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

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?

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

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

Eileen and Dave’s story

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’

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

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

Any questions? E-mail: ruth@lifestorynetwork.org.uk Mobile: 07786 979997 Twitter: @Ruth_LSN