Moving in and out of extra care housing - the possibilities and practicalities for people living with dementia
Housing with care and support for people living with dementia is a hot topic. What is the best option, and when should a person living with dementia move from their own home to one where there is more support? There is no silver bullet – every person is different. But over the years some lessons have been learned.
Townsend’s (1962) seminal study of a wide range of different types of accommodation and institutions provided insight into the life of those living in the institutions, why they entered the homes and the adequacy of the services provided. The report tentatively defined ‘quality' to include physical facilities, staffing, services, means of occupation, freedom in daily life, and social provision, and suggested that it would be helpful to increase the amount of ‘sheltered’ housing available. Those issues remain as relevant to making choices about the quality of accommodation and care today as they did over half a century ago.
The quality of extra care and its suitability for people with dementia grew in importance for me when my professional and personal lives converged. I was responsible for procuring and developing accommodation with care and support for people with and without dementia in a large local authority. The authority’s strategy was reminiscent of Townsend’s recommendations; it placed a high priority on enabling people to stay in their own home, whilst offering an opportunity for that home to be in a more supported environment, such as extra care or a specialist residential and community care centre designed specifically for people with dementia.
It became apparent that an increasing number of people living with dementia were moving into generic models of extra care, and more people were developing dementia after they had moved into extra care. My attention was drawn to how far the design of the environment could help or hinder people with dementia to live well in extra care, but that there were also other factors at play. At the same time my father had not long been diagnosed with dementia and my thoughts turned to what future care and support needs he might have, and if he could no longer manage at home, when might be a good time to move, and where to?
Extra care housing is still relatively new, and the concept of a community scheme with communal facilities and a group of flats with increasing levels of round the clock support to help those living with dementia to be as independent as possible is still not fully understood. I have been privileged to be able to research the lived experiences of those living in and working in extra care. Together we considered the combined effect of the design of the care environment, the ease with which people with dementia can become part of the social world of the extra care community, and the organisational arrangements to support people with a good quality joined up service across multiple agencies.
Some key messages came out of the research:
People with dementia can and do live well in extra care housing, but it is not appropriate for everyone.
What mattered to residents, staff and managers was being clear what extra care housing is (and is not), which includes having support in place for people to live as independently as possible in a well-supported community. Having person-centred and flexible but consistent care was essential.
A complex interaction between the social environment, the spatial design of the scheme, and organisational structure was found to be critical to how an extra care community functions. That was especially important for people living with dementia.
Operators of extra care housing often have complex partnership arrangements. They can better keep older people and residents at the heart of their service, and better manage the complex interactions in the service if they adopt a shared approach to quality and operational excellence.
In particular, there were important issues to take into account when considering whether to move into extra care housing; issues for people living with dementia, their family and carers, and the professionals supporting them. The success of moving into extra care housing can greatly influence how easily someone with dementia can adapt as their dementia journey progresses, and can influence whether or not they will be able to remain in extra care or need to move. Getting these subjects high on the agenda of those who design, plan, and operate extra care schemes is crucial in moving forward our shared understanding of what works well for people with dementia. I am looking forward to joining the International Masterclass on Dementia Care Design and Ageing at Stirling University to be part of the conversation.
~ Dr Katey Twyford, University of Sheffield
Join us at the International Masterclass on 14 + 15 May to hear from Dr Katey Twyford and other internationally respected guests.
Townsend, P., 1962. The Last Refuge. London: Routledge and Kegan Paul.