Prevalence of Dementia in Extra Care Housing settings in the UK

This week’s blog post is written by Dr Julie Barrett, HDRC Research Coordinator. Over to Julie:

In my role as the Research Coordinator of the Housing and Dementia Research Consortium (HDRC) the question that I get asked the most is ‘What is the proportion of people living with dementia among the residents in extra care housing?’ Until now I have not been able to answer this question with any certainty, largely because comprehensive prevalence data across multiple housing providers had never been gathered. Estimates were available. A Personal Social Services Research Unit (PSSRU) study of those moving to extra care schemes found, on average, 37% had a form of cognitive impairment, including people with mild cognitive impairment as well as those with dementia (Darton et al., 2012). The study estimated that 3.1% of residents had severe cognitive impairment. The Alzheimer’s Society estimated that 8.1% of extra care housing residents are living with dementia (Prince et al, 2014). The authors noted a caution about this estimate as although it is above the level proposed by Darton et al (2012), it is well under what might be expected from an average population.

Recently, the HDRC has been able to provide figures for the prevalence of dementia in extra care housing in the UK by combining the data from a number of different sources, as described below.

Recent data from individual housing providers

Data on dementia prevalence is available from individual housing providers. In recent years (2017-2019), housing provider members of the HDRC have conducted their own in-house surveys of their extra care properties. The prevalence of residents living with dementia data from these surveys is given in the table below.

Recent data from HDRC research studies

In recent years, the HDRC has conducted various studies, which included online surveys of accommodation and care settings in the UK:

• In 2017, the HDRC and Association for Dementia Studies (ADS) conducted a study on green dementia care in accommodation and care settings (Evans et al., 2019).
• In 2018 the HDRC conducted a study to explore walking with purpose in purpose in extra care, retirement and domestic housing settings in the UK, along with the perceptions and responses of staff and family carers, in order to better understand and support residents living with dementia in such settings and to develop good practice guidelines (Barrett et al, 2020).
• In 2018 the HDRC conducted an online survey of the HDRC membership to understand the current state of the provisions for people with dementia within extra care settings in the UK (report in progress)

The surveys in these studies provide dementia prevalence data for extra care housing from multiple housing providers, as given in the table below.

Collating the recent data – what can we conclude?

The average percentage of residents living with diagnosed dementia in extra care housing, based on the multiple data sources above, is 16% and the average percentage living with suspected but undiagnosed / undeclared dementia is 7%, giving a combined total of 23%.

For context, when considering these prevalence figures it is useful to know that the average age of extra care housing residents (data provided by HDRC members in 2020) is 76 (range 75-79).

Despite some of the recent surveys above involving single housing providers and others involving multiple providers spread throughout the UK (conducted by the HDRC as part of larger studies), the findings across all the surveys are in close agreement, with a range of 14-19% of residents living with a diagnosis of dementia and 5-9% living with suspected / undiagnosed / undeclared dementia.

References and useful documents

Alzheimer’s Society (2017).  Dementia-friendly housing charter. London: Alzheimer’s Society.

Barrett, J. (2012). Provision for people with dementia within Housing with Care: Case studies from HDRC Steering Group Providers. HDRC report available at: https://housingdementiaresearch.files.wordpress.com/2012/07/report-on-provision-for-people-with-dementia_v1-6_jun2012.pdf

Barrett, J., Evans, S. and Pritchard-Wilkes, V. (2020), Understanding and supporting safe walking with purpose among people living with dementia in extra care, retirement and domestic housing, Housing, Care and Support, 23(2), 37-48.

Brooker, D. J., Argyle, E., and Clancy, D. (2009). Mental health needs of people living in extra care housing. Journal of Care Services Management, 3, 295–309

Darton, R., Bäumker, T., Callaghan, L., Holder, J., Netten, A. and Towers, A. (2012). The characteristics of residents in extra care housing and care homes in England. Health and Social Care in the Community, 20(1), 87-96

Evans, S., Barrett, J., Atkinson, T., Garabedian, C. and Russell, C. (2019) Connections With Nature For People Living With Dementia. Working with Older People. Available online at: https://www.emerald.com/insight/content/doi/10.1108/WWOP-01-2019-0003/full/html

Housing 21 (2017). Exploring Dementia in Housing: Extra Care. Intranet Survey Results. Internal Data.

Prince, M., Knapp, M., Guerchet, M., McCrone, P., Prina, M., Comas-Herrera, A., Wittenberg, R., Adelaja, B., Hu, B., King, D., Rehill, A. and Salimkumar, D. (2014). Dementia UK, second edition. London,UK: Alzheimer’s Society.

Thraves, L. (2016). Fix Dementia Care: NHS and care homes. London,UK: Alzheimer’s Society.

Connect with the HDRC on twitter @HousingDementia

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