This week’s blog was written by Dr Julie Barrett, Research Coordinator for the Housing and Dementia Research Consortium (HDRC). The HDRC has recently published a report from a study exploring the provisions, policies and procedures relating to people living with dementia in Extra Care Housing within the UK. You can find copies of the full report and summary report here, but Julie has provided a brief summary of the key points in this blog. Over to Julie:
Background
There is growing recognition of the need for housing that suits older people, including those living with dementia, and supports them to continue living in the community for as long as possible. This has recently been highlighted by the All-Party Parliamentary Group Inquiry report on housing and dementia. Two settings of this sort that have become increasingly popular since the early 1990s are Extra Care Housing (ECH) schemes and retirement villages. There has been much debate on whether these facilities provide a suitable environment and service to residents who have dementia. A variety of models and approaches exist regarding the provision of care for people living with dementia in such settings, but until now there is a little evidence as to what provisions are in place and ‘what works’ best. In order to answer these questions, the HDRC recently conducted an online survey to explore this.
Key findings from the survey
In terms of prevalence of dementia among residents, 16% were living with diagnosed dementia and 5% with suspected but undiagnosed/undeclared dementia (21% in total). This corresponds well with data from HDRC housing provider members and other HDRC studies. By combining the data from all these studies, we can confidently say that an average of 16% of ECH residents are living with diagnosed dementia and a further 7% with suspected but undiagnosed/undeclared dementia.
In terms of gender, 69% of residents living with dementia in the surveyed schemes were female and 31% were male. Sixty-nine percent of settings supported at least one couple where one partner already had a diagnosis of dementia on moving into the scheme/village. The majority of these couples live in two-bedroomed apartments, although a small portion may have had to take a one-bedroomed apartment. An even smaller portion may be denied entry due to lack of availability of two-bedroomed apartments.
Almost all of the settings surveyed had individual care plans and conducted risk assessments for residents living with dementia, however 20% of settings did not carry out individual assessments and reassessments. Reassessments for people living with dementia most often occurred at any time, if the individual’s needs had changed.
Ninety-four percent of respondents felt that their organisation was committed to supporting people living with dementia. The most common service provided specifically for people with dementia was information, advice and counselling, although this was only offered by just under half of the settings surveyed. Only 24% offered activities tailored for people living with dementia and 11% tailored facilities.
Forty-two percent of surveyed settings did not have any specific entry eligibility criteria stipulating who the scheme is suitable and/or not suitable for with reference to people living with dementia and 90% did not have formal exit criteria. The most common reasons for denying a person living with dementia entry into ECH settings and the most common reasons for residents living with dementia leaving the schemes and villages (excluding death) were similar. They related to a high level of need and risk or safety concerns (including walking with purpose) and the inability of the scheme to meet these needs and address the risks. Negative attitudes towards residents living with dementia are occasionally seen from other residents and the most common response to this was to provide dementia education/awareness training which was considered successful in reducing the negative attitudes.
According to managers, the most common reason for people living with dementia moving into ECH is safety and/or security. The most common positive outcome from such a move was social interaction/inclusion/friends/reduced loneliness or isolation. With reference to deprivation of liberty issues, just over a quarter of the ECH schemes and villages had residents who require continuous supervision and control, with an average of 18% such residents.
Just over half of respondents felt that the physical design of their ECH scheme supported people living with dementia, just under half felt that the design of the outdoor spaces supported people living with dementia, and just over half felt that the design of the building helps people living with dementia find their way around. Given the fact that 83% of the schemes surveyed were fully purpose-built, these figures are surprisingly low. The survey findings suggested that ease of orientation and wayfinding play an important part in the dementia-friendliness of a scheme. If designed well with dementia-friendly features, a scheme can help alleviate difficulties with orientation and wayfinding experienced by people living with dementia, but if designed poorly, residents living with dementia can become lost within a scheme.
A positive finding was that staff had received education/training in dementia awareness and care at virtually all of the ECH schemes. However, this was primarily received by management (96% of respondents) and the majority of care staff (86%) but only half of support staff (e.g. catering, cleaning, maintenance and hairdressers). Sixty-five percent of respondents felt that staff have sufficient understanding of the different needs of people living with dementia to support them effectively and have sufficient understanding and skills to work effectively with them and respond appropriately to the challenges these residents face. However, it is still concerning that not all respondents felt that this was the case.
The most common challenges for respondents related to accessing and interacting with external supporting services, issues with family (such as family intervention, family understanding/denial of dementia, family expectations of ECH living and lack of family involvement), lack of time and keeping people living with dementia safe. The most common successes related to maintaining/improving independence, increasing social inclusion/interaction/engagement and ensuring/improving wellbeing/quality of life. The most common desired changes were more time to spend with residents living with dementia and more suitable/tailored activities.
Recommendations
To better support people living with dementia in ECH, the following recommendations can be made, based on the findings of this study.
Providers of housing with care need to:
- Have specific policies to inform decisions about entry or exit for people living with dementia.
- Have individual care plans and conduct regular risk assessments for residents living with dementia.
- Challenge negative attitudes from other residents towards residents living with dementia; this can be addressed successfully with dementia awareness training sessions.
- Ensure all staff, including support staff, receive training on dementia awareness and support practices. Management, care staff and senior staff should receive more in-depth training on dementia care.
- Consider a specialist staff role dedicated to ensuring the wellbeing of residents living with dementia.
- Increase awareness and understanding of walking with purpose among staff. Provide training to address the issue of walking with purpose being seen as a problem and equip staff with strategies to manage walking with purpose.
- Improve design of the environment for people living with dementia to support orientation, wayfinding, walking with purpose, social interaction and meaningful activity. This includes ease of access to and design of outdoor spaces.
The relationship between the housing sector and external agencies needs to improve and there needs to be more effective partnership and joint working to ensure better support for people living with dementia in ECH.
For more information about this study, please see reports on the HDRC website. The full report of this research presents a comprehensive picture of support available to people living with dementia in ECH settings, which will enable housing providers to assess their current schemes within the wider context and make informed decisions about how best to provide for people living with dementia. It will also provide an essential, informed platform from which to undertake targeted research to help shape future provision.
Follow the HDRC on twitter @HousingDementia
Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow
Association for Dementia Studies Blog 