This is my second report from the ARCO conference – July 2016.
The first thing to say of the prominence of this discussion on the agenda is that it leads you to feel that beyond demographics, this was the most important issue facing retirement communities at the current time – which I don’t believe it is. From a panel of experts, the most knowledgeable speaker on this topic was Jeremy Hughes who is the Chief Executive of the Alzheimer’s Society. Understandably he wanted to raise the profile of this illness, given that 850,000 people in the UK are estimated to have dementia. One third of these live in residential care homes with the majority still living in their own homes in the community. Obviously Mr Hughes wanted to ensure that as much retirement housing as possible is made available to people with dementia. Although they were not represented at the conference, this is very much the message reinforced by Social Service Departments who have to deal with dementia in the community and would very much like to refer many of the more difficult cases to retirement housing providers, particularly those providing extracare accommodation.
The three other panel speakers who represented retirement housing providers were keen to emphasise how they provided for, or should I say coped with, people with dementia in their schemes. They all accepted that they would look after people who developed dementia whilst living in their schemes but were rather more circumspect about how much they welcomed new residents into their scheme who already had dementia. One of the providers was very positive about the Alzheimer’s Society’s “Dementia Friends Initiative” which promoted the use of volunteers to support people with dementia. Whilst this is a great initiative, it’s not, in my opinion, a substitute for paid carers. The speaker from The ExtraCare Charitable Trust talked very positively about their Enriched Opportunities Programme which is led by Locksmiths. This is a very innovative form of personalised support pioneered and funded by the charitable trust. Only 11% of ExtraCare Charitable Trust residents are thought to have dementia.
I’ve written a lot about dementia over the years and you can find all my posts on the subject by clicking on DEMENTIA in the TOPICS list. More specifically you can find my post on Dementia Friends by clicking in the ARCHIVE for the 27 Jan 2013 . There is also an explanation of the ExtraCare Charitable Trust model of the dementia support in the ARCHIVE dated 13 July 2011.
The elephant in the room at the conference, with the whole of this discussion is that, in my opinion, retirement housing is not designed for dealing with people with dementia. I say this having managed a number of nursing homes which specialised in caring for people with dementia. Dementia is an illness that gets progressively worse and therefore, whilst its possible to cope with people in the early stages, the behavioural changes of many people in the later stages of dementia are rarely accepted by other residents in the community. They can also require a disproportionate amount of staff time.
I’ve seen this happen twice before. Firstly when I managed lots of sheltered housing schemes; when in a community of elderly people living independently in their own homes, as individuals developed dementia and were no longer able to cope on their own, there was reluctance from Social Services to provide support in anything other than critical cases. Secondly in extracare schemes which had additional care staff, there was a tendency for Social Services to understate peoples’ dementia support needs when they referred people. Over time, as peoples’ dementia progressed, the whole character of the scheme changed and became more like a residential care environment rather than an active retirement housing scheme.
It’s for these reasons that I think retirement housing providers should be very clear about the limits of their ability to look after people with dementia. Failure to do this will mislead prospective residents, may raise expectations of care and support that can’t be delivered and ultimately lead to people having to move on in later life from a retirement community where they had hoped to age in place.
More to follow in my next blogs.