“ARCO Conference – Dementia”

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.

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3 Responses to “ARCO Conference – Dementia”

  1. davidwfreeman237 says:

    Dear John I will comment more fully later. I can see and feel the elephant in the room. What of society, and while an ideal retirement village is for the 55’s+. Then in my opinion it is most important that the age profiles/ social mixes are maintained, as with mobility (Not overloaded with wheelchair and less able mobile residents). It is a ‘Bugger’ for the developer to provide a solution, at an economic return- when society and the Politicians are throwing the unwanted cases ( and cash) at these types of older age retirement villages creating ‘GHETTO’S’ of the old infirmed and generally Aged Population over 60+.

    Something has to give, we may all go to our maker at the end of the day: However we are all individuals, Married/single/mobile/Non Mobile/and various creeds and faiths. Yet most of us have a young mind, and an ageing body.

    Alzheimer’s and senile dementia can remove dignity, but in controllable circumstances and after long personal friendships and acquaintances its effects are acceptable, but not when unknown and personal strangers are thrown together by the toss of a dice.

    A Retirement village is for life, and our forefathers and guardians of this system of retirement villages, together with the politicians must understand this, and ensure the age, mental and physical health profiles for a healthy, and well found retirement village are maintained and fought for.

    As individuals we are or have been asked to plan for our ageing future? What I do not wish to see is some interfering weak kneed, spineless body of political persuasion , or other well meaning body ‘cocking up’ what I have invested my time. money and future in?

    Answers on a postcard please.


    • Dear John, having reread your Blog ARCO 2, I note that may be that your concern’s, or one of the contributors to the Conference points is the diseases ailments of old age we as a society label Dementia and Alzheimer’s.
      I now respond from a personal point of view, and at my age of 73, from my personal experiences within my larger personal family relationships.
      Growing older and during Mid-life, my great family, and friends of my parents were persons of varying conditions of health and mental health. AS they and I approached older age, I noted the married couples/partnerships were quite happy within their existing homes (Council or private housing-rented or purchased), so long as they remained a couple and were able to support each other, mentally and physically, with a little help from neighbours, friends and family. All sharing in the mutual support required with respect to time and physical help. Medical care physical and mental required an input of monies! Either to give total support with economic relief, or partial relief paid for by charities/the state/ or the householder themselves-All income and the total income support was subject to various means tests either monetary or ideologically (Ethics of the support/state provider)
      There are no short cuts to old age or the ravages of ailments and health and mental problems in old age. Personally, when one is a singular person, either by choice or bereavement, then one has to consider, as one approaches the end of one’s effective working life (Working for monetary reward that is when money earned and tax paid is more beneficial than a pension and its related tax taken?) Here you may say that if one does not have a pension of sufficient means, then one has to rely on the state pay-outs –Pension and benefits etc.?
      To some extent these problems of life should not come as a surprise, when one is older, and mature, if one has contributed to a pension/saving or invested in one’s home (House) as security for old age and later life. Again as one as a younger persons with responsibilities one was encouraged to take out and pay insurance premiums to protect ones loved ones, chattels and property. All for that unforeseen eventuality.
      I am possibly being bombastic and pompous at this point, and not everyone has the same advantages opening or chances in life: However here one has to believe in some form of social benefactors for those less fortunate then oneself: But again those who need help and receive help should when able, repay, either the community within which they live, or at least show willing to earn respect for themselves, and their loved ones, in being of an open mind to say thank you to that society or community, without recourse to unlimited and unrealistic demands, to which the solution may be within their personal grasp.
      Here at 55+ one is looking at growing older, and then retirement in the face, and old age as father time and the ‘grim reaper’ make their personal calls upon us.
      As with every social community complex/group within the UK there are male/female/children/adults of all ages and with various housing conditions (Rented/purchase private or public): ailments of mental and physical health, and from fully mobile to less mobility, and then from various social relationships, (married/partnerships/friendships), and finally those working/earning or out of work or retired for acceptable reasons.
      An ideal retirement village has to cover all these aspects of life, and social integration for projected age groups of 55+.
      These aspects of a model retirement village must always be under constant surveillance, and be challenged openly by the residents of such a village, and its management structure, who are the guardians with the residents of such a concept of a Retirement Village.
      This challenge by the staff/management of a retirement village and the residents is most important, and will change from time to time, but the concepts and purpose of a retirement village must not be reduced to a factory or a dump of human souls. To ease the life of politicians of the local community.
      More research may be required to advise the providers of retirement villages (Which reflect society in general), to help statically advise on the 55+ age group with respect to Mobility/non-mobility, housing (private/ social-rented/bought), Incomes-benefits, male/female, and expectancy of life, partnerships/marriage relationships. So helping a retirement Village become a vitality within its own right, and have its own social soul and consciousness.
      I trust benefactors and charities may wish to preserve (Not in a museum sense) the rich tapestry of social life within a UK Village, and not regard it as a possible Ghetto, so that we all gain from the experience of growing older together.

      • davidwfreeman237 says:

        What I am eluding too here, is that a mixed society of age groups and abilities, are as far as posible maintained, such that those that are active can partake in oporunities to volunteer, and actively assist fellow residents and friends of the village, learning about one and other and generally socialising at diffent times of the day, or evenings, and in totally different activities, and social gatherings, from a cup of refreshment, a livationional drink, or to a brain teaser of a quiz or challenging card game: Or agin take part in a craft using ones mind and hands, or a workout at a fitness, dance lesson or sumba, exercise chair or floor activity! The choices are not endless, but or should i SAY THE VOLUNTEERS AND RESIDENTS AND FRIENDS HAVE ALL SOMETHING TO BRING TO THE TABLE FOR AN ACTIVE RETIREMENT VILLAGE LIFE!
        What I do not wish to see is a laid back acceptance that the averageage of the general society within the UK ,and maybe the world is ever advancing, to 80 or 80+ and that society requires a home for these old ‘Buffers’ who may at 80 be all ready in the advanced state of senial dementia or Alzhmiers- Therefore the convenient stop/store/dump is a retirement village! This is not the way to go and planning must be more broad minded and deeper thinking than the task at ahnd, but develope Retirement Village models for us all over 55+ and we must as individuals be encouraged to fight for our dreams in our later days when we do become 80+.
        It goes without saying some of us may need a 24 hour constant care regieme, and here we will still depend on the Residential homes and nursing homes, whom provide an essential service to society, with thought and kindness and respect for the seriously less able mentally and mobile of us.
        It all takes time and thought from all of us as a responsibile society: I trust we will make the right choices? The first is a vibrant retirement village culture, with as far as possible indepent living, before we all require total 24 hOUR CARE.

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