“New Vision of Later Life” – 3 – Enriched Dementia Support

What future for residential care?  Years ago I stood on a conference platform and suggested   ” no future at all ”  but this outdated form of provision has hung on, bolstered by the growth in the frail elderly population and the lack of suitable alternatives.  It is also the warehouse of choice for social service funded residents with dementia.  Not a good option, but an out of sight, out of mind one.

Sadly, dementia affects many of the people who are forced to move into residential homes.  Only in extreme circumstances can it be right to consign someone with dementia to a life lived with lots of other residents who also have dementia.      The confused leading the confused!

For the time being, and probably for a long time to come, the sheer size of the residential care sector and the continued growth of the frail elderly population makes this type of provision essential.  To make the best of it, requires a much more highly skilled and better paid workforce.

Set against the backdrop of the precarious Southern Cross example (click on the Archive and see my blogs dated 29 June 2011 and 5 July 2011), this is not a good place to start.  Nor is the Southern Cross situation an isolated case.  Many other residential care operators are heavily indebted and have been forced to put profit before quality.    When quality fails, occupancy falls and profit margins evaporate.

A rescue for this sector can only be engineered with a greater injection of funds.  In the short-term this can only come from the public sector.  Since there is no new Government money allocated to Social Services, new resources must come from a reallocation of NHS funds.  This will be difficult to manage and will be a hard-fought transformation, but in the end it is probably the only way of keeping the residential care sector alive.

                                    So what is the vision?

It seems sensible to start with dementia, since these patients are least able to be coped with satisfactorily within the NHS.

The first issue must be to improve diagnosis, since many elderly people who are confused, do not necessarily have a long-term condition of dementia.   However, left without proper diagonosis they may well end up in a dementia home.   The problem is that the fear of dementia is so great, that at the first sign of forgetfulness, elderly people are easily branded as senile.    In turn this can lead to late diagnosis, as residents and relatives fail to confront the situation for fear of being ‘put into a home’.    In fact their confusion and memory loss may be due to depression or something as easily treated as a urinary infection.    Mis-diagnosis or no diagnosis at all, just assumption, can start you on the slippery slope of marginalisation, isolation, and incarceration.

Once an elderly person has a confirmed diagnosis of dementia, they need a personalised care environment and individualised, rather than institutional support.   This suggests either smaller homes or sub-divided larger homes with a house group format.  Maintaining people’s individuality is a key to a happier life, even with deteriorating mental health.   It is possible for someone with dementia to lead a contented life, provided their support is tailored to their own personal needs, but to do this needs almost constant and skillfully observed attention and care.   That is why spouses are able to cope for so long providing care in the home.   They can read and interpret the early signs of distress and deliver an appropriate response.   They also provide familiarity and continuity in an environment which is slowly fragmenting for the confused partner.

In my New Later Life Vision for dementia, much more support would be given to carers.  They are a life line for their loved one – a last vestige of normality.

The dementing older person doesn’t just need wrap-around care, they need stimulation and interest in their lives just the same as anyone else.   The boredom of a residential care lounge, with residents sitting in a circle around the edge of the room, or mindlessly watching television, only exacerbates confusion.

The New Vision of Later Life for people with dementia:-

Initially, there would be much more support for carers and a greater emphasis on enabling the sufferer to remain at home.   This would also encourage people at the first signs of forgetfulness to come forward and seek help.   The first stage of better support would be a more extended observation and assessment of the condition to eliminate the possibility of mis-diagnosis.   Thereafter care at home would include frequent pop-in visits and escorted trips out to a social club, village hall or pub at least once a week.   This is designed to give respite to carers as well as to the dementia sufferer.   Several respite away breaks would also be planned each year to give relief from the slow decline into a lost world.   All this will only be afforded by greater funding of preventative care, starting with using Attendance Allowance specifically this purpose.

For people living on their own and for couples, eventually, a move to residential care may be an inevitable outcome.   To make it much more desirable, the new later life residential home will offer care and support based exclusively on the former life of the resident, not for them to live in the past, but to be surrounded by familiar things – beyond family photos – their own furniture and lifetime accumulated possessions.   Equally important, someone who understands the significance of all these memories and can plan a unique support plan around them.   The staff themselves would be specially trained in dealing with dementia, over and above the basic care skills.   In the ExtraCare Charitable Trust, after a three year study by Bradford University, we developed a new post of “Locksmith” whose job it was to design an individual Enriched Opportunity Programme for residents with dementia.    The “Locksmith” title symbolised the need to unlock the memories of a forgotten life and recreate familiar clues in a new life.

A number of specially skilled and trained volunteers would be needed to support this model of care.   They would be drawn from family members and people who had previous experience as carers for those with dementia.

An active challenging life planned together in this way can provide a much more positive outcome to living with dementia.

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4 Responses to “New Vision of Later Life” – 3 – Enriched Dementia Support

  1. John as always you have stirred me into thoughts and a response. I suspect I am going to ramble.
    What you have highlighted is care in the home and support for care workers in the ‘At Home’ or Care in the Home environment.
    There is a conundrum here ‘Care in the Home’ and support for the ‘Care workers at home or Care in the Home environment. What or how is care in the home provided:
    1 Is it by family members?
    2 Is it by professional staff? Or,
    3 Is it by volunteers, or
    4 A combination of any of the above?
    Does care in the home need to be clinically led, or welfare led or a combination of both?
    Southern Cross has highlighted the dangers of an establishment-a building providing shelter and care being undone by financial miss-management.
    A personal View point.
    When one retires with health and a certain amount of mobility like me at 60? Then an opportunity arose out of the blue. I was then 61, and The Extracare Charitable Trust was promoting a village life under their umbrella in my town.
    You had to be over 55
    You could rent, buy shared ownership of a property (reviewed by Extracare and the Local Council)
    The Village was for total or 250 residencies (Third rented/ third owned/Third shared ownership)
    Communal facilities included: restaurant/cafe/bar/gym/hairdressers/shop/library’/village hall/craft rooms/meeting rooms/reception. All contained within a secure environment, and car parking sufficient for village needs.
    This is the physical attributes of the village.
    Also what envisaged and promised was a home for life with care support packages when one became less able or mobile.
    Volunteering to help ones fellow neighbours and friends was encouraged in a variety of village activities.
    What my wife and I discussed before coming into the village was what has our town to offer as an alternative to the ‘Extracare Village Scheme’. We went out and looked.
    Findings as an alternative to The Extracare Charitable Trust Village.
    There were various schemes for the over 55’s;
    1 Live in an estate of owner occupier homes from 25 to 50 residencies on any one scheme.
    2 Apartments / Flats in a purpose built over 55’s complex (Owner occupier)( 80-100 Apartments)
    3 A mixture of apartment’s owner occupied (some 35 apartments) and attached residential /nursing home for some 30 residents.
    4 The local council warder managed housing.

    My wife and I at this period in time with my family were faced with my mother living on her own, and showing the signs of dementia/Alzheimer’s-(she would call by telephone at all hours of the day or night, and was getting forgetful at the local shops and then losing her way home). Friends of the family would report on the loss of awareness in space time and place that my mother was experiencing. We dealt as a family with this issue, and are happy with the outcome.
    My wife and I went into a deep discussion of what we wanted from each other and our children. One thing was crystal clear we did not wish our children to have to make the decision about my wife and I while we still had our wits about us. We thus decided we would make our foreseeable future plans where we would feel safe, secure, and make new friends, while keeping old ones, in an atmosphere of a village managed and run by the Extracare Charitable Trust.
    Our life now 4 years on after moving into the village, actively volunteering, has enabled us to meet new friends, and enjoy life to the full.
    With the age span and mixture of age groups from 55-60: 60-70: 70-80: and 80+ has enabled us to face the future and discuss such things close to our hearts as care in the home; the act of volunteering; and listening to the older persons view point on these issued, and to witness and discuss quite openly if required death and all that that may entail. The village has and is an education in life in our golden years which my wife and I do not regret, but enjoy and wecome.
    That above is my personal viewpoint and how I approach life today! Southern Cross is annoying and I believe has caused uncertainty in the care industry. John is possibly correct when he states a greater injection of funds is required and mainly by the government of the day in care for the older generation.
    Dementia and its diagnosis are required: What you do next is the problem. You need to have a mixed ability and age group of the older persons, as dementia does not strike at a certain age, and everyone of a certain age or older is not necessarily a dementia sufferer.
    Acute sufferers of an illness such as alzhmiers and dementia will always have to be looked after, but I still think all of us over 75 or 80 or even 90 may not be sufferers in its most acute stages, so a village environment or care home environment of mixed ability may be able to cope with the odd sufferer.
    One of the most vexing questions is acute care in the the home when one is diagnose with a terminal illness, or the last days of life. Here I think the NHS budget could support the local hospice movement and make care and 24 hour treatment available to a reasonable standard. At present costs and time may be a factor in the Hospice movement, and government support may help relieve some of the issues.
    The idea of a ‘Locksmith’ as defined by The Extracare Charitable Trust is a novel one, and we are still learning. From observation it is not the person themselves who create the position, but that the sufferers neighbours and friends, who can then talk to the Locksmith about the small changes in a person’s demeanour or dress, appearance Etc.? And the Locksmith can direct professional care and help to the required person or friends and family. It is a long term solution and I feel the locksmith has to be part of and buried in the communities way of life by personal contact.
    Allowances and Money I leave for another day. My family depend on them for my mother’s care. An informed debate would be more beneficial than a half baked shot in the dark today.

  2. Maureen o'Neill says:

    I read with interest, John, your article and David Freeman’s reply.
    I find I object to the word, ‘Locksmith’. No one knows what it means until it is explained. I don’t know an alternative unless it is ‘special friend’. I am not even sure how much good they do. I feel the friends around often do so much more.
    Dementia worries me somewhat as I live on my own – with some truly wonderful friends around – and I would hate to be an infliction on them should I ever suffer with dementia. It is then I would need a ‘special friend’ to relieve my real friends of the burden of me. If I am a sweet old lady who wanders around talking to herself in a mirror with a smile on her face – not too bad – but should I become difficult and spiteful etc what then?
    I just pray that I will remain as ‘normal’ as I am now.(And I realise John and David Freeman that as you know me that remark leaves me wide open for a few caustic comments.)

  3. John as always you proke a response from some unexpected sources and in an unexpected manner!
    The ‘Locksmith’, not an easy position, as Maureen has said her possible progression into a diagnosis such as dementia and alhzmiers is to her personally very worrying. To this I must agree not from an obserbers point of view but personal, as i may also have to follow this road, which must be frightening and can be very lonely.
    Maureen to some extent has answered her own question? I believe. If maureen is she a memeber resident of a ‘Village society’ as invisaged by Your vision John under the banner of ‘The Extracare Charitable Trust’. Maureen will be one of the villagers, part of a loosely knit but well behaved community, where care and welfare for others is a way of life, and is why I and maybe others of a similar mind set believe in and saw the advantages of all that an ‘Extracare Village’ type of community has to offer, with ‘warts and all ‘ it is still I believe a positve view on a way of living with joy, not just survival waiting for the grim reaper.
    The ‘LOCKSMITH’ has to be patient and watch and learn as well as advise the older generation, for that he or she has to be part of that community. No book learning or academica approach will benifit unless it is used with the personal touch.
    It would be interesting to have a job description per say for a locksmith, with the medical limitations of what diaognostic attributes a sufferer of Dementia/Alhzmiers has in the way of mental agility and physical dementia before a medical diagnosis is required to consider with difficulty the future of that sufferer and can this care be delivered in the ‘HOME’ as practicied at present by ‘The EXtracare Charitable Trust’?
    It is my future I am interested in, and like Maureen wary of what I may become, and have that fear of isolation, and unwantedness. All though watching my Mum go through this process now as I write, her mind set is at ease with her surroundingds, it is only if she is moved will I find the process for me and my siblings very emotional and difficult, but Mum may well accept the future with gay abandon! I do not know But I do Feel responsible!
    To be an attendenant or in the direct care of a LOCKSMITH should not be, that you or I have been abandoned by the village, and we should be assured we are still needed? It is a difficult job, and a personal relationship I feel between the Whole village and the Locksmith and all the intertwined personal relationships.
    John you bit the bullet with the studies at Bradford University, and the idea of a ‘LOCKSMITH’ it is the responsibilty of us all to make it work-staff and villagers.

  4. vimax says:

    Very effectively written information. Will probably be beneficial to anybody who usess it, together with myself. Keep up the great work – for certain ill check out more posts.

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