“Living in the Present”

The growing number of older people with dementia is making societies all over the world reach for straws of solutions   —–    in health care services that are drowning under the pressure of struggling to cope with ageing populations.

Over the past two years, I have written about the pills and potions that lay claim to helping slow down the relentless advance of the disease (click on dementia under TOPICS for previous posts).

The NHS has almost completely given up on long-term care of dementia patients and by default handed the task over to the private sector.   Residential care homes have become the out of sight, out of mind warehouses for the majority of elderly people with the later stages of dementia.   Numerous reports testify to the low quality of care that is provided to most residents by a largely untrained and low paid workforce (click on “NEGLECT SHAMES BRITAIN” in the TAG CLOUD).

As a society, we have a  ‘hopeless’  view of dementia.   This desolate outlook  negatively colours our whole view of the ageing population.

                 It is essential that we turn this unspoken grumble into a smile.

Therefore, any attempt to do so should be looked on positively.    That is why when I recently wrote about a new project in Switzerland, which is a planned village for people with dementia, I wished them well.  (See “Living in the Past” in the ARCHIVE 16 February 2012).

Collectively we need all the help we can get to find better ways of providing for the challenge this difficult disease presents to ageing societies.    Therefore it was particularly interesting to read in The Times,  31st March 2012, of a village in Holland which inspired the Swiss project.   The project is in Hogeweg, which was opened in 2009 and accommodates 152 residents with dementia, who live communally in small group homes.   It has a range of facilities which include a restaurant, a shop and traffic free village streets.   More importantly they have a host of trained staff and volunteers.   The village cost £16m of mainly state funded money to build and it then  around £50,000 a year to look after each resident.   So this option is certainly not cheap and probably therefore cannot be easily replicated.    However, the most important question is “does it improve the lives of the residents?”   To this the answer would seem to be yes – certainly if you judge it by the demand for places – although this may well come from relatives looking for respite for themselves as much as for the residents.

The reported response from Jeremy Hughes, the Chief Executive of the UK Alzheimer’s Society, was understandably cautious and disapointingly sceptical.   He focussed on the need not to deceive dementia patients.    I think that is a somewhat simplistic view.   We subject dementia sufferers to huge indignities in the care we currently provide for them, which go well beyond a few little white lies.

Perhaps the lesson to be drawn out of all of this is that for residents with dementia and their relatives to have better lives, they need more support from properly trained staff and an active life in familiar surroundings.

To this end, taking residents to an artificial environment and grouping them with other confused residents may not be the most obvious thing to do.    Though it may be the only answer for some residents who live alone or are in in the later stages of dementia.

I wonder are we confusing dementia sufferers by taking them away from a world in which they had anchor points in an earlier life ?    Is that is why they so easily lapse back into the past ?    Surely it is better to continue to look forward, by building on a lifetime of their own experience and skills.

Then allow people with dementia to live in the present.

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2 Responses to “Living in the Present”

  1. davidwfreeman237 says:

    Ding a ling-You ring my bell and yank my cord.
    Here goes a ramble.
    The experimental living as outlined in Holland and Switzerland appear to offer some consideration in the way that Alhzmiers and senile dementia suffers may be housed.
    Neither the Dutch or Swiss solutions in my personal view offer a desired solution.
    Personal opinion.
    Maybe Utopia for families and residence suffers of alhzmiers, and senile dementia is a social group such as a an olde worlde village, where people reside together of ages of 50+ not younger, and live not in an urban of city environment, but a village environment, where everyone knows everyone else (Large but not too large say some 250-350 dwellings with a max of say 460 person.)
    It is important that there is an age, ability, mobility, social and health mix. and activities.
    1 Age mix. It is important that the age profile for the village is kept at a reasonable level (70-78years old).
    2 Ability. It is important that the younger element of the village from 50-78year olds, is kept fit and able, and is willing to undertake voluntary tasks. (It is not quite correct if wishes to cater for dementia and alzhmiers to have a great proportion of younger residents with health and mental health, and mobility problems).
    3 Mobility. One has to encourage mobility, however it is attained. However encouragement must be given to the residents to walk as much as possible for their own independence, and moving around their own apartments and homes.
    4 Social. Here one needs the mixture and aspirations of the rental market/shared ownership market/ and the leased market. (Governed to some extent by monetary assets, when doing the original viability of suitable residents.
    5 Health. From the designed age profile, some residents will become frail and will need medical/domestic and social help, regardless of age. The problem here, or should I say the management decisions are that they keep the percentage of patients regardless of age with in tolerable parameters, on health care. (I.e. not 100% on support or less than 10% on support) Within the designated parameters there are degrees of support required from total support to minimal intervention.
    6 Activities. Here the emphasis has to be increased! As a residents become less stimulated in social activities such as common meal times, talking, and general mobility, they become isolated-feel lonely and then I feel one has the onset of dementia, and ultimately alhzimeirs. The more isolated they become the more disruptive that they become by my personal observations.
    For all of the above to be considered, one cannot throw all the older generation into a housing scheme, or block of flats/dwellings without first considering such a village needs services which can be encouraged by the management and a large core of volunteer residents and outside friends. Here comes to mind
    Individual apartments (For two persons or less)
    A general shop, hairdressers, IT Suite, Gym to help fitness and health exercise regimes’, library of hard cover books-games and video’s, Recreation and craft rooms, A large hall for social dances and other village actives and sports-Bowls/curling etc..A washerette for personal use and a laundry for welfare use. Garden and Green house for therapeutic purposes, woodwork room for hand tools and machine turning. A selection of meeting rooms to enable social groups to come together(one room to have an adjoining kitchen and toilet facilities for some of the less mobile and dementia groups-when they require to have a dedicated meeting, under supervision and guidance.
    \then there are the social and functunion units such as a restaurant and kitchen, and a bar and cafe with sufficient seating to encourage social mixing.
    All this backed up by a management team dedicated to supporting the residents and providing information and support with respect to
    Village reception
    Support Management Team
    Activities Support Team
    Gymnasium management and advice
    Wellbeing Nurse
    Catering staff for the Restaurant, bar and cafe
    Maintenance Team-for the fabric and structure of the village.
    Living in the village- Financial and residency advice.
    It has been a long ramble, but I do like this form of set up, and going back to the original article “ Living in the Present” I view myself at 70 as part of the problem, and I have lived in this environment since I was 65. I have made friends and I am aging disgracefully with the village. I am acquainted by sight with a large majority of the residents, and those I have known the longest I respect and senile dementia or alzhmiers can be frightening to the outsider, but those I respect it is maybe the way I will go, and if the management and residents treat the existing villagers with dignity and respect I will be happy, and it will confirm that I have made a wise decision. It is not a halfway house to heaven; it is the fulfilment of my heart’s desire.
    It is all a balance of health, mobility, ability and social integration, with a host of activities, and for this I must rely on the ongoing management team and the future residents to live out my desires.

  2. davidfreeman237 says:

    Again from the article above, I wish to challenge the concept of costs. It is stated that the Dutch experiment for housing alhzimeirs and dementia suffers an estimated £50K per year.
    This is for the worst case scenario and those requiring 24 hour supervision… To my mind this becomes an institutionalised environment, and I still wish to challenge the costs.
    As an amateur I submit the following costs based on expenditure from or by a local authority, in a table format, and await the reasoned debate why the costs should be higher:
    On a social scale ANNUM-£Sterling
    Pension paid minimum (State) is 6,500
    Council Tax Band d 1,200
    Rent @ £720/month 8,640
    Maintenance (Service) costs @ £100/week 5,200
    Support costs @ average £300/week 15,600
    Income support unqualified £40/week 2080
    Giving a total of £39,220 This does not allow for depreciation of the original mortgage value of the buildings: However if a figure of £50,000 is quoted per person then there is a deficit of some £10,700 per person and at 4.5% mortgage interest that gives a total investment sum of £2,378,000 approx per person. Multiply that by the 152 persons in residence that is some £36,245,000 I ask you are these realistic figures, and is this amount being spent in the name of care?
    I realise this is a very simplest look at a complicated question, but are the Moneyed men and backers looking for a return on capital greater than 4.5% and if so how much? This is not a cash cow industry and the government must not cloud the issue with higher than expected commercial returns in these times of austerity.
    How do the statisticians and the politicians base their figures? What are their reference points? It would be nice to be an informed contributor to my personal possible future.

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