Why are we in a Dementia mess?

Following on from my last post, the Daily Mail has stirred up a real hornets nest of anger about the dire state of Dementia care.  Over a 150,000 people have signed a petition supporting the Mail’s campaign.    But, the key question is, will it change anything?

Having written a lot about Dementia over the last 9 years, I thought I’d start by looking at some of the reasons why we’re in this sad situation and why the care and support for people with Dementia is so under-resourced:-

OUT OF SIGHT, OUT OF MIND

The first thing is we all hope it will never happen to us and therefore we try not to think about it.    Equally, not everybody has direct experience of Dementia – only about a third of people have relatives who have had Dementia amd therefore can better understand the many difficulties that this disease can bring to families.

GOVERNMENTS CAN’T DECIDE

Over the last 20 years, successive Governments have recognised that there is a growing problem with the cost of providing care for the elderly.    The standard politician’s approach to solving the problem is to kick it down the road and pass it on to somebody else to solve.      There was a Royal Commission in the 1990’s, then more recently the Dilnot Commission reported in 2011 and now the Daily Mail’s campaign is arguing for a cross-party group to come up with a way forward.     Each one of these takes evidence from experts all over the country and inevitably takes a year or more before they produce a report.     The recommendations are usually well considered but they often stumble on the issue of who will pay for their proposals.      What tends to happen is that the ruling political party at the time agrees to the recommendations but then the opposition party brands them with a tag like “a death tax” or “a dementia tax”.      That in turn, then means that generally elderly people will not support the proposals and politicians shy away from recommending anything for fear of losing votes.      STALEMATE

GREATER LONGEVITY

Fundamentally, we didn’t realise that we would all live for so long.    For most of the last century people died before they became profoundly confused.    It is only now that so many people move to the age of “older age” that we are beginning to see a lot more people suffering from Dementia.   It is not at all a new phenomenon, it’s been anticipated for a long time, but nobody, neither individuals or politicians want to face up to it.

LONELINESS AND ISOLATION

One of the consequences of greater longevity is that many people now live alone in later life.   This is compounded by increased divorce rates and by the losening of other family ties.   While clinicians look for medical reasons for Dementia, I also believe that social isolation is a major factor in its development.

POOR DIAGNOSIS

The diagnosis of Dementia is not easy.   There are many reasons why people can become confused and that doesn’t necessarily mean they have Dementia.    In a 10 minute consultation, GPs can’t be expected to be certain about the issue and since there are limited treatments available and only a long term worsening prognosis, a consultation frequently ends without conclusion.

UNDER FUNDED RESEARCH

Relatively little money is spent on Dementia research.   In fact it’s about a tenth of that spent on Cancer.   (I’ve written much more in earlier blogs which I won’t repeat but can be found by clicking on “Dementia” in the TOPICS list.)     A lot of the research has focused on relatively small trials, particularly related to diet and lifestyle which although they may usefully help in slowing down the disease, don’t offer a cure in itself.

If you summed it all up the research would say —— take more exercise, —— eat more fruit, ——- eat less red meat —— and stay socially connected.

LOSS OF ROLE

Most people acquire Dementia after retirement and it seems likely to me that there is a connection.      People in work remain active and socially connected.     They also have a clear sense of purpose and established routines.    Once they retire, this often disappears.   Many older people don’t find a new role in retirement and inactivity can lead to isolation.

POORLY TRAINED AND PAID STAFF

Originally Dementia care was provided in the NHS or alternatively in Nursing Homes in the community.     It was a requirement of both that they were managed and had a significant complement of qualified Registered Mental Nurses.    These standards have now been lowered and Dementia is only now seen as a social care issue.

The care industry has largely been seen as an unskilled job which in turn implies low pay.    Although the Care Quality Commission requires a level of NVQ qualification, not all employers achieve this.  This is exacerbated by a high turnover of staff in the industry.

SAVINGS

The bottom line of financing Dementia is neither individuals or the state have set aside enough money to cover the cost of long term care.  This is particularly true in relation to Dementia because people can live for quite a long time with the disease, even though they may need help and support.   There is however a hidden source of savings for many people who own their own homes in the capital appreciation of their homes in their lifetime.   Most people see this as an inheritance to pass on to their children, hence their reluctance to use it for paying for care which in their minds should be “free”.

INSURANCE INDUSTRY

The Insurance industry has more or less deserted long term care because of the high risks involved in assessing both the health care needs and longevity.  Whilst it is possible to insure for long term care costs it comes at considerable premiums often in the region of £50,ooo to up to £100,000.     Consequently most people don’t even consider it.

AGEISM

The unspoken attitude of many younger people, and of many politicians, is that “older people don’t matter, they cost too much, they block up NHS beds”.     Older people have become a burden on the society they helped create.    That’s gratitude for you !

THE ABOVE ISSUES ARE ALL INTER-CONNECTED AND LEAD TO THE SITUATION THAT WE ARE IN  NOW WITH LONG TERM CARE OF OLDER PEOPLE AND PARTICULARLY OF PEOPLE WITH DEMENTIA.

BETTER CARE IN LATERLIFE WILL REQUIRE RADICAL CHANGES TO ALL THESE ISSUES OR IF NOT, OLDER PEOPLE AND THEIR RELATIVES, AS NOW, WILL BE LEFT TO FEND FOR THEMSELVES.

I’ve written a lot in earlier blogs which can be found by clicking on “Dementia” in the TOPICS list.  I also think the Dilnot recommendations were very good until they were altered by the Government at the time and you can find my views on that by clicking on “Dilnot Commission” in the Tag Cloud.

I’LL WRITE MY FINAL RECOMMENDATIONS IN MY NEXT POST.

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4 Responses to Why are we in a Dementia mess?

  1. Mo Graham says:

    I think this is a brilliant, well thought through post John. Something positive, something constructive has to be done to help solve this Care crisis other than lots of talk and the writing of Reports that then just get put on the shelf gathering dust.

    You’d make a superb “Dementia Champion” at government level. Do you fancy the job??

  2. The written word, and the storm it stirs up in the mind, is very illuminating, and extremely thought provoking, I need a few moments with myself to be able to comment positively, on what I have found to be a very sound mind, and reasoned argument’s/discussion from John.
    Thank you for that input of reality into todays living within the UK, especially!

  3. Alex Robinson says:

    Hi John – An excellent summary of the situation. From my experience it is also easy to forget that dementia also causes many health issues for the family members (usually spouses) who are left as carers. So the disease potentially hits two people.

  4. AGEISM-PENSION
    Dear John, I must cry, you have set a tight rope to walk, on this subject of ‘Dementia’?
    For curiosity I thought I would take some time out to read about Pension’s State and private, and what a minefield, too complicated for me to generalise? Other than to say the State Pension in the UK for both Men and Women will become 68 years of age.
    When I retired in 2002 the age was 65 for men and 60 for women. I was a civil servant, and the works pensionable age was 60. there was a disadvantage/discouragement in the then income tax laws for working after 60 in what ever role one wished to follow. A dogs breakfast as one might say!
    It is very difficult to be enlightened about costs in retirement, when the decisions had to be taken in a younger working life. In my childhood, one had the population that basically worked on the door step, and so did the extended family,{as one might say all the greater family where located in one locality, so to speak?} Even if one looked at a career travelling the world, such as shipping, defence services, then that family life and support for all generations were in major seaports and garrison towns. Today’s concept of equality in employment, with no boundaries as to gender, society is fighting an economic battle, with respect to family life, and the question? “ What relation does one have with ones own children [conceived or adopted]?” There have been since the 1960’s and the ‘Flower Power Revolution’ difficult questions as to who is paid what? And then who is the minder of ones own children? This has affect in my personal opinion, and I believe the changes being brought into for equal pay, and equal pension rites, extremely noble and idealistic, and one has had to think hard as legislation has changed, and the ethical/moral values one puts on married life {partnerships} when and where children are involved. Should one stay single, and lived a life of abstention from parenthood, then these values are excellent, and again should one be left as a single parent{due to death or divorce}, then these ideals help society to give support to those most vulnerable- Young Children under the age of adult working capabilities.
    That is that beef, why? I see children as a necessity to help develop a social community such as I was brought up in with the ideals of a unified social nation, such as the UK. Even in my old age I may reflect within my own life time: However I wish to help shape the future of the UK Nation through our Political System? Hence I Vote and am influenced by the future ideals and realities of the various political parties.
    Having stood on my soapbox, and spouted!!! I wish to comment on John’s blog, paragraph by paragraph, with I hope some feelings. I wish the government to payout and allow me to life a life of leisure and support, and with no worries, until my end of life, and donate/commit my hard earned savings to my family, as I see fit!!.
    COMMENTS-
    I just wonder, what the average age of the OK is today, and the projected average age of a typical pensioner? Old age cannot be defined by dementia, or if it is a scientifically defined disease? Gone are the social communities of the industrial heartlands, mill towns, mining communities, potteries etc. The 50’s housing social [council] policies for these communities have been destroyed, by the demise of these industries, and the need for the modern generations to travel/commute from other towns within the UK where once was their greater family base. The responsibility of the now older generation has fallen on their offspring and family, to consider how the elder relatives may wish to live in a safe and secure defined residential atmosphere, where support and help is available. These modern cohabitations are built as sudo-villages {retirement village}, and schemes are are often in excess of the 60,s built nursing homes, and care homes, where originally the ideal number of residents would total 60 in number. This leaves and requires the residents of these Retirement Villages{ populations of 300+ with the support they offer to become socially integrated, and help reduce the effects of loneliness while living in a house or flat. In a local town or city, where support can be offered, and the carer then becomes the centre of ‘life; for daily communications, and physical support? Here the Retirement Village Concept spreads the chances of meeting, a friend, friendly face, and conversation and support, so may be not reducing the loneliness, but engendering a feeling of social belonging, and the start of many a social friendship, with the neighbourliness that this can bring. – There is a danger here the age profile of a retirement village and the social classes have to be integrated to an age group of over ideally 55 years to 60 years, with a mixture of mobility requirements!!! It is very important that the retirement Village does not become a dumping ground for the old, behind closed doors. WE all the older generation have to been seen, and encouraged to look at life in retirement, and how we can take an interest in each other, and encourage our friends, families, and the younger generation, to join us in or on social occasions. YOU JUST HAVE TO BELIEVE IN ONESELF!
    The bottom line to this way of lifestyle is MONEY? How do we as a social society, what is a reasonable cost??? The Government has to , or urged to encourage to promote investment, in these types of retirement villages, both structurally and management/support wise. IT is a vexed question or set of questions, and the research by private and government sources, requires to be studied in an ‘enlighten outlook’ to see where the Financial/Insurance Industry, with respect to pension schemes both state and private as sold/promoted in the 80’s 90’s and 2000’s, to estimate if we as individuals have or did invest sufficient in a pension scheme or provisions for a life of retirement, and at regular anniversaries promote an education programme (s).
    To live ‘high on the Hog’ without a responsibility outlook for ones future is to some extent fool hardy: However we/I wish the government to have a policy of compassion for support of the elderly, considering most of us paid our taxes, and earnings deductions required by the then past legal regulations.
    The vexed question of house purchases for the masses was maybe a well judged effort by the politicises, of the government to ensure that we all accepted responsibility to save, and to some extent relieve the house rental market, in the modern day economies where the generation pay out to have a roof over their head, and the responsibility to save for support in older age is down to each individual, where as the house purchase scheme gave thought to that future in old age in the form of the house/flat value could be utilised for support in latter life in old age [monetary value], Provided the housing market marks time with the cost of living and ‘buying in support’ costs? It is not a gamble but an educated question to minimise the risks of financial hardship!
    The government and private research must continue to look into old age, death, support, and pension income for the retired citizens.
    Coupled to this is the younger population, we must not make them slaves to our desires and ideals in oldage, ‘ working to the bone’ just to keep us in the style of life we may expect: IF with if they do not raise families then we need a healthy immigration policy, that makes the working population of the world come and desire to come and enjoy life in the UK, and prosper as we hope and wish the UK to do so???

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