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
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.
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.
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”.
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.
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.