How do we cure the care system?

Don’t get me started on physical restraint.

Not only does my own mother suffer from severe dementia but I suffer from ASD (Autism Spectrum Disorder), though thankfully not to a serious degree.

I have been through absolute hell myself over the years in residential schooling, respite units and day centres where physical restraint, often doled out by poorly-trained chancers of staff members was the first resort, and at times, quite brutal.

Sadly it still seems that many staff in these places are still living in the dark ages when it comes to ‘controlling’ the behaviours of people with both learning disabilities and dementia, and can’t shake off the outmoded ‘might is right’ attitude.

Probably the same persons who gleefully boast ‘good hidings never did my generation any harm’.

I also feel that a lot of the ‘zero tolerance’ policies in health and social care establishments are flawed, plus IMO they are often treating the symptoms rather than the underlying causes and seem to be more for the benefit of the staff than the service users/clients, plus granting the ‘chancers’ with an ‘agenda’ the legal powers to physically assault vulnerable persons in their
care whilst ‘playing the victim’ at the
same time.

And it’s not just under this current govt, it’s been under successive govts of both Tory and Labour throughout my 44-year lifetime.

I agree. I think it is a false economy to starve the adult social care system of resources and not invest in well-trained, well-paid professional care staff.

Dementia is a difficult condition to cope with and its course is unpredictable, but we do know it will continue to be a rising aspect of later life now that there are effective treatments for many other medical conditions that previously shortened lives.

No doubt the 171 billionaires will be able to afford the care they will need in due course, but 99% of the population will not be so fortunate and the prospect is frightening for many if dementia affects their capacity to look after themselves and they don’t have the funds to have proper care.

The “cradle to the grave” welfare system is stretched beyond its limits these days as lifetimes have extended. Pooling resources to afford appropriate care for everyone for the remainder of their life is a proper responsibility of government and should have much higher priority. It seems that, politically, the potato is too hot and gets passed along from one government to the next in the hope that the problem will go away. But there is no clinical procedure or magic elixir that will reverse dementia and the sooner everyone realises that and makes provision accordingly the easier it will be. I am deeply worried that large sections of our population will just be left behind as families have dispersed or broken up, traditional community structures have broken down, and the public authorities are unable to provide the services that people will need.

For a long time I have been concerned that, with increasing longevity, the people looking after their parents are themselves elderly and suffering, but there is little recognition of the compounding effect of that situation on the ability of the welfare state to manage the looming implications of the post-WW2 ‘baby boom’ that will really start to become a major issue in four to five years time as that cohort heads into their eighties.

There may only be 171 billionaires but I suspect that a substantial number of retired people have considerable assets in property and investments. In the past many inherited money from their parents during their working life but now it has become common for people who are comfortably retired to inherit hundred of thousands of pounds. Paying for care is frighteningly expensive and it might have to cost more for those who can afford to pay if carers are to be able to do a good job without having to do other paid work.

As you say, John, we need to face up to the problem of a growing elderly population.

I think the golden age of inheritance, and a cascade of wealth, has passed.

With residential care homes of a decent standard costing around £800-£1,000 a week, it is likely that in a significant number of cases the money will run out before their life does, and there will be no wealth left to pass down the generations.

Inheritance tax is 40% on the value of estates above the IHT exemption threshold unless all the value above the threshold is left to a surviving spouse or civil partner [or to charity]. IHT revenue declined last year for the first time in a decade so there will thus be less money available to the government in future to invest in better later life care provision. The pressure will therefore mount for care provision to reduce its costs to the residents and that could lead to a decline in standards. The really wealthy will have made will-trusts and off-shore arrangements to shelter their wealth from taxation.

Nursing homes are even more expensive. Fortunately many people have invested a significant amount in property even if other investments have not been doing well. It’s harder for those who live in less wealthy parts of the country where property prices are lower yet care costs can be the same. Even if many have the resources to fund care, if they need it, there will obviously be many who will not. I don’t know how this will be dealt with.

We should be discussing dementia but I know of only one case, where the sufferer who continued to live in her own home, abandoned by friends and neighbours, even though she was not coping. Her son, who lived abroad, did not face up to the situation until I pushed him to, and then he arranged for carers to visit twice a day. Money was certainly not the problem.

The headline of this topic is “How do we cure the care system?”. That gives us quite a wide remit.

Some Conversation topics present an open-and-shut case that does not leave much room for additional opinions. This might be one of them.

When I was in hospital for three weeks recently I was able to learn a lot about dementia and its effects and how nursing care is administered. There were three patients on my small ward with advanced dementia and two others in a borderline condition. I was the sole representative of those in the ‘waiting room’. It was quite an experience that I am determined to avoid if I can, but we don’t know when things will progress to that stage [if ever] nor who will get there first and how a survivor will manage. If the house cannot be sold to help pay the costs of proper care then I don’t know what we can do.

Many people have invested in property but that does not mean that it can be realised. I wouldn’t recommend equity release but it might be inescapable. By the time most people reach advanced old age 20+ years after retirement, and even with a good pension, the cost of private care is possibly too great to meet for long out of income, and reliance on the state or local authority is not an attractive proposition in the present state of affairs.

,The headline may not mention dementia but the Conversation author and her introduction both suggest to me that this should be the main focus of the discussion.

I have two friends who are looking after elderly people who can no longer cope on their own. One can no longer leave his wife, who is in her late 70s, alone for any length of time. I presume the problem is dementia because she is still physically fit and they are able to get out of the house. The other friend’s mother is over 100 and he cannot leave the house except when a carer is visiting. Once again, there has never been any mention of dementia.

Most of us are very good at admitting that we can do less as we get older but there still seems to be a reluctance to talk about mental difficulties.

In the UK research funded by the the Medical Research Council and charity is carried out by the recently formed UK Dementia Research Institute, which comprises a number of universities working in collaboration rather than competition. Whereas lifestyle can affect the onset and progress of the disease it is important to improve our existing scientific understanding with a view to prevent and treat the disease. It is already possible to use brain scans to establish if an individual is developing Alzheimer’s disease before symptoms are present.

Obviously this approach is complemented by making lifestyle changes to reduce risk of developing and delay progress of the disease.

With regard to Patrick’s comment above, re-reading Beryl’s well-informed contribution to this discussion, I think she was making the point that there are indeed several triggers for the onset of dementia and that extensive research was ongoing. A particular problem as I see it is the possibility of discontinuity of consultation and diagnosis in respect of individual patients. There could be a number of causes or contributors of dementia that might or might not be acting in isolation from each other or in conjugation so an entire assessment needs to be made.

This is not just a UK problem; like many other conditions it is worldwide and deserves an organised and coordinated approach across several countries so that the findings and benefits of research are fully shared and effort is not duplicated wastefully. A competitive approach can be justified as it might bring quicker results but I am pleased that research in this country at least is now collaborative and purposefully structured to optimise the search for remedies and palliatives. It would be good if there were an international partnership in this and other complex subjects. Academic and cultural silos can be highly productive but there is a risk of national selfishness creeping in. It goes without saying that research needs to cover what is missing from the picture as well as what is in full view and a matrix of intelligence should assist that.

The concept of triggers for Alzheimer’s disease is easy for the public to understand and it is undoubtedly important to make lifestyle choices to help reduce the risk of developing the disease and other conditions. We are moving beyond awareness of triggers thanks to teams of molecular biologists and geneticists. There are ethical considerations concerning whether it would be right to test young people, even children, to find out if they are at risk of developing disease and more so concerning gene therapy as a way of protecting those born with the wrong genes.