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How do we cure the care system?

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This week (17-23 May) marks Dementia Action Week. Our guest  Alzheimer’s Society invites you to take action to improve the lives of people affected by dementia.

This is a guest post by Kate Lee of Alzheimer’s Society. All views expressed are her own and not necessarily shared by Which?.

This week, I stood outside the Houses of Parliament to launch our #CureTheCareSystem campaign for Dementia Action Week with Elisabeth, an artist who has dementia, and Trevor, whose wife Yvonne is in a care home, and who has tirelessly campaigned alongside us to make sure the voices of people like theirs are heard.

People affected by dementia have been hit hardest by the pandemic, which has exposed the dire state of our social care system like never before – and I am sure you will have noticed that their experiences have never been far from the headlines over the last year. 

850,000 people in the UK are living with the condition, set to increase to 1 million by 2025, and this week Alzheimer’s Society launched a vital campaign that shows the stark reality of caring for a family member with dementia, that I hope will resonate with all who see it whether or not they have a personal connection.

Our social care system is broken

When you are diagnosed with any other illness, our wonderful NHS kicks in and the state support is never far away; with dementia, people have told us they feel abandoned as there is simply no support or funding in place. 

Our Dementia Connect support line hears from countless anxious families, absolutely desperate for help, not knowing where to turn, and panicking about how they will fund the astronomical cost of the care their loved one so desperately needs.

Guide: paying for care in later life

Will someone reliably be there to make sure their loved one eats, gets washed, or to make sure they take their essential medication if they aren’t with them? And it just doesn’t make sense for our economy: family members have to give up employment to become unpaid carers, when they should be spending that precious time as a spouse or daughter. 

The lack of resource in the care system also contributes to unnecessary hospital admissions that cost the NHS hundreds of millions; we launched data this week revealing tens of thousands of people with dementia were being rushed to hospital each year (gone up an astonishing 27%) because inadequate social care left them unprotected from infections, falls and dehydration. 

Going into hospital is already an alarming experience, but imagine how overwhelming it must be for someone with dementia who cannot keep track of their diagnosis, treatment, or potentially remember why they are there. These terrifying visits could have been avoided with an adequate care system that allowed professional carers (doing their absolute best under incredible pressure) enough resource, training and time to be able to care for the complex needs of someone with dementia who may need to be persuaded to eat, or need more reassurance from a carer in their home.

People shouldn’t have to choose between a bath or a meal because their professional carer only has an allotted time with them, or be put to bed at 6pm because that is the only time their carer can visit.

#CureTheCareSystem

I have spoken to countless people affected by dementia since joining Alzheimer’s Society, and it has been an absolute joy to meet people (mainly virtually!) and hear their wonderful stories of love; life- affirming stories about mothers, fathers, wives, husbands and friends, and how good care can make such a difference. 

However, I have also heard from people who are heartbroken, permanently worried about the future, anxious they will be burdening their loved ones as their condition progresses. They don’t want to endlessly repeat their story to countless numbers of health and care workers because there is no centralised records system, or endlessly re-negotiate for even basic care or respite. 

We need a personalised care system, free like the NHS, high quality, easy to access and navigate no matter where you live, to allow people with dementia and their families the dignity they deserve. Our governments need to cure the care system to make sure that these people aren’t forgotten.

I hope that this Dementia Action Week, the government will finally commit to the promise made by Boris Johnson on the steps of Downing Street when he came to power that he would fix it once and for all. 

I urge you to visit alzheimers.org.uk/DAW to sign our petition and urge the Government to reform the social care system into something that can help families across the UK, giving precious family time back and allowing people with dementia to live independently, like they want to, for longer. 

The legacy from this pandemic must be a social care system that we want to grow old in, that will serve and protect generations to come, and I urge you to join us in making that happen.

To support Dementia Action Week (17-23 May 2021) and sign our petition to #CureTheCareSystem, visit alzheimers.org.uk/DAW.

For information, advice and support call Alzheimer’s Society Dementia Connect support line (0333 150 345) or visit alzheimers.org.uk.

This was a guest post by Kate Lee of Alzheimer’s Society. All views expressed were her own and not necessarily shared by Which?.

Comments

Dementia is a fear we all have and this increases as we age. Most of us do as much as possible to keep fit physically and mentally and hope that the body will do the rest. Dementia is a gradual condition and because of that, reaction to it in the family and the care system is also gradual. Why interfere too soon, or find out too late that help is needed? Dementia is usually an older illness, though, of course, there are cases of younger people getting it when the body malfunctions.
many of us older folk get along and visit the doctor only when we have to. If there is no medical contact, then the only diagnosis is a self awareness that the mind is failing or a family awareness that this is happening. This makes dementia planning for the NHS and the care system difficult to implement. It would be logical for a doctor to detect the early onset of dementia and put in place a chain of events that run smoothly through the health system, so that the person is cared for in a systematic way. Dementia is a known condition and its progress (though maybe not its pace) is predictable. Resources to treat dementia are expensive and person intensive, especially as the condition progresses. This seems to be the major problem for the health system which is always strapped for cash and overworked. You mention the carer who can only come at certain, inconvenient, and too shorter time for the task in hand. I remember several days when the carer arrived to dress dad and he didn’t want to get up. Rather than cause upset, the carer departed without doing anything. Planning a staff routine with set times is not always a good way to proceed, and yet without that timetable the system breaks down.
There is only so much the state can do to run the care system and monitor the private care that we pay for. They need to look at funding and a fair system of financial support for the family. They need to coordinate private and public resources and they need to have enough of each to make the system work without over stretching those within it. They also need to have a robust monitoring system in place to ensure that carers care and don’t neglect their patients. With so many demands on health care in the U.K. it isn’t surprising that dementia has to take its place in the queue for attention. I hope that the various pressure groups can persuade the government to act, but also think about what it is they want from the care/NHS for the frail and elderly. In a caring society these people are as important as anyone else. Many have contributed a great deal to it in the past and are entitled to something back.

One of the first questions I asked the consultant before embarking on a course of new medication was, is this going to prematurely kill off any brain cells? He assured me it wouldn’t.

Dementia is still not officially recognised as mental illness, except to define it as co-morbidity, a cognitive disorder that affects not only memory, but also mental thoughts and mind perception, which essentially is what it does, as those who care for its unfortunate victims will identify with and verify.

Research into this debilitating illness is ongoing, involving genetic predisposition, any latent underlying mental health problems, the amount of drug induced substances, prescribed or otherwise, including the amount of alcohol consumed or cigarettes you smoke and the level of chronic stress encountered during your lifetime. Whatever the source, there has to be a trigger that sets the wheels in motion causing the premature acceleration of brain cell destruction.

Until that trigger is identified, dementia suffers will continue to be cared for and treated in the same way as patients with a physical disability, in the early stages by their relatives, who continue to struggle, through attachment and/or devotion, and perform a duty that should be the responsibility of the NHS.

Special psychiatric units should be made available, with trained psychiatric nursing staff to cope with the advanced stages of the illness, instead of its victims conveniently scuppered off into nursing homes to be cared for by unqualified support workers who are paid a meagre wage to treat a disorder they are not cognisant of, and who will often resort to physical assault to cope with and contain related behaviour associated with this terrible end of life disease.

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 know a young care worker who lives locally. He lost his council funded job due to cuts and now works in the private sector. He is very poorly paid and has little choice other than to live with his parents. I met him recently, for the first time since early 2020 and he told me how he is struggling. As Vynor has said, we don’t know what is round the corner for ourselves. It would be good to know that we are not being cared for by people on the minimum wage – or less. https://www.kingsfund.org.uk/blog/2020/12/careworker-pay-national-living-wage-not-enough

In a country where we now have 171 billionaires, perhaps its worth rewarding those that are doing some of the more important jobs.

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 ÂŁ800-ÂŁ1,000 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.

Patrick Taylor says:
22 May 2021

“How common is dementia Research shows there are more than 850,000 people in the UK who have dementia. One in 14 people over the age of 65 have dementia, and the condition affects 1 in 6 people over 80. The number of people with dementia is increasing because people are living longer.” NHS

Unlike Beryl I believe there are several triggers, and of course several types of dementia. There is a lot of research in progress and I am hopeful that some types of dementia will be treatable before 2030.

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.