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The Future of Dementia Care: Why We Need to Talk About It Now

Clients of elderly care center Maria-oord in Dongen are having coffee in the morning.Image Marcel van den Bergh

The Council for Public Health and Society recently warned that future health care costs are becoming unsustainable. The care costs for people with dementia will be an important part of that. In the Netherlands, approximately 300,000 people live with dementia. This is estimated to double to 620,000 in 2050 due to the aging population. People with dementia require daily support and ultimately often require intensive nursing home care. That is expensive.

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Jan Willem van Dalen is a postdoctoral epidemiologist at RadboudUMC.

This is a submitted contribution, which does not necessarily reflect the position of de Volkskrant. Read more about our opinion piece policy here.

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Fortunately, a number of scientists prophesy the coming of a savior. From July 16 to July 20, the largest dementia conference in the world was held in Amsterdam. There has been a lot of discussion here about the latest generation of Alzheimer’s drugs. Some will praise the future possibilities to the skies. But science is unlikely to solve this problem. We need to talk about dementia.

That seems crazy. Because dementia has received a lot of attention in recent decades. Scientists have been sounding the alarm for years. There is a warning that a ‘tsunami’ of dementia cases will engulf society. The government invested
50 million in one Delta Plan Dementia. On annual Alzheimer’s Days, enthusiastic scientists and sad films ask for donations for research. It is emphasized that dementia in old age is a disease. Dementia was once called ‘senility’ and considered part of aging. But that is not it. It’s a disease that most people who get old enough get. Fortunately, diseases can be cured. In ten years there will be a cure. Provided there is enough money for research, of course.

Medicalisering

All this attention generates research money, but also negative consequences. Comparing dementia to an impending natural disaster and emphasizing the tragedy for patients and those around them leads to stigma and frightens healthy people. Especially in the elderly with normal memory complaints, which are indeed part of aging. Also, the endorsement of senile dementia as a disease has drawn the problem to medicine.

Mental decline in old age has gone from being a social phenomenon that everyone has had to deal with at some point in their lives, to a problem that the health care system has to solve. Citizens and politicians hope to buy a solution. For thirty years now, promotional stories about a near breakthrough and ‘within ten years there will be a medicine’ contribute to this. By the way, without result.

But now there is a breakthrough. A recent study suggests that the new drug Lecanemab can slow down the decline in people with dementia. The researchers involved claim: by as much as 30 percent. But other scientists are critical. According to them, the difference after a year and a half of treatment is imperceptibly small for patients and their caregivers. In addition, one in eight participants developed a brain swelling with edema, the short- and long-term consequences of which are unclear. The drug Donanemab has now also been presented at the Alzheimer’s Congress. It gave similar results, bar some more side effects, and is expected to cost about the same as Lecanemab.

Cost

The financial pressure on healthcare is really not reduced by Lecanemab. The pharmaceutical company asks 25,000 euros per patient per year. Not exactly a saving for the healthcare budget. Partially slowing down a decline is not the same as stopping it, let alone curing it. The aim is to prevent dementia from ever developing in healthy elderly people. But does this remedy do that? Is it safe? And who should get it? Should all elderly people be screened to see if they fit the drug? Should the chosen ones also receive a biweekly infusion and be continuously monitored with expensive MRI scans, because of possible side effects? That is a priceless and logistical nightmare.

Demonstrating that a drug can prevent dementia, and setting up the necessary infrastructure for this application, will take decades rather than a few years. And then again. Suppose there is a drug that can prevent 30 percent of all dementia in the elderly, how will that work out? In the Netherlands, 3 million people live over the age of 65. Of these, 1.2 million will develop dementia at some point. Suppose we detect them with a perfect test (which does not exist) and treat them preventively at 25 thousand euros per year, that would cost 30 billion euros annually: a third of the healthcare budget just for the medicine itself. Costs for the screening, administration and control of the treatment are not included. And then in 2050 there will still be 430,000 people living with dementia who need dementia care. The savings are disappointing.

Approach

That doesn’t mean the chance of a drug should be written off. Research is certainly important. But it is essential to take into account that the expected increase in dementia cases will happen anyway. We need to talk about dementia. What can we do now? We believe that living a healthy lifestyle, preventing diabetes, and controlling and treating high blood pressure reduce risk.

But the solution does not lie only with doctors. We need to approach old-age dementia as a social problem. With aging, the body deteriorates. That includes the brain. There is nothing wrong with that. A smart society offers the elderly more help, structure and social cohesion. Dementia is more likely to emerge in people who miss it. With an average duration of illness of five years after diagnosis, every six months of delay leads to 10 percent fewer people living with dementia.

complicate

Meanwhile, we do just about everything to make self-reliance in the elderly more difficult. Human contact is declining. Banks and post offices close. Finance, government affairs and social interaction must be online. New skills are difficult to learn quickly in old age. The government refers those in need to the libraries, which are now closed throughout the country. The elderly often continue to live in too large, old family homes due to a lack of senior housing and the stigma associated with old age.

We can also prepare society better by building homes and neighborhoods for the elderly where appropriate facilities, social interaction and care can be organized more easily. That does require us to think differently about the disease and aging in general. That’s why we need to talk about dementia now.

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2023-07-23 13:00:41
#Opinion #solution #dementia #lie #doctors

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