How to deal with dementia dread

by
04 October 2019

The absence of a breakthrough medically should not cause despair, says Louise Morse

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A WOMAN whose husband had died from dementia raged to me that she had been woefully ignorant and unprepared because no real information was “out there”. There are, in fact, thousands of books, websites, and media stories about dementia — but, like many of us, she had ignored them until the disease made an impact on her life.

Perhaps this is understandable. Who, after all, wants to read about a disease that is among the most dreaded of all? It is this “not knowing” which has led to increased fear, misunderstandings, and myths about dementia.

Time and again, I’m surprised at how little is known about the disease. If I had a pound for every time I’ve been asked “Is dementia the same as Alzheimer’s?” my wallet would be bulging. No, it is not, is the answer. Dementia is the name given to the symptoms that result from physical damage to the brain, and, although Alzheimer’s disease is the biggest cause of dementia, it is only one of about 100 causes.

Eleven years ago, the dread of dementia was equal to that of cancer 25 years earlier. Predictions were that, as cancer became more treatable and the dread diminished, so it would with dementia. But there is still no pharmaceutical cure, although the few medications available do make life-changing differences for many.

 

THE search for an effective drug has been disappointing: there has been no significant breakthrough for 40 years. In 2017, the “amyloid B” hypothesis — the theory that Alzheimer’s is caused by a build-up of proteins on the brain — was largely discredited by the neuroscientist Bart De Strooper, who went on to set up five new centres of research in London and Europe to examine the effects of inflammation on the brain. He said: “We were probably terribly naïve to think a brain disorder like Alzheimer’s disease would be more simple than any other human disorder, because there is nobody who thinks that diabetes is simple, or that cardiovascular disease is a simple thing.”

But good things are happening. In our educated Western world, many myths have been demolished. We know that dementia is a physical disease, and is not an inevitable part of ageing. The science of epigenetics is showing that this is true even for those with a genetic disposition, and that genes can be switched on or off by biochemicals resulting from factors such as poor diet or stress.

A 35-year-long study of men living in a Welsh vale showed that those who stuck to the healthy-living guidelines halved their risk of dementia by 57 per cent (for information, search the internet for “Caerphilly Study, BBC”). We know, too, that the level of new cases in the general population is declining, although this is not blazoned through the media as well as it should be.

The figure of 850,000 for those living with dementia is commonly quoted, but the number actually diagnosed, as of August 2018, was 537,097, NHS statistics show. Why the big difference? The higher figure is from projections made in the 1980s which have not been realised, and do not take into account the fall of new cases of dementia in the general population over the past two decades. It does not reflect the results of changes in life expectancy, living conditions, and improvements in health care and lifestyle, Carol Brayne, Professor of Public Health Medicine at the Cambridge Institute of Public Health, says.

 

IN THE mean time, there has grown a better understanding of how to care for people with dementia, using kinder, more relational approaches. The power of spiritual support for Christians is widely recognised. Many churches have become “dementia friendly”, educating congregations about the effects of the disease on individuals and how to respond.

In my book Dementia: Pathways to hope, I describe a church in Suffolk which welcomed Kenneth, a care-home resident with dementia. He was known as “a runner” because, given the slightest chance, he lopes across the surrounding countryside (on occasion, a search helicopter has been called out).

But Kenneth does not run from church. Next to him sits a “buddy” who looks after him and, calmed by the familiar atmosphere and liturgy, he listens to snatches of the sermon, and sometimes falls asleep on her shoulder. He also sings the familiar hymns. Who can tell how the Holy Spirit is ministering then?

Louise Morse is the author of books on dementia including Could it be Dementia? Losing your mind doesn’t mean losing your soul (Lion Monarch, 2008) and Worshipping with Dementia (Lion Monarch, 2010).

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