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Busting the Myths of Dementia
Alzheimer's Day provides an opportunity to raise awareness, provide support and demystify dementia. The impact of Alzheimer's Day is increasing but there is still lack of information surrounding dementia. Louise Morse, co-author of Dementia from the Inside writes about the common myths of dementia and explains how the biggest hope is to have accurate information and acting on it.
‘The Truth Shall Set You Free’, especially when it comes to dreading Dementia.
If I had a £ for every time I’ve been asked, is Dementia the same as Alzheimer’s, I’d be a happy bunny. No it isn’t, is the answer. Dementia is the name given to the symptoms that result from physical damage to the brain, and Alzheimer’s disease, is just one of around 100 different causes and the largest.
Time and again I’m surprised at how little is known about dementia. A woman whose husband had died from the disease raged to me that she had been so unprepared, and had been so ignorant because no real information was ‘out there’. Yet there are thousands of books and websites and media stories about dementia: like most of us, she ignored them until the disease impacted her life. And why not? Who wants to read about a disease that seems to be the most dreaded of all? It’s this ‘not knowing’ that has led to increased fear, misunderstandings and myths about dementia.
It was to discover the facts about dementia that I chose it as the topic for my Master’s research (I’m a Cognitive Behavioural Therapist) and wrote my first book, Could it Be Dementia: Losing your mind doesn’t mean losing your soul.’ It shows how the person remains, and that when personalities appear to have changed it is because of damage to the brain. I was amazed to find some ethnic groups put it down to demonic possession. My book was one of the few to put the understanding of dementia within a Christian context. I noted then that the dread of dementia was equal to the dread held about cancer 25 years earlier and predicted that as the dread diminished as cancer became more treatable, so it would with dementia. Eleven years later there is still no cure for dementia, but the few medications available do make life changing differences for many. For example, they enabled Dr Jennifer Bute, the former GP now living with dementia (whose book ‘Dementia from the Inside’ I wrote,) to speak fluently again.
In our educated Western world many myths have been demolished. We know that dementia is not an inevitable part of ageing. We know, too, the dementia is declining with better lifestyles, although this is not blazoned through the media as well as it should be. Every media story says that in UK 850,000 are living with dementia, but the number of people diagnosed is 537,097 i. Why the big difference? The higher figure is from projections made in the 1980s that have not been realised –the incidence of dementia (that is new cases) has fallen by 15% over the last two decades ii. The old figures do not reflect the results of changes in life expectancy, living conditions, and improvements in health care and lifestyle, according to Professor Carol Brayne, of public health medicine at the Cambridge Institute of Public Health iii. The biggest hope, and the biggest myth-buster, is having accurate information and acting on it.
i See https://www.dementiastatistics.org/statistics-about-dementia/prevalence/
ii https://www.hsph.harvard.edu/news/hsph-in-the-news/dementia-rates-falling/
iii https://www.medicaldaily.com/dementia-epidemic-improved-health-care-and-lifestyle-lead-fewer-diagnoses-growing-349044
Louise Morse works with the Pilgrims’ Friend Society, is a speaker and has a background in journalism. She is author of Could it be Dementia? (2008), Worshipping with Dementia (2010:), Dementia: Frank and Linda’s Story, (2010) Dementia: Pathways to Hope (2015) and What’s Age Got to Do with It? (2018).
Jennifer Bute was a highly qualified senior doctor in a large clinical practice, whose patients included those with dementia. Then she began to notice symptoms in herself. She was finally given a diagnosis of Young Onset Dementia in 2009.
After resigning as a GP, she resolved to explore what could be done to slow the progress of dementia. The aim of this practical book is to help people who are living with dementia and to give hope to those who are with them on the dementia journey.
Jennifer believes that her dementia is an opportunity as well as a challenge. Her important insights are that the person ‘inside’ remains and can be reached, even when masked by the condition, and that spirituality rises as cognition becomes limited.
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