I heard a pretty shocking statistic at yesterday’s Alzheimer’s Society conference. Two thirds of people living with dementia NEVER get an official diagnosis; if that same statistic applied to the diagnosis of cancer, and as a result two thirds of people with cancer died having never been offered any treatment, the country would be in uproar.
So why the silence on dementia? There is a commonly held misconception that since there is no cure, there is no point in diagnosing someone with dementia. However, just because you cannot stop someone dying with dementia eventually does not mean that you cannot help them live well with it in the years before their passing.
My father was ‘fortunate’ in that he had an official diagnosis of vascular dementia, and as a result had access to specialist care for the last 9 years of his life. His diagnosis, however, only came when his dementia had progressed to a point where he needed to live in a care home. Prior to that, he had lived with dementia for about 10 years, under the noses of his GP, social services and even had a home visit from a Consultant Psychiatrist specialising in old age mental health.
We later learnt from the Psychiatrist himself that he had identified dad’s dementia during that home visit, but had been ‘unable to do anything until a crisis point occurred’. Said ‘crisis point’ duly arrived when we found dad collapsed at home; he had been on the floor all night as a result of a stroke. He was confused, disorientated and unable to move. Without a family to look out for him and check up on him, my father may well have remained on that floor and frozen to death.
From the many accounts that I have heard, things have improved since our experiences of dad’s diagnosis. Back then we didn’t have memory clinics, there was much less awareness amongst GP’s, and a lot less information available to us as a family. We had to fight for everything, and despite the improvements in many people’s experiences over recent times, there is an urgent need to streamline services across the country to ensure people do not suffer the dreaded postcode lottery when they seek help.
If a person lives with dementia for years, slowly declining, putting a massive strain on the person(s) caring for them, being at huge risk of getting into situations that put themselves or others in danger, and requiring emergency hospital admissions, then the system is failing, badly. An earlier diagnosis should enable people to live well for longer, provide support to their carers and ultimately avoid costly hospital admissions, so in theory it should be popular with policy makers. IN THEORY.
Supporting people to come forward and seek help will be one of the most significant obstacles to overcome. Individuals experiencing memory problems, confusion, lack of reasoning, difficulties in completing tasks they previously found routine, getting lost in an otherwise familiar neighbourhood, or hiding/misplacing or mixing up things around the house are often in denial about their problems or manage to successful hide them for a long period of time.
I am a firm believer that information is power, however, and that if those experiencing symptoms and their loved ones are informed they will feel more able to come forward and seek help. It must also be borne in mind that the older generation will often have very negative viewpoints of dementia based on the stereotypes that they grew up with. Busting these myths and showing how modern society can support people living with dementia, will be a big part of giving those with symptoms and their families the courage to speak up, and when they do, we need a UK-wide dementia service that is ready to support them.
Until next time…