With the launch of the UK Government’s initiative to increase early diagnosis of dementia, more people than ever before may well be persuaded to raise concerns with a loved one about changes in their behaviour, ability to look after themselves or their memory which may indicate to a family member that their relative has the beginnings of dementia.
It is a conversation that no one wants to have; it is seen as a highly sensitive, emotive subject that has long-term implications if a suspicion of dementia is proved correct. Much of the fear is due to the stigma that surrounds dementia, and discussing it can bring up feelings of being helpless and worthless, indeed it may even be construed as a death sentence.
In many of these conversations, the ‘D’ word is often omitted altogether. Commonly people simply refer to ‘memory problems’ or ‘needing extra help as you are getting older’. There is a fear around dementia (that I wrote about here) that once engulfed cancer to the extent that the word is almost seen as something that should never be uttered, as if saying it means you will develop it.
The work that has been done to raise awareness, battle stigma and provide hope for the future has taken cancer out of the shadows and into the mainstream, and now the same must happen with dementia. Such work takes time and patience, however, and for people who are older and have spent their whole lives living with a particular viewpoint, changing perceptions and ending the stigma is particularly challenging.
Often a conversation about changes in your loved one that you feel could indicate dementia can produce a very defensive response from the person themselves, or even from other family members who do not share your concerns. Broaching the subject with your loved one carefully is vital, and from there providing constant reassurance and creating a discussion that is non-judgemental, sympathetic and focused on making a positive plan for the future is important to diffuse any anger, resentment or upset.
In some cases people with the early symptoms of dementia can have a high level of awareness about what is happening to them. They may well notice changes but either dismiss them, deny it to themselves or become secretive to disguise the problems that they are having from those closest to them, something that is particularly common in people who live alone. My father managed to make much of what he was experiencing look like eccentricity rather than dementia, partly through our naivety about dementia but also because his pride, independence and desire for privacy triumphed over his need for help.
As a result of these factors, he went ten years without a diagnosis (as I wrote about here) and when that diagnosis finally came, his dementia was significantly advanced to a point where the professionals caring for him decided that he could no longer remain at home. I was asked recently in a radio discussion if I would have preferred my father to have had an earlier diagnosis. My answer was a resounding yes. I believe that with earlier care and support, a healthier lifestyle and therapies to engage his mind and stimulate his passions and hobbies, he could have lived well with his dementia for longer and the ‘crisis point’ that brought about a very rapid decline in his condition could have been completely avoided.
Thankfully we know so much more about dementia now than we did then and slowly it is seeping into the public consciousness. If you are reading this blog as someone concerned that your loved one is showing signs of dementia, my advice is to be brave, find all the kindness and love within you and gently go about discovering whether your instincts are correct or not by supporting your loved one to seek medical advice.
It is important to stress that the symptoms of dementia are also attributable to other conditions, which is why dementia can sometimes be difficult to diagnose for clinicians. Those of us with extensive experience sadly often spot it in people we meet long before that person ever seeks help. Indeed some people still die with dementia having never had a diagnosis or any treatment, something that would be considered a scandal in other areas of medicine.
I sincerely hope that anyone seeking help in this age of greater dementia awareness is met with a sympathetic GP who offers kindness, encouragement and, should a dementia diagnosis prove the outcome, hope for the future and a positive action plan. A diagnosis is just one stage in the dementia journey and certainly should not be seen as the beginning of the end. Living with dementia, rather than dying from it, has to be the reality that accompanies every dementia journey, and when that becomes the norm, those impossibly tough conversations may just be softened slightly.
Until next time...
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