The Fear of Dementia

The Fear of Dementia

These days you don't have to look too far to find the latest opinion on Alzheimer's disease. Things you should do or must not do for your best chance of avoiding it. Maybe these things will help, but I am concerned that the fear of a diagnosis will put people off reaching out for help. Fear has a long standing reputation of making people act against their best interests. 

Below Jonathan gives his thoughts on his fear of dementia:

I’ll be honest - I’m scared of getting dementia. I have quite an interesting perspective on this, as I work (as an activities coordinator) in a secure dementia home, part of a rest home. The people we care for are cared for extremely well. The caregivers and registered nurses are fantastic. The food provided by the cooks is varied and high quality. The living environment is bright and comfortable.

So with all the positives, why wouldn’t I be reassured? If I were to be diagnosed with dementia, such as Alzheimer’s, and at a later stage live in a home similar to this one, I should be confident. 

Part of it, maybe, is the thought of being a burden on others. On loved ones. Of losing my independence. Of losing control - although I am married! ha ha.

My parents-in-law, touch wood, are living the sort of retirement we should all aspire to, with travel, family get-togethers, walks to the nearby beach. But the numbers of people living with dementia are set to rise in the future, and despite reports of “breakthroughs” from scientists, there doesn’t seem to be much in the way of treatment for the condition. 

I read reports and adverts saying particular foods will stave off dementia; that living a certain type of lifestyle will similarly help. But dementia seems to affect such a wide section of the community. I’ve known, for example, teachers, doctors, engineers, architects, lawyers, and the list goes on. I cannot believe it is related to how much you have used your brain throughout your life. 

The predictions of increasing numbers to be affected by dementia in the future is shocking. Part of that may simply be that we are living longer lives, and dementia may affect us in our older years. But I’d like to find out the basis for the dire forecasts we are hearing. Maybe it won’t be as bad as we are led to expect.

I don’t like how forgetful I am sometimes, although my wife reminds me my medications are most likely to blame. Whatever it is, I should be reassured about the future for people who will develop dementia. I should be reassured about them being looked after in residential homes, many of them looking more like luxury hotels. But I’m not. 

I want to grow old with my wife in our little house and have a happy retirement. I think I will stick my head in the sand about the possible bad health that can hit. My parents died from cancer before enjoying retirement. Who knows? Enjoy today.

- Jonathan

Of course a diagnosis of dementia is a reasonable thing to be afraid of. As Jonathan points out statistics suggest the number of New Zealanders living with dementia is on the rise. Dementia is not the only diagnosis that fills us with fear. The problem always comes back to the fact that we are mortal. We only live until we die, and the longer we live the more likely we are to become dependent in some way.

It’s ok to have some fear. But let’s not put our heads in the sand, like Jonathan suggests. An early diagnosis gives you the best chance of treatment that could delay the effects of the condition.

Let's not join together in mass hysteria either. Wouldn’t it be more productive to use that energy in finding ways to include people with dementia more fully into our society and lives? We've already seen examples of people being uplifted with music, poetry, lighting and animals - people who seem lost become animated, their faces light up and they become engaged and alive.

We need to keep looking for new ways to connect, remove stigma, and enjoy each other’s company.

How do we talk about becoming elderly? We say “I don’t want to become a burden”. But people aren’t burdens. People become dependent and we need to work out how to share the load more.

A diagnosis of dementia doesn’t necessary mean an end to quality of life. People around the world live amazing lives with all sorts of conditions that you couldn’t imagine yourself coping with. But people do, they want their turn, life prevails.

An easy example I can think of is Helen Keller (1880-1968). She was born blind and deaf. Even now I find it almost impossible to imagine how I could have any quality of life with these two conditions together. But she did, she had an amazing life. This is because someone believed that she could, and they invested the time to make sure she had every opportunity for a good life. 

There are so many things we can do now to improve the quality of life of a person living with dementia. We need to think about the way we value people. Taking a slower approach, appreciating the moment, and what brings joy into our lives.

Our ultimate goal, after all, is not a good death but a good life to the very end.” - Atul Gawande, Being Mortal: Medicine and What Matters in the End

Until there is a cure we need to accept for some people dementia is just another stage of life. They deserve respect, they deserve dignity and they deserve us all to invest time to ensure their lives continue to have quality.

The difference between Jonathan's points and my own are he speaks of himself, whereas I am referring to others with the condition. It's so easy to be brave when you are still thinking about someone else. Maybe it would help to start thinking more like this: 

Until there is a cure I need to accept dementia could be another stage of my life. I deserve respect, I deserve dignity and I deserve us all to invest time to ensure my life continues to have quality.

See our Useful Links page for organisations that provide help and information on dementia and brain injury.

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