Dementia: time to make room for hope

Last week the Alzheimer’s Society predicted half a million people would have undiagnosed dementia by 2021. Without a diagnosis, the society says people with dementia will not be able to access the support they need. They say the key is to raise awareness so that symptoms will be more readily recognised and diagnoses sought without delay.

My granddad had Alzheimer’s. I saw what the disease did to him, how he forgot who I was and eventually forgot who he was. I also witnessed the effect that it had on my mum. “If you can’t laugh, you’ll cry” became her catchphrase.

But despite this close experience of dementia, I have never once seriously considered that I may develop dementia too. And any thoughts I have about it affecting my parents are quickly squashed and buried. I don’t look out for signs, I positively ignore them.

The thing is that it’s all too easy to think of a dementia diagnosis as an early death sentence. I’m tempted to cover my ears and shout “I’m not listening!” whenever anyone mentions the ‘d’ word.

Dementia’s presence in the media is all doom and gloom. You’ll lose your memories, your faculties and your independence. There doesn’t seem to be much room for hope.

But I know this isn’t true. People like Terry Pratchett are fine examples of what life with dementia could be like. And I enjoyed many trips to visit my grandad after his diagnosis, and I like to think that he enjoyed seeing me too, even after his memory had begun to unwind.

Maybe what we need are more positive examples of life post-diagnosis, examples of how the quality of life of patients can be maintained. A Nursing Times reader, commenting on dementia and innovation, mentioned a scheme where people living in a residential unit took part in their own care. They made their own beds, fetched their own breakfast and tidied away their own laundry. The results were dramatic, many were taken off psychotrophic drugs, nighttime activity was reduced and residents and staff felt happier.

With a less fatalistic view of dementia, maybe more people would be willing to engage and talk openly about the disease. Maybe more doctors and nurses would be willing to suggest an early dementia diagnosis. Maybe care for people admitted to hospital for different conditions, but who have underlying dementia, would improve. Maybe more government money would be invested in researching the disease.

If there is hope.

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