16 Dec 2014

People with dementia need friends – especially at Christmas

A couple of years ago I interviewed the wife of a man who had Lewy bodies dementia. They were both in their early 60s and had met through their local church.

I mention that last fact because what has forever stayed with me is the wife telling me how they had, effectively, been abandoned by their friends in the congregation when he developed the disease.

It was not that these people were cruel or heartless. More likely it was that they were scared. Terrified of madness, frightened by behaviour that might not be “normal”.

This broke the wife’s heart. The church had been central to their lives, had provided an important, supportive community. Suddenly, though, it was not longer there.

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What brought this to mind is a report today from the Alzheimer’s Society which found that 49 per cent of those caring for somebody with dementia believe Christmas is an isolating time for people with the condition.

It also found that two-thirds of people with dementia receive fewer invitations to Christmas events and 71 per cent of people affected by dementia think a lack of understanding has caused people with dementia to be left out at Christmas.

More recently, I interviewed the husband of a woman who had early onset dementia. She was about 49 when the symptoms began to show and was diagnosed four or five years later.

Again, we spoke about many things like the difficulties in getting a diagnosis, the pain of seeing someone you love turn into an entirely different person – in this case, someone who was angry, disinhibited, obsessive. She became a person who no longer kept herself neat and tidy.

And her husband mentioned the loss of their social life. Where once they had loved going to dinner parties or having friends over, that stopped.

He said people did not know whether he could come out by himself and so did not ask at all.

So today the Alzheimer’s Society and Public Health England are using the opportunity of Christmas to encourage people to become “dementia friends”.

A dementia friend is taught a little of what it is like to live with the condition and how they can support that person. I have done a similar course, and it is enlightening and humbling and makes you see a person with the condition through very different eyes.

For a start, it reminds you that behind the condition there is a person – it encourages you to see the person and not just the disease.

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For more about how go become a dementia friend, go to the Alzheimer’s Society website

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