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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3 reader comments

  1. john. worthington says:

    Victoria, I’m afraid this kind of ignorence will never alter regarding the diementia problem. I had 19 years of this kind of thing when caring for my sweet Wife after her decent into the pit of despare. She passed away on our 55 th wedding anniversary in Sepember 2013. So now i’m completey alone.
    Why People think that Christmas is so important to those unfortunate folk I will never understand. They need recognition every day, not just once a year !
    Keep in mind that the person who is caring for those with dementia are mostly the ones who are the sufferers because the `patient` , Loved one, isn’t aware of what is going on. My task from that sad day in 1995 onwards was to attend to everything because my sweetheart was incapable of doing anything at all, Toilet, dressing, cleaning, Spoon feeding was also necessary. No verbal conversation at all. Oh so many sad memories in the long list in the `Long Goobye`. Now why say “Merry Christmas” Knowing that just isn’t possible ?

    1. Christina says:

      Dear John ,I have just read your letter, I know how you must have felt nursing your wife,nobody understands untill they are in the position you are in .You must have family to support you? . Dementia is the worst type of pain for the family ,we all have a story to tell …you write to me if you need to talk …all the best
      Christina

  2. H Statton says:

    For many people dementia is still one of those diseases that are given a wide berth by the General Public. The thoughts among peoples’ minds and fears and the feeling of utter helplessness in a way which they could make themselves useful, even it is in a very small way. Most difficult is, dealing with the odd, uninhibited, behaviour of patients who are powerless to control it. The person has the disease – that is the take home message.

    We have people relying on food-banks, second-hand clothes, and even the homeless are being discouraged to sleep beneath shop doors and front windows. Spikes have been placed in the enclaves around their buildings to discourage the unwanted sheltering.

    My older cousin Andy, aged 63, was diagnosed in September with triple brain tumours. He didn’t mention the fact until last week or so (that is typical of Andy, not wanting people to worry. He has since been transferred to a hospice where is well looked after. He was totally unable to cope at home). He is terminally ill, having now seen the cancer proliferate through his lungs, liver, bones, and brains.

    In the Hospice he can have clean clothes, a bath, and he has lots of company, and round the clock-care. No-one knows how much time we have left with him, but we’re all hoping he’ll make it through Christmas and into the New Year.

    On that last note, I would encourage everyone to contemplate signing up for ‘dementia friends’:

    dementiafriends.org.uk
    http://www.dementiauk.org/‎

    And probably the one organisation you’ve probably seen most on the TV is:

    https://www.dementiafriends.org.uk/ (which is supported by the Alzheimer’s Society.)

    It is quite simply to become involved in, this is the header page:

    https://www.dementiafriends.org.uk/

    You get watch a person trying to recall her day and some of the difficulties she faces in doing so. But you are also encouraged to attend a local group ‘information meeting’. And you also receive “The Little Book of Friendship”.

    So, become a dementia friend today!

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