Why We Should All Be Friends With Dementia

“We’re positive, aren’t we?” 

Those were the words my father spoke at his 70th birthday party, a surprise party we’d thrown for him a month after he’d been diagnosed with Non-Hodgkins Lymphoma in 2008. We were positive but, sadly, the power of positive thought counted for little on this occasion. The disease had taken too firm a grip by the time it was discovered and Dad died less than three months later.

I uttered the same words when Mum’s Alzheimer’s diagnosis was confirmed a few weeks after that and though there have been tears and even the occasional “it’s not fair” tantrum, I think we’ve maintained a positive outlook in the five years (almost to the day) since then. Sometimes it’s very hard to find the positives in this situation but there is one I can easily identify: The care and support of others, some of whom I know and some of whom I’ve never met in person. Dementia, it seems, brings people together.

A couple of weeks ago, I became a Dementia Friends Champion at a training session in Coventry. Dementia Friends is an initiative of the Alzheimer’s Society. Its ambition is to help one million people understand the condition better and by turning that understanding into action, however small that action might be, to create dementia friendly communities.

Now, I’m excited and not only because I passionately believe that by raising awareness, we can make the world a better place for people living with dementia. That’s reason enough but I’m also excited because, despite being what some might call a sports fanatic all my life, it’s the first time I can call myself a champion. I don’t have a medal or a trophy but you can’t have everything.

As a Champion – the role is voluntary by the way –  I’ll organise and deliver Dementia Friends sessions to anyone who’d like to know more. I’m free to anyone who wants me, and that’s something I never thought I’d write in this blog. And there is so much more to know and so much more to understand. 

Someone asked me recently how I felt when Mum was diagnosed. It’s not an easy question to answer because there are many conflicting emotions. Fear of what the future holds but also relief that we finally had a diagnosis. Concern about how we as a family would cope but also comfort at the support and love of Mum’s friends. These feelings were shared on BBC 5 Live last week when Victoria Derbyshire devoted her radio programme to the subject of dementia. It was heartbreaking to listen to in parts – especially the story of two brothers who care for their father. Here’s a short extract:

http://www.bbc.co.uk/programmes/p01rmr63

Perhaps you can’t fully understand the impact of dementia until you’ve lived with the disease although being a carer gives you a reasonable insight. This radio programme was the next best thing, though. Powerful, heartbreaking and yet positive – all part of the dementia story. I was struck at the sense of initial isolation felt by all of the people interviewed here and also in a BBC Radio Scotland programme about my friend Tommy’s Concert for Carers which was also broadcast last week. So many stories, so many different experiences but so many common themes.

It’s these themes – like that sense of isolation – which Dementia Friends is aiming to address. By making people aware, we can make our communities more dementia friendly and better to places to live for all of us.

I longed to tell Mum about becoming a Dementia Friends Champion but as I did so, I could tell that it meant little or nothing to her. Mum was a serial volunteer in her day – meals on wheels, hospital coffee shops, village activities. At one time she was active is a parent teachers association at my first secondary school. As a shy, retiring sort, I wasn’t best pleased at this. At the age of 11 and 12, keeping a low profile was high on my agenda and Mum buzzing around selling raffle tickets wasn’t part of my plan. But Mum cared about trying to make things better for everyone. If the last few years had turned out differently, she’d have listened attentively to the dementia programme on 5 Live and perhaps would have been inspired to become a Dementia Friend herself. I hope so.

If you want to know any more about the Dementia Friends initiative, go to http://www.dementiafriends.org.uk/. Alternatively, if you’re in the West Midlands and you’d like to become a Friend, let me know. You’ll get 45 minutes of my undivided attention and a badge – go on, you know you want to.

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6 Responses to Why We Should All Be Friends With Dementia

  1. Janice Connolly says:

    Hi Duncan – thank you for posting this – hopefully it will encourage others to do the same.

    Janice

  2. SueENG says:

    Families dealing with dementia need lots of support and advice so Dementia Friends are very valuable. However I feel the crux of the matter lies with the Government. At the moment they are just giving piece meal, skimming the surface of the situation. Here is what I would ask of them 1) A fair one rule for a all regarding the financing of residential care homes, 2) to involve the Food Standards Agency in looking into the way our food is produced for the modern diet and how this might be playing a part in the increase of dementia 3) to look into the causes of dementia as well as finding a cure. I have gone past the sentimental phases of how tragic and sad I am for my mum. I am now angry and want the Government to grow some balls and recognise the dementia crisis for what it is and how it is impacting everyone.

    • Well said Sue. I couldn’t agree more. Words mean little – it’s all about deeds and as we’ve seen with the current flooding crisis, the government can find money when it needs to.

  3. Jayne Hull says:

    Hi I have recently become a Dementia Friend and also volunteer at a Dementia cafe once a month. My lovely mum is also living with dementia,since being diagnosed with Alzhiemers two and a half years ago and its like living on a roller coaster of emotions and I have struggled along with my siblings, so by volunteering I feel I am not only helping her and my Dad who is caring for mum at home, but helping others and bringing this condition to the forefront of every day life, whether they have personal experience or not or not,as I think everyone should be aware of the impact that this disease makes not only on our immediate family, but the community at large!

    • Thanks for leaving a comment Jayne. Like you, volunteering helps me to make sense of dementia and together we can make sure that in the future, those whose lives are touched by dementia won’t be faced the same challenges we were.

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