Alzheimer's Society Campaigners' Network

Campaign Group Member, Sheffield

Why do you campaign for Alzheimer's Society?

When my mother died it fell to me to look after my father, who had more severe vascular dementia than I had realised. Like many partners, my mother had hidden the problems from other people, even their GP and her own family. I was completely at sea. I appealed to the GP, who had my Dad seen by a psychogeriatrician, who confirmed the diagnosis. After that we were on our own. Social Services tried to fob us off onto the NHS. The NHS batted us back to Social Services. The GP did his best, but he was not an expert. In desperation I rang Alzheimer's Society. In the almost three years that I cared for my Dad they were the only people who seemed to understand the problems and were able to give me advice. When my father died I decided I needed to put something back and campaigning to get a better deal for people like my Dad and their carers seemed a good route to take. I have now been involved for about two years.

What does your role involve?

I am a member of Sheffield's Campaigns group. The group meets once a month and we have, so far, piggy backed on other campaigns, making them more relevant locally, e.g. Worried about your Memory. The time we spend depends very much on what is needed at any particular time. Personally, I would like to see our group talking to people with dementia and their carers on a regular basis to try to establish what exactly is needed locally to make their lives better. Having established the needs our group could then try to make some real impact locally.

What skills and qualities does a campaigner need to have?

To campaign I would say you need to have a real belief in what you are doing, dogged determination and endless energy. There will be setbacks, but, if you are passionate in your aims, you'll overcome those, in fact they will strengthen your resolve.

If you have been affected by dementia and want to help, then go for it. Sometimes bureaucracy gets in the way, and communications could be better but, with an ageing population, we are all going to be touched by dementia at some time in our lives, so getting the government to recognise they need to act is really important. Alzheimer's Society have provided me with media training (how to avoid pitfalls whilst using the media to its full advantage), but probably the best training I have had was the dementia awareness training, something I feel should be mandatory for everyone. Maybe, if we all realised the impact it has on people's lives, we would all treat dementia patients and their carers differently.