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Tommy’s quest to raise awareness of dementia

Tommy Whitelaw

For years, Tommy Whitelaw travelled the world running merchandising operations for U2, Kylie Minogue and the Spice Girls. But it all came to an end when Tommy became a full-time carer for his mum, Joan, who was diagnosed with vascular dementia. Sadly, Joan passed away in September 2012 and, since then, Tommy has travelled all over the UK on an awareness-raising campaign. On Wednesday, he was in Belfast speaking at the Caring for the Carers workshop hosted by the Patient and Client Council and the Northern Ireland Confederation for Health and Social Care.

At the time my mum was diagnosed with vascular dementia, I looked at her and thought to myself: ‘It’ll be OK. We’ll get through this.’ What I soon learned as her carer was that dementia was an unpredictable illness that brought many challenges and forced us to adapt to ever-changing routines.

Many days we would wake up to discover that everything we had grown accustomed to had suddenly changed again.

I wondered whether the struggles I faced were mine and mine alone, and how other carers who had been through the same journey as I was embarking on had managed to cope.

This was the basis behind my first venture into the world of awareness-raising – the ‘Tommy On Tour’ campaign, which involved collecting life-story letters from people caring for a loved one with dementia.

The hundreds of letters I received made me realise that the challenges I faced were far from unique to my own situation, and I have to say that meeting and speaking to others in the same situation was one of the most beneficial things I could have done.

An issue that struck me during my journey caring for my mum was the lack of awareness and understanding of dementia, and the way in which we perceive this illness as a wider society. 

My door was always open, but no one walked through it. People didn’t come to visit us anymore and I truly believe that this was down to the stigma surrounding the illness.

Everyone affected by dementia has a unique story to tell and by sharing our experiences we can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation.

This is something I am passionate about promoting as I build on my previous awareness raising work as Project Engagement lead of the Health and Social Care ALLIANCE’s Dementia Carer Voices Project.

Dementia Carer Voices has now gathered nearly 15,000 personal pledges as part of the “You Can Make a Difference” campaign. The campaign encourages people to listen to the experiences of people who have cared for a loved one with dementia and to think how they can make a positive difference in people’s lives.

You can do this via email, Twitter @DementiaCarerVo or on the blog site. We would very much appreciate it if you would promote this campaign to encourage people to reflect on what they can do and how they can make a difference.

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A Gamble 19-Sep-2017 at 23:32 hrs

My mother had frontal lobe dementia initially when she was 80 years of age which meant she did things she would never have done normally. Before then she had been angelic. I did not know she had dementia when she became hooked on scams and spent thousands and thousands of pounds on rubbish items, etc. and hiding scam letters everywhere in her house, even her oven. This went on for 6 years and I could not stop my mother. Initially I wrote to her GP asking for his help - his reply was if your mother doesn't admit she has a problem I cannot do anything about it. Two years later when my mother went to visit my brother I was in charge of her mail. I divided all the scam letters into 4 groups - 1. UK scams, 2. Rest of the World Scams, 3. Clairvoyants, and 4 others like Loan Companies. The GP only agreed to do something when I took him scam letters from clairvoyants with their eyes lit up which was frightening. Also letters stating that my mother was having therapy from them and the cost involved. The GP referred my mother to a Psychiatrist, who then referred her to a Psychologist. In advance of the appointments I wrote my mother's history and after 2+ years of counselling from a Consultant Psychologist my mother returned to the angelic person she had been before the scammers contacted her. It broke my heart to see this happen to my mother. My mother still had dementia until she died at 97 years of age but she retreated into her own little world which was better for her.