Alison Rogan

Ali Rogan, Chair of Alzheimer’s Society’s dementia-friendly technology task and finish group and External Affairs Director at Tunstall, reflects on the Carers Call to Action.

Recently, I spent an emotional day at the Dementia Action Alliance (DAA) Carers Call to Action (CC2A) event. The theme was ‘how we can effectively support the needs and rights of families who are caring for a person living with dementia’. We heard from many people who told their stories – not for sympathy, but for a single desire to make sure action would be taken as a result.

Tommy was diagnosed with dementia at the age of 61. He said: “It was like being kicked in the stomach. I’m too young to have it. I was convinced my life was over. I don’t want to sit in a chair in a circle, asked if I’m ok only to have the person who asked me walk away before I get chance to answer.” He described his wife as having to live many lives now, whereas he just has one.

A common thread throughout the day was that loved ones of those diagnosed with dementia go through a grieving process, learning to cope with loss in such a different way to bereavement and in a sense, a much more cruel kind of loss.

One message was clear, we can’t do it alone. Dementia is the new cancer in terms of public and government support and we mustn’t let it defeat us. However, 20 years ago it was a very different story.

Jean’s dad had dementia and she made the decision to give up work to care for him. She felt there was no alternative and without realising it at the time, this was to affect her future finances and indeed her whole life changed, caring for someone 24/7.

Barbara Pointon MBE then told her story. She talked about how, at 51, her husband had the diagnosis and how, without realising it, she began to treat him like a child, undermining his autonomy and independence. Whilst well intentioned, because there was literally no one to support her, she was giving the wrong kind of dementia care. She recalled the day she spent looking for her handbag. Eventually it was found in the washing machine. Her husband couldn’t remember putting it there but did so because it looked like a safe place, but Barbara thought he was lying to her… Forgetfulness in dementia is not the ‘normal’ kind…

She finished with a very important phrase: “It’s not what you do; it’s the way that you do it.”

Then Frank described giving up everything to move in and look after his mother. She became convinced that there was a strange lady in the home and it wasn’t until later he realised that she had mistaken her reflection in the mirror as a stranger. No one had helped him; no one had suggested he take the mirrors down. He described carers as the largest dementia workforce in the country – about 500k people and that more needs to be done.

Suzy was a lovely lady of 39 and her mum of 67 has dementia and lived with her husband who had other health problems. Suzy decided that the best thing for her mum and dad was to move them in with her family of four. She actually described how she has learnt so much from her children who have taught her to just be with mum as she is now, not how she was.

The final speaker was Chris. He was very young when diagnosed and, again, there was absolutely no suitable support available. But soon he and his wife realised that it wasn’t death by diagnosis and have been actively promoting and supporting other people with dementia and their families ever since.

The final comment really made me think. Jayne, Chris’s wife and also carer to her mum who lives with dementia and 16 year old daughter, said: “If I go down, we all go down. So by keeping one person well, you’re keeping four people safe and well.”

You do the maths.

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