This is a cross-post with the National Institute for Health Research
Susie Hewer from East Sussex was a full-time carer for her mother, Peggy, who lived with vascular dementia for many years. Since her mother’s death in 2005, Susie has been an Alzheimer’s Research UK Champion, speaking out about dementia and the need for research. Known as the ‘Extreme knitting Redhead’ she has run 41 marathons to date and raised over £35,000 for vital research projects. She draws attention to her cause by various fundraising activities; in 2014 she crocheted whilst running to beat her own Guinness World Record for the longest crochet chain whilst running a marathon at the London marathon. I’ve spoken to Susie about her work championing ‘Join dementia research’.
Susie has been involved in ‘Join dementia research’ from the very beginning, helping to develop the service and making sure it meets the needs of people who want to take part in research studies. She says “when my Mum died I was absolutely stunned that there was no way of linking people with dementia with researchers, and so it became one of my issues”. She attended a ministerial debate on dementia research in 2010, fast forward a few years and through Alzheimer’s Research UK got involved in ‘Join dementia research’.
She says “I like the word ‘Join’, because it’s inclusive and it encourages you to actually make a difference. When you’re dealing with dementia you can feel very isolated, which I know only too well from being a carer, and the idea of joining something makes you feel less alone, and it also gives you hope that you’re actually making a difference.”
Susie points out that people with dementia might think joining was all too much bother, so suggests “if somebody with dementia feels it’s all a little bit too much, ask their carer to get involved too, because it then takes the pressure away from them.”
She also highlights the role of GPs and notes “I think it should start at the doctor’s surgery when there’s a referral to a specialist. That’s where we need to catch people, so it demystifies everything about it”.
Susie is in the PROTECT study, that is currently recruiting on ‘Join dementia research’ service.
This study aims to improve understanding of the way our brains age, and why some people develop dementia, in order to develop better ways of treating and preventing it.
You can follow Susie on her Extreme Knitting Redhead blog.