Engagement with the Liverpool Dementia & Ageing Research Forum
ARC NWC Public Adviser Jaqui Cannon has written a blog about her work with the The Lewy Body Society, her experience as a carer and her engagement with the Liverpool Dementia and Aging Research Forum for Dementia Action Month.
I have been involved with the Liverpool Dementia & Ageing Research Forum since its formation in September 2019. I am a former carer for my father who lived with Lewy body dementia, I am involved with The Lewy Body Society and I am a NIHR Public Adviser.
I have been involved with The Lewy Body Society for 16 years, 8 years as a volunteer whilst continuing to work as a Senior IT Business Analyst and the last 8 years on a full-time basis.
At the time of my Father’s diagnosis, I had never heard of Lewy body dementia, very soon I needed to become an expert by experience. When people talk about dementia, they automatically assume memory. We soon discovered that it was more than that, it was about the cognitive behaviours including delusions and lack of Rapid eye movement sleep.
The Lewy Body Society has been going for 17 years as of the 6th June 2006 and is the only UK based charity that focuses solely on Lewy Body Dementia. The charity funds research into the disease, raises awareness, provides information and support. The Lewy Body Society is proud to be a member of the AMRC (Association of Medical Research Charities) and to be funding an Admiral Nurse via Dementia UK specifically for Lewy body dementia.
I wanted to become an ARC public Adviser to share my experiences as a former carer for my father, my mother who did not live with dementia but who had multiple comorbidities and to use my skills as an analyst.
Through my engagement with the Liverpool Dementia & Ageing Research Forum on a personal level I have learned how to code interviews which is fantastic, and I am now using this skill on another NIHR project Public Health Intervention Responsive Studies Teams (PHIRST).
The forum allows me to talk about my experiences and to be a voice for those people living with a Lewy body dementia diagnosis and their carers.
I would highly recommend to everyone to be involved in one of the many activities offered by Liverpool Dementia & Ageing Research Forum.
I have contributed to the publications below:
Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study: Aging & Mental Health: Vol 25, No 7 (tandfonline.com)
International Journal of Geriatric Psychiatry | Wiley Online Library
