‘LEWY Body Dementia Survival and Me’ author elected vice-chair of working group
KANTURK resident Kevin Quaid, who last year published a critically-acclaimed book documenting his struggle with Lewy Body Dementia, has appointed vice-chair of the newly formed Irish Dementia Working Group (IDWG).
Originally from Broadford in Co Limerick, Kevin was diagnosed with Lewy Body Dementia (LBD) 2017 at the age of 53, having previously been diagnosed with Parkinson’s Disease two years earlier.
Following his LBD diagnosis Kevin was unable to find a book written by anyone with the same condition and decided to put pen to paper and document his own highly personal journey with the condition in his book ‘Lewy Body Dementia Survival and Me’.
Earlier this year Kevin wrote about his diagnosis, why he decided to write the book and the “new focus” that joining the IDWG has brought to his life in a moving piece on the www.alzheimer-europe.org website.
Kevin said that from the beginning he chose to be open about his diagnosis and because of this decision his personal journey had become “a communal journey”. “For both Helena my wife the day that I was diagnosed with Lewy Body Dementia was probably one of the darkest days of our lives,” he wrote.
“Speaking publicly about living with dementia has brought me to an international community of understanding. I want to challenge the stigma of dementia and encourage other people to be open. As part of this I self published the book ‘Lewy Body Dementia Survival and me,” he wrote.
Supported by the Alzheimer Society of Ireland, the IDWG is a national advocacy group that aims to “give Voice” to the lived experience of dementia and has more than 25 active members, all of whom have a diagnosis of some form of dementia.
Kevin said that since becoming an advocate and joining the IDWG in early 2018 he has found “a new purpose in my life.”
“I enjoy the work, but what is really wonderful is that you meet other people living with dementia who want to advocate for change. We understand each other so well and there is a special bond. It’s great to meet people who ‘get’ exactly how you feel,” he said.
“We have different diagnoses – I live with Lewy Body Dementia so I do not have issues with short term memory like my colleagues with Alzheimer’s disease. But I have issues with hallucinations, fear and broken sleep. And we all face the challenge of stigma.”
Kevin was elected to the position of IDWG vice-chair at their first national gathering in Dublin recently to mark World Alzheimer Month 2019, which runs through September.
He said it was a “fantastic honour for me and my family,” and that he was looking forward to working with the group’s newly elected chair, international advocate Kathy Ryan, and the new steering committee.
“We want to bring the group forward and to make a difference to how people living with the condition are perceived and treated across Ireland,” said Kevin.
He said there was “no doubt” but that there was still a stigma around dementia.
“That’s why the group is here – to step out of the shadows. People should not feel embarrassed or ashamed about dementia. The way I fight this stigma is by being very open with people in my own community about having dementia. I always tell people. And, when I tell them, I find that they just treat me the same.”
“I would like to say a big thank you to my colleagues and friends for voting me in (as vice-chair) - I won’t let you down,” he vowed.
For more information about the Irish Dementia Working Group visit www.alzheimer.ie.