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Kevin Quaid shares his experience of diagnosis and his shift in perspective since joining the Irish Dementia Working Group

Wednesday 13 February 2019

I was diagnosed with Lewy Body Dementia in 2017, aged 53. From the beginning I chose to be open about my diagnosis. Because of this decision my personal story has gradually become a communal journey; speaking publicly about living with dementia has brought me an international community of understanding.

I want to challenge the stigma of dementia and encourage other people to be open. As part of this work I self-published a book – “Lewy Body Dementia Survival and Me”.

To my delight and surprise I am overwhelmed by the worldwide response from people who have read it and said that it was such a help to them. After diagnosis I would never have thought I would be an author. But this achievement has given me savage hope.

I joined the Irish Dementia Working Group, supported by The Alzheimer Society of Ireland, in early 2018. 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.

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.

The main focus of our most recent meeting was Taking Journeys and Travelling with Dementia, and each and every member had wonderfully practical ideas. I was reminded again of the value of asking the experts – people living with dementia!

I always loved to travel and we lived in Australia for five years. We have just returned from a three-month holiday there, with some of our family who live there and it was a fantastic holiday.

The trip gave me a new fight and a new strength to make sure that I am back there again next year when my daughter is getting married. Twelve months ago I was very very ill and it seemed just like a pipe dream, that I would be in Australia to give my daughter away on her wedding day, it has now become a reality.

For both Helena my wife and myself the day that I was diagnosed with Lewy Body Dementia was probably one of the darkest days of our lives.  But since becoming an advocate and joining the Irish Dementia Working Group I have a new focus and a new purpose in my life.  There are still dark days but there are also many days when I feel I have a wonderful life despite my diagnosis. I try to live my life to the fullest each and every day and at the moment it is working!

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