AN Armagh community worker who lost her beloved great aunt to Alzheimer’s disease is calling on Assembly election candidates to make dementia a top priority.
Rachel Toner’s great aunt died just few years after receiving a late dementia diagnosis. Her family believe her final years would have been made easier if they knew about the condition sooner, leading to Rachel now supporting calls for action to be taken so other families can get a timely diagnosis.
In 2018 plans were set out for the Regional Dementia Care Pathway across Northern Ireland which would deliver high-quality, person-centered services from the point of initial engagement until end-of-life care, but it has not yet been fully funded or implemented.
Alzheimer’s Society is campaigning for Assembly election candidates to pursue the full roll out of the Pathway, so that other families aren’t left in the dark, unable to unlock vital care and support.
Rachel said: “My great aunt was one of the smartest people I have ever met. She was a writer and a teacher. I never thought she would get dementia, but I now know that it doesn’t matter how smart you are or how active your mind is it can happen to anyone.”
Over the years Rachel’s family grew increasingly concerned that her great aunt’s personality had changed and she was acting out of character.
“We were very worried because we just didn’t know what was wrong,” she said. “We were wondering if it could have been the list of all the other things you would think of before dementia.
“I remember being at a family wedding when I was 10 and she seemed quite agitated and when I look back now, I wonder was that the early signs of it?
“By the time she was diagnosed it was nearly too late. For so long we didn’t know what was wrong and why she was so different. It would have made it easier if we had known.”
During the pandemic the number of people waiting nine weeks or more for their first dementia diagnosis appointment more than tripled. Alzheimer’s Society in Northern Ireland say the full implementation of Regional Dementia Care Pathway would significantly contribute to addressing delays in diagnosis.
Bernadine McCrory, Alzheimer’s Society’s Northern Ireland Country Director said: “There are more than 22,000 people in Northern Ireland living with dementia, yet one third of those are yet to have a diagnosis.
“As Rachel’s story shows, a dementia diagnosis has a whole family impact.”
Rachel’s great aunt passed away in 2010 aged 70.
She feels passionately that diagnosis rates must be an issue for election candidates.
Rachel said: “There needs be a focus on this because so many people and their families are suffering.
“A diagnosis can bring a sense of relief as well as support, both for the person with dementia and their carers who can also be very isolated.
“It’s awful to think that 7,333 people in Northern Ireland are living without a dementia diagnosis, that’s such a large number for such a small place.”
Alzheimer’s Society is encouraging supporters to email their NI Assembly election candidates and urge them to take action for those living with dementia.
Bernadine added: “We are asking supporters to campaign with us for the full implementation of the Regional Care Dementia Pathway and pushing for dementia to be made a priority in the ongoing reform of adult social care."
To contact your Assembly candidates and ask them to take action, visit alzheiemers.org.uk and click on ‘get involved’, where you see the option to campaign with Alzheimer’s Society in Northern Ireland.