An Armagh community worker has called on Assembly election candidates to make dementia care and treatment a top priority for their parties.
Rachel Toner lost her great aunt to Alzheimer’s disease with her passing a few years after she received a late diagnosis.
Due to waiting lists and the length of time that it can take to receive a diagnosis, up to two years in some cases, it is believed there are over 7,300 people not aware that they are living with the condition.
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Rachel's family her great aunt's condition had been diagnosed sooner, she would have been able to access more support and give her a better quality of life in her final years.
Speaking to Belfast Live, Rachel said that more needs to be done to improve the quality of care that Alzheimer’s and dementia patients are receiving in Northern Ireland.
She said: "It is awful to think that there are peopl waiting for nine weeks or more before they are able to see a doctor in order to get a diagnosis for Alzheimer’s or dementia. A diagnosis can take up to two years and this greatly impacts the quality of someone's life when they could be on treatments that would improve this.
"There is also a feeling that once someone receives a diagnosis that they are left on their own to deal with it and families are relied on in order to come up with plan on how to care and treat them.
"A dementia diagnosis can be a very isolating time for the patient and their families as well and the more support that is available to them from the beginning the better. This has been made even worse during Covid with families losing the ability to see their loved ones and befriending services being stopped.
"Patients should have a comprehensive treatment plan, catered specifically for them to their needs, from the moment they are diagnosed to when they pass. This would greatly improve the quality of life for them and their families because if treated correctly patients can still live very full lives."
Rachel believes that all MLAs should have training in understanding Alzheimer’s and dementia so they are able to understand the experiences of those with the condition and how their care can be improved for the better.
She said: "All Assembly candidates and future MLAs should have dementia treatment and awareness as a top priority of theirs and I believe they should all receive some form of training to understand the condition.
"It is not something that occurs naturally with old age and there are people in their 20s who can be diagnosed with it and it is important that everyone is aware of the symptoms and how to help and interact with someone who has dementia.
"There are also many different kinds of dementia with each being different from the other in how the person will respond to the condition and what their symptoms will be.
"We have an ageing population in Northern Ireland and it is likely that we will see even larger numbers with Alzheimer’s or dementia in the future so it is vital that we have a strategy in place to ensure that people are looked after and cared for in the best possible way."
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.
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.”
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.
“Alzheimer’s Society is hosting two virtual ‘lunch and learn’ events on Monday 25 April and Tuesday 26 April for all Assembly election candidates and their staff to hear about dementia and what they can do to make our society more dementia friendly and deliver real change for those living with the condition and their loved ones.”
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 or click here email your MLA candidates (alzheimers.org.uk)
To register your interest in the lunch and learn event please email martin.reilly@alzheimers.org.uk
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