A Co Tyrone man who had to wait four years before being diagnosed with early onset Alzheimer’s has urged the Health Minister to help ease the burden on families in a similar situation.
Graham McElhinney (57), originally from Londonderry but now lives in Omagh, was part of a delegation from Dementia NI that met with Mike Nesbitt last week.
The pastor, who first saw his doctor in 2018 before receiving the diagnosis in 2022, first became concerned after noticing lapses in concentration and early morning brain fog.
“That’s when I first consulted my doctor,” Mr McElhinney said.
“I spent four years apologising to my family for turning into a grumpy old man.
“It was so frustrating for everyone.”
Eventually, in April 2022, a diagnosis of early onset Alzheimer’s came and with it the relief that he could at least try to take measures to manage his life and seek the support he and his family needed.
“I know it’s difficult to think you might be relieved to get that diagnosis,” the clergyman said.
“But after waiting for so long that’s what it was. One big collective sigh of relief.
“It took four years when the UK average target was to get a diagnosis within six weeks. The stress it all put on my wife and our two sons lasted right through that time.”
The pastor of Life Triumphant Church found out via an online video-link consultation with a doctor from Manchester.
“There isn’t the staffing level to manage it here,” Mr McElhinney said.
“In the end, it took 10 minutes. Then we were left to deal with it ourselves.
The team from Dementia NI met with Health Minister Mike Nesbitt to press for earlier interventions in diagnosing dementia
“But at least, after so long, we all had a base to move forward from. We could start to make small adjustments and allowances to manage it.
“My life is as normal as it was before.
“I still have a full life, but a lot of that is down to the support from the people at Dementia NI.”
For four years, Mr McElhinney was unable to access support from charities as he didn’t have a diagnosis.
“I had my family,” he said, “There are others who might not be so lucky.”
There are currently over 22,000 people living with dementia in NI.
That figure is set to double by 2040 but it is estimated only two-thirds of people with disease have been diagnosed.
“We did come away from the meeting in a very positive mood,” Mr McElhinney said.
“I know this illness is going to be progressive. It is for everyone, but we were able to get the message across that the earlier we get the diagnosis the more opportunity there is for the right treatment, support and conversations with our families.”
Campaigners have expressed concern about the absence of dementia in Stormont’s draft Programme for Government published last year.
Allison Batchelor (64) is also a member of Dementia NI.
“There was mention of ‘time critical’ waiting lists being a priority, but it isn’t clear if this includes dementia,” she said.
“We know that nationally the benchmark timeframe from referral to diagnosis should be six weeks. This is nowhere near what we are hearing from people who are waiting for or have just received a diagnosis.
Stephanie Green is Dementia NI Campaigns and Membership Lead.
“Dementia is categorised by the Department of Health as a terminal illness,” she said.
“There will be a focus on cancer and other ‘time critical illnesses’. We are shocked that despite the projection that the number of people with a dementia diagnosis is to double by 2040, there is little mention of dementia.
“Our members feel ‘invisible’ and ‘at the back of the queue’, but they are living proof that you can live well with dementia, but an early diagnosis is the key which unlocks access to appropriate medication and support.
Following the meeting, Mr Nesbitt said: “It is vital that we ensure that those in Northern Ireland who are affected by dementia are afforded opportunities and access to improved care and services.
“A key aim in the draft Programme for Government 2024-2027 is to cut health waiting times. This would include waiting times in relation to dementia assessment and diagnosis,” he added.
“I am aware that much work will be required to make this a reality, including a focus on workforce pressures which continue to impact upon waiting times service users encounter.
“Progress has been made, however, in setting up a Regional Dementia Services Project Board, a key focus of which will be to decrease waiting times for assessment and diagnosis and make improvements in this and other areas.”