A Fermanagh man living with dementia is one of a number of people who have held a meeting with Health Minister Robin Swann on dementia services.

Davie McElhinney from Lisbellaw joined fellow members of the Dementia NI’s Empower and Support Group on a virtual call with the Health Minister where they highlighted the need for improved early onset dementia services, and for consistency of services across Trust areas in Northern Ireland.

‘Genuine interest’

Speaking on his meeting with the Health Minister, Davie said: “I asked for a standardisation of services, and could he provide us with a template about how dementia services are operated in each area and asked what could be done to reduce waiting times for dementia diagnosis.

“He took a genuine interest in us and seemed very open to what we asked and what we told him.

“It was really important for us to have that meeting and to have our voices heard.”

Dementia NI members also highlighted the importance of tackling long waiting lists for assessments and review appointments and funding for dementia research. They emphasised too that people living with dementia should be at the heart of any decision making about these vital services.

Davie (58) spoke to The Impartial Reporter about his journey to this point after being diagnosed with Fronto-temporal dementia when he was just 54 and was working as a chef.

He is now a member of Dementia NI having joined the Empowerment Group in Irvinestown, as part of this he helps delivers awareness sessions to schools, care groups and community groups.

‘Reassured’

Speaking about joining Dementia NI, Davie said: “As soon as I went through the door, I felt very welcomed and reassured.

“After the initial diagnosis I had thought I only had weeks to live and I became very depressed at that time, I met one of the founding members who then explained his own journey and that really gave me good hope.”

Davie added: “My life started over after the diagnosis, I got involved with Dementia NI and now I sit on the board.”

Davie spoke to this newspaper about his diagnosis and said: “I was in denial, I didn’t want to go to the GP, I thought if it was anything it was probably a brain tumour forming, I never dreamt of a dementia diagnosis.

‘Disbelief’

“Nothing can prepare you for that day, it was just disbelief and anger, numbness and I was very emotional. I was diagnosed on a Friday and spent the weekend in shock and tried to come to terms. I told my two children, and it was very difficult.”

“I didn’t want anyone to know, because in a rural setting you don’t want people to know your business, but you end up living a lie.”

Davie emphasised the importance of talking about a diagnosis. He said: “There is nothing to be feared, not telling people was like living a lie, once it was out in the open it was like taking a heavy coat off.”

Misconceptions

There are many misconceptions about dementia, Davie stressed that he’d like to the public to research the syndrome. He said: “I would like people to find out about dementia, look up the Dementia NI website and there are different types of dementia, there are about 200 different variations of dementia.

Davie suggested that people research the Dementia Diaries for personal accounts from those living with dementia.

Davie encouraged people to treat the public with compassion. He said: “If you see somebody struggling with something like change for example maybe that’s for a reason.”

JAM card

Dementia NI are helping those who live with Dementia by developing a JAM card.

The JAM Card, which stands for Just A Minute, was originally developed by NOW Group which supports people with learning difficulties and autism.

Dementia NI has replicated the card for everyone living with dementia and memory problems as a discreet way of telling people that sometimes they need a little extra time and patience.

Spoke candidly

Davie spoke candidly about how living with dementia affects his day-to-day life. He said:“I am still able to drive which is a good thing.

“I tire quite easily and I do forget things obviously and I’m constantly searching for things that I have lost, and I have terrible trouble with loose change and with money.

“I am very lucky that in shops staff know me. The new [plastic coated] money throws me as I find it hard to differentiate between the tens and the twenties.”

“When you wake you know what sort of a day you’re going to have, sometimes you wake up and it is just a fog and cloudy in the brain, sometimes its lunch time before I’m really getting going properly. I always push forward. I won’t give into it; I won’t sit down and give into it.

“I keep active, I keep my brain active and I challenge myself. Sometimes I do things a bit slower, but things are done all the same.”