At Dementia NI, we're proud to be the only member-led dementia organisation in Northern Ireland.
We have more than 80 members who all live with dementia and are at the heart of our work. They play a part in everything we do, whether working to improve the lives of local people with dementia or shaping the future of dementia services and policy. Our members give a voice to thousands of people across Northern Ireland who live with dementia by sharing their experiences, challenging attitudes and pushing for change.
In this monthly Meet Our Member series, we'll give you the chance to learn a little more about our members to give you an insight into who they are and the work they do with us.
Today, we introduce you to Davie McElhinney. 58-year-old Davie, who is from Enniskillen, was diagnosed with Fronto-temporal Dementia in 2017. Davie has been a Dementia NI member for around four years and is also a member of our Board of Trustees.
Why did you originally decide to sign up to be a Dementia NI
After my diagnosis, I felt very lost. After about nine months, I realised I was going to need support so I began reaching out. It was my Community Psychiatric Nurse who recommended I get in touch with Dementia NI. I went to Irvinestown for my first Empowerment meeting and haven’t looked back since!
What was it like going to your first Dementia NI peer support group?
I didn’t know what to expect. This was my first time recognising and dealing with my diagnosis in a public way. I was in a very desperate place after diagnosis so I was apprehensive and nervous. I had begun to feel as if I was the only person that had early onset dementia but the peer support groups showed me that there were other people living well with dementia.
I met John McErlane [one of the founders of Dementia NI - click here to read John's story] who talked to me at length about his own life and journey with dementia. John is an incredible man and an inspiration and talking with him gave me hope for the future. On that day, my life started again.
What is the biggest misconception people have about dementia?
The biggest misconception about dementia is that only granny and grandad can be diagnosed with it. People think it’s an elderly person’s illness but that’s not the case. Most Dementia NI members are early onset and are living well with the help of medication. It’s important to break the misconception that it only affects the elderly. I was diagnosed at 54 and most members were diagnosed in that age group.
What do you enjoy most about being a Dementia NI member?
I enjoy trying to help other people with dementia and working to put a clear message out that life isn’t over after your diagnosis. I intend to live as well as I can for as long as I can. Sometimes, particularly on social media, people will challenge me on that and ask, "How can you live well?" Perhaps their only understanding of dementia is what it can be like in the more advanced stages. I have no hesitation in telling them that I live a good life. I’m not naïve, I know there may not be a happy ending, but in the meantime I intend to live well.
What helps you to maintain your independence?
I go for a swim every morning at 9am – that gets the day going. Then I get on with what needs to be done that day. I’m not singing or dancing every day but I take one day at a time and get on with life. I joined a Men’s Shed which gets me out and about – it’s important to remain social.
I've also got back into scale modelling. The concentration on building things with small parts calms my brain before bed. Two or three hours can slip by so easily! I go to a modelling club every Wednesday and I do social farming on a Thursday – I’m feeding the cattle at the moment. And I call on a neighbour regularly to do puzzles in the paper with a cup of tea. It’s all about keeping the brain active.
Initially I hid away and didn’t want anyone to know about my diagnosis. I was in denial. Accepting your diagnosis and moving forward is so important.
Which new skills have you had the opportunity to learn at Dementia NI?
I enjoyed working on a storytelling and quilting project with the Arts Council. I made a quilt which is something I'd never done before! it was very satisfying and it's something you can keep for evermore. Dementia NI also gave me with the chance to do a photography course. When I started, I had never held a camera in my hands before and by the end I had created a photo book, My Dementia Journey, which I'm really proud of.
I was already used to talking to the public but at Dementia NI I've developed that skill further. I went to a Western Health Board meeting in Altnagelvin Hospital with all the bosses and leads in the Western Health Trust. I think they were surprised that a person with dementia was speaking to them.
What initiatives are you most proud to have been involved in at Dementia NI?
There is so much I'm proud of. I enjoy doing the information stands because they spread the word and it's great to see so many people who are genuinely interested in learning about Dementia NI. Steering people towards the charity is great. I have helped one or two people come to terms with their diagnosis and get involved in Dementia NI which I'm proud of. The support we give to one another as members is something I'm extremely proud of too.
Working with the nurses at Magee Campus at Ulster University to help them rewrite the syllabus to include dementia was very rewarding. And helping to develop the InspireD Reminiscence app to help people with dementia to share photos, music and memories was fantastic.
What's the one change you'd like to see in dementia services/policies?
I'd like to see standardised care and diagnosis across Northern Ireland. At the moment each Trust has a different approach to dementia care. I'd like to see it change so you get the same treatment wherever you are. It shouldn't be 'here's the door and away you go!' after a diagnosis. It was great that Dementia NI members got the opportunity to meet with Health Minister Robin Swann last year and put some of our recommendations for improving services to him. He seemed to genuinely listen so hopefully he will progress things.
What are your experiences of stigma around the condition?
“You don’t look like someone with dementia” is something I hear all the time. My new GP said that to me recently after looking at my notes. I say, "What does dementia look like?" and explain that I live well. There is ignorance even in the medical profession. I'm under care for 'elderly illness' and it offers me very little. I feel very lucky that I am on early onset medication as many other people don’t get that chance. Dementia doesn’t define me and I won’t let it for as long as I can.
What would you say to someone who has just received a diagnosis?
Try to come to terms with it as best you can and join Dementia NI for support. Don’t leave it too long to reach out. I was shell-shocked after my diagnosis and it took me nine months to reach out. Try to get involved in the charity as they are here to support and empower people. I still need support to this day.
Also, try not to be in denial about your diagnosis. Take it a day at the time. My diagnosis was a shock, I was naïve and had no idea it would be dementia - I thought it might be a brain tumour. I would also stress that you’re not alone. It is a lonely place initially but reach out.
What does being a member of Dementia NI mean to you?
Dementia NI are such a good organisation. The support I get from the other members is fantastic. I feel part of a family. It’s like an extended family. I don’t know where I’d be today without Dementia NI.
Thank you to our Member and Trustee Davie for sharing his story.
Interested in starting your journey with us? As a member, you can get involved in Dementia NI's work to make sure that everyone experiencing dementia is treated with respect. There's no pressure to do anything, but if you are keen to take action we'll empower and support you every step of the way. Read more here.