This week is Dementia Action Week (15-21 May 2023), held annually to encourage people to take action to improve the lives of people with dementia. This year’s theme is ‘diagnosis’, highlighting the importance of receiving a timely and accurate diagnosis of dementia.
Here in Northern Ireland, there are estimated to be more than 20,000 people living with dementia and, of these, only 64.8% have been diagnosed. A diagnosis of dementia is vitally important in enabling access to treatment and support, and research shows that 91% of people living with dementia see clear benefits to getting a diagnosis.
That’s why at Dementia NI, we’re using Dementia Action Week to encourage local people with symptoms of dementia to seek a diagnosis as early as possible, as an early diagnosis can help them to maintain their quality of life and stay independent.
Here, Dementia NI member Martin Murtagh, 71, from North Belfast explains how getting a dementia diagnosis helped him live well and make the most of life.
“I had been noticing changes in myself for a few years before I got my diagnosis. I was forgetting stuff and doing strange things like leaving the oven, lights and taps on and throwing money, phones, and remote controls for the TV out. I knew something was wrong and I didn’t want to kid myself about it, so I went to see my GP.
“My GP was fabulous. We had a yarn about everything that was going on and she sent me to see a consultant quickly. I’m grateful she did because the uncertainty was terrible. The consultant did several memory tests and when I explained that I had been getting lost, they sent me for a brain scan. At the age of 63, I was diagnosed with Alzheimer’s Disease.
“When I first got my diagnosis, I couldn’t believe it. I thought, ‘Dementia? That’s not me’. My mind was buzzing and going a mile a minute. I was convinced it must be a mistake. I felt like my whole world had come to an end. My consultant just told me, ‘You’ll be alright Martin’. I wasn’t given information on any services or told what the next steps would be. I was too scared to tell my son before he drove us home as I was afraid he might crash the car.
“I was in a bad place at that time. I knew what was ahead of me because my sisters had been affected by dementia. It was really affecting my mental health and I ended up having counselling. Things only got better when I began to accept my diagnosis. I realized I needed to face this and I became interested in learning about dementia and how to live well with it.
“I found that accepting the diagnosis has helped me a lot. I have been able to access support at home which has enabled me to stay independent. And my diagnosis allowed me to get on medication, which is really helping me. If I didn’t take it, I know my dementia would be further on. It hasn’t stopped the symptoms but it slows the progress of the dementia down.
“A huge benefit of getting a dementia diagnosis was being able to join local charity Dementia NI. They put me in touch with other people in the early to middle stages of dementia who are in the same boat as me. We work on some fantastic projects to help improve services for local people with dementia. Joining Dementia NI has been life-changing for me. It has given me hope and a will to carry on.
“These days, I am living well with dementia, with the help of Dementia NI and my family, who are a great support. I have good days and bad days but I stay active and keep my mind occupied. I attend my local bowling club and social club, and I do a lot of work with Dementia NI to raise awareness of dementia and reduce the stigma around it. My diagnosis has opened up new opportunities and made me determined to live my life the best way I can.
“This Dementia Action Week, I’d encourage anyone who is experiencing symptoms of dementia to see their GP as early as possible and speak about their concerns. Don’t be afraid to say the word ‘dementia’ to them. You may not have dementia but if you do, getting an early diagnosis may relieve some of your stress and make it easier to access appropriate help. Getting a diagnosis can give you peace of mind. You may not be able to do everything you did before, but you can still do many of the things you enjoy and have a good quality of life.”
Stephanie Green, Development Manager at Dementia NI, says: “This Dementia Action Week, we want people to understand that the life you live and love doesn’t end when you receive a dementia diagnosis.
“We know that dementia is one of the most misunderstood conditions and a diagnosis can have a life-changing impact on people and their families – but getting a timely and accurate diagnosis will enable you to live as well as possible. Many of our members who waited to get a diagnosis for years wish they’d received it sooner.
“A diagnosis means you can access the best support and treatment which can make a huge difference. A diagnosis also gives you information and the ability to plan while you still have the capacity to make key decisions.
“Many people are struggling to get a quick and accurate diagnosis and experiences vary greatly. If the dementia care pathway from diagnosis to end of life was standardised it would help address this.
“We want everyone to know that Dementia NI is here for anyone with a dementia diagnosis who is in the early to mid stages of the condition and there are many ways we can help you. This includes our peer support groups and our In The Same Boat service, which sees Dementia NI members provide one-to-one support to those who are newly diagnosed.”