Stories from people living with a dementia
Evelyn and Danny describe their personal experiences in being diagnosed and living with a dementia. Frances, Glenn and Seamus also tell their stories in adjusting to a life-changing diagnosis with dementia. With support from family and friends, they have fulfilling lives.
Evelyn talks about living with a dementia and how she continues to enjoy life.
Danny talks about being diagnosed with a dementia and how he continues to enjoy life.
Danny lives in Antrim, where his sister, son, daughter and granddaughter also live.
Getting an explanation for changes
“My health wasn’t good and I suffered from high blood pressure.”
Danny had little knowledge of dementia before his diagnosis. He hadn’t considered dementia could be the reason for the symptoms he was experiencing. But like many people with a dementia diagnosis, Danny was glad he had an explanation for the changes he was experiencing, rather than worrying about what else it might be.
Meeting a dementia support worker
Danny’s son contacted the Alzheimer’s Society and arranged for his father to meet Valerie, the local dementia support worker.
“Valerie visited me at home, outlined the support available and referred me to some local dementia groups. The company, support and my new found passion for gardening has been great! I’ve never looked back, the rest is history!”
Asking for support
Like many people with a dementia diagnosis, Danny urges anyone concerned to seek support.
"Join the local group and look forward to enjoying your life. You may not realise it, but there’s a lot of support outside your home. I want to help anyone who may receive a diagnosis like I did and I will do what I can to make a difference.”
“If you are worried, speak to your doctor. They will guide you on the right path to a diagnosis.”
I’m 'still me'
“There are many people with dementia you may meet every day. Treat us the same as you always have, allow us a moment or two, look at us when you speak, don’t feel sorry for us. Allow us the time and patience to continue to be part of the family. All in all, just continue as usual as we are still the same people.
“I’m still me’,” concluded Danny.
Martin lives in Belfast. He has four sons and seven grandchildren who live nearby. He enjoys snooker, watching football and is an avid Manchester United fan.
Before a diagnosis
Before he was diagnosed, Martin noticed he was putting money and remote controls in the rubbish bin. He knew this was unusual. Having had a family member with dementia he recognised the signs and symptoms. Martin went to his GP for help.
Getting a diagnosis
Martin thought he may have dementia, but getting a diagnosis wasn’t easy for him at first.
“It took a while to sink in. I wasn’t scared because I was in denial at the start. I was convinced it must be a mistake. But I read up on dementia and came to terms with it”
Accepting a diagnosis
“While it was difficult to accept, speaking out about my concerns and seeking a diagnosis was definitely a good move.”
“I found that accepting the diagnosis has helped me more. I was able to get suitable help through my GP. People then started coming to me and living independently was a lot easier.”
“I get a lot of support from my family and friends at Age NI and Dementia NI who are all are brilliant. They know exactly what it’s like for me. My medical services are also fantastic and very supportive.”
Getting peace of mind
“I want to share my experience and story to help others get the right help and information. I would encourage anyone who is experiencing symptoms of dementia to seek help, so they don’t have to go through a difficult diagnosis and journey. Often the longer you ignore the signs, the harder it can be to accept. Seek help as soon as you can. The sooner you get help, the easier it is. If you get a diagnosis, it gives you peace of mind.”
Having patience when someone has dementia
“I wish people were more patient. Because you can’t see dementia, people think there’s nothing wrong with me. Sometimes I can’t get the words out. So I tell people I have dementia and ask for help. More often than not, people are understanding and willing to help. I might have dementia but I’m still a human being.”
Frances is from Ballymena and is happily married, with four children and ten grandchildren.
Frances enjoys doing puzzles, supporting various charities and is a member of the Inner Wheel. Every evening she cooks dinner with her husband.
Awareness of dementia
Frances said: “I was very aware of dementia before my diagnosis as my mother and grandmother had dementia.”
Getting diagnosed with frontal lobe dementia
“My daughter noticed a few changes in my behaviour. After I had an operation, my symptoms became more noticeable. I was referred to the memory clinic for tests which included a CT and MRI scan. Soon after, I was diagnosed with frontal lobe dementia.
“I was anxious when I first received my diagnosis. I took a course of medication and I started to improve.”
Life after diagnosis
Frances still enjoys driving. She said: “I don’t dwell on my diagnosis too much. I get on with life, there is certainly more to life than moping around! I love getting out and about. I have to take an annual test to make sure that I can drive safely on the roads. But it’s worth it as this allows me the independence to visit family, go shopping and socialise.”
Leading an active life
“I want to show other people that there is life after a dementia diagnosis. I am living proof of that! I want people to know that leading an active life is much better than staying still. If you’re sitting around all day doing nothing, all you can do is ponder your diagnosis.”
Getting the right help and support
“If you think you may have dementia, go and find out about it, get the right help and support so you can carry on with your life. I know my opinion still counts and is still used in helping others with the groups I’m involved in such as Inner Wheel and Dementia NI.”
If you know someone with dementia, treat them the way you always did. If you do, the lives of people with dementia would be so much easier. “
Glenn is from Bangor. He is a proud husband, father, grandfather and owner of Billy, the dog. Glenn didn’t know much about dementia before his diagnosis. He wasn’t aware there are different types of dementia that can affect people in different ways.
Diagnosed with vascular dementia
Glenn said: “I had some heart-related health problems. Following surgery, I told my doctor I felt I was becoming forgetful. The GP referred me to a consultant who did some tests. I was diagnosed with vascular dementia.”
Adapting to a diagnosis
“I was shocked, even a bit dazed when I was diagnosed. I’ve accepted my diagnosis and have realised that it was a good thing for me. It alleviated all the worry I had before when I noticed symptoms. But it has been hard adapting. I can no longer drive or work like I did before, but this allows me to spend more time with my family. Now I help with the housework, tend the garden, walk the dog and enjoy music gigs.”
Helpful and supportive friends
“I have a great group of friends who are helpful, understanding and supportive. I remind them constantly how much I appreciate them being so caring to me.” Glenn wants to raise awareness about dementia: “I want to give people an insight into life with dementia, how to be more tolerant of the symptoms and help people like me stay independent.”
Being honest about symptoms
“Go to your GP as soon as possible and be honest. Don’t be in denial; it will make things worse for your future and the future of the people you love.”
“I am very fortunate to have a loving family. I am very grateful for their support since my diagnosis. They have more responsibilities now because of my dementia and often have to help me out, but it’s important to know that you don’t have to do it alone.”
Respecting and accepting people with dementia
“I decided to tell people about my dementia because I want to help stop the stigma associated with dementia. I hope people will give me the same respect and understanding as they would to anyone else. I want people to be more aware of dementia and accept people like me. I may need a little more time. It won’t cost you anything. Remember, respect is free.”
Seamus lives in Derry with his wife Anna. He has five children and 12 grandchildren. Like most people before they get a diagnosis, Seamus was unaware of dementia. But he knew something wasn’t quite right.
Diagnosed with posterior cortical atrophy
Seamus said: “About four years ago, I had an idea that all wasn’t well with my memory. I had different tests and scans. Two weeks after a memory test, I was diagnosed with posterior cortical atrophy. This is a rare type of Alzheimer’s disease. I was given a course of medication.”
Understanding different types of dementia
“I was relieved to get an answer to the symptoms I had been experiencing for some time. I was very curious to find out more about different types of dementia and different symptoms. Recently I learned that the number of people with dementia is increasing in Northern Ireland. I think a lot of people with symptoms are in denial. I would like to make sure that those living with dementia will be cared for like any other person with an illness.”
Continuing to have a normal life
“Since my diagnosis, I’m continuing to live my life as fully as possible. I still go to football matches. At Christmas, I put up the decorations.”
Talking to family and friends about diagnosis
“I would encourage people to live as normal a life as you can, get out and about as much as possible. There are lots of dementia support groups, such as Dementia NI. Don’t hide your diagnosis, talk to your family and friends about it.”
Diagnosed with dementia in 2011, retired fisherman John is from Toomebridge. John enjoys travelling and experiencing different cultures.
Symptoms of dementia
John first learned about dementia when he received his diagnosis. “Before receiving my dementia diagnosis I suffered from depression, mood swings, memory loss and low self-esteem. I wasn’t aware that these were symptoms of dementia and I didn’t understand the changes I was experiencing.
“But I visited my GP and when I received my diagnosis I felt relieved. I realised life was for living and it was time to make the best of my future with a little support.”
Raising awareness about dementia
Since John’s diagnosis, he has developed Dementia NI with the help of others. John said: “I wanted to do something constructive to help people in the same position as myself and eventually established Dementia NI. This organisation works to raise awareness and battle the stigma of dementia. I love seeing others getting much needed support from peers and building their confidence again.
Life after a diagnosis
“If I could give advice to anyone experiencing symptoms of dementia, it would be to take the steps in order to get a diagnosis, it is best to know. You will have peace of mind. You can be involved in decisions about your care and plan for the future. Most importantly, there is life after a diagnosis, just take it one day at a time.
“If you know someone with dementia or think they may have dementia, don’t assume that you understand what is happening to them. Ask how you can help and don’t assume.”
Ronnie is from Belfast. He lives independently with dementia.
Ronnie explains: “After a number of falls and hospital visits, I was diagnosed with dementia in 2013. Following my diagnosis, I was relieved to know what had been causing me to be unwell. I was determined to live life the best I could.
“Living in dementia-friendly accommodation means there are staff nearby to offer help if I need it and visitors I can talk to. But I still manage to maintain my independence. I’m also involved in a local dementia empowerment group which offers support, friends and craic. Although with all the women. it can be hard to get a word in edgeways sometimes!
“I believe it is important to tell people what it is like to live with dementia and to show them I still have an opinion. I need people to know how I feel and where they stand with me. I’m well able to look after myself, I can shower, shave and certainly let you know what I need and what I don’t.
Getting help and treatment early
“The public need to know more about dementia. They need to keep an eye out for their relations and friends who may be showing signs of dementia, they may get lost, forget to pay a bill, forget what you said, get their words the wrong way around, get mixed up or struggle to find the right words. Keep an eye on your family and friends so they can get help and treatment early to give them a good lifestyle for as long as possible.
Getting help and support
“If you think you may have dementia, go to your GP. You can get help and proper support if you do. You’re not alone. There are many people with dementia who can help you, share their stories, experiences and most importantly be a friend. Remember, your family and friends don’t have to take over, just give a little help when you need it. By talking to them, you can make sure they know what it is you want.”
Dementia help and support
If you or a family member are concerned about dementia, you can get help and support. To read about help and support, go to:
More useful links
- Supporting someone with dementia
- Dementia services - Belfast Health and Social Care Trust
- Dementia services - Northern Health and Social Care Trust
- Dementia services - South Eastern Health and Social Care Trust
- Memory/ dementia services - Southern Health and Social Care Trust
- Dementia Services - Western Health and Social Care Trust