Dementia Support Line
Share your diagnosis story
We want to show decision-makers across the UK the realities of seeking a dementia diagnosis.
Share yours or a loved one's diagnosis story today and we'll add it to our story wall.
Let's make dementia a priority.
I looked after my lovely husband for four years with vascular dementia.it was the hardest thing I've ever done,I became a prisoner in my own home,he couldn't be left be...
My wife i suppose was diagnosed very quickly as the pandemic started 4 years ago, after the tests questions and scans it was all phone calls, what sticks in my memory w...
I was devastated when I was told my husband had vascular Alziemers I cared for him for 8 years it was very hard work I had visits from the memory clinic which did help...
My grandmother , my mother ( her daughter ) and my uncle ( mum's brother) all got dementia, my mum had vascular dementia, by age 62 she was in a care home where she re...
My mum suffered a stroke in 2020 b...
Here’s a simple tip. If you are caring for someone with dementia who wears glasses, makes sure they have regular eye tests to keep their eye prescription up to date bec...
We found it almost impossible to g...
We have been waiting 6 and 1/2 months for the initial referral to the memory clinic in York and I have seen a decline in my husband’s mental capacity in this time. If w...
A very dear and long-term friend of mine died of Alzheimer’s, unfortunately her two sons have the gene, her father died of it and her mother had another form of dementi...
When my dad sadly had vascular dementia it was so stressful. He had “carers” go in which he resented. My sister & I & a friend popped in 4 times a day spending time wit...
My Mum struggled to get a diagnosi...
My mum was diagnosed with early on...
I looked after my lovely husband for four years with vascular dementia.it was the hardest thing I've ever done,I became a prisoner in my own home,he couldn't be left because he would wander off.,us who look after our loved ones are the forgotten carers.we care 24/7. And ask for nothing,
The laws need changing its a terrible cruel disease which is still taboo.my husband would have seizures and would have to be admitted to hospital but they're aren't enough trained nurses and also no time to care for the dementia patient,my husband was sedated all the time to keep him quiet,how cruel is that.
We need change.
The laws need changing its a terrible cruel disease which is still taboo.my husband would have seizures and would have to be admitted to hospital but they're aren't enough trained nurses and also no time to care for the dementia patient,my husband was sedated all the time to keep him quiet,how cruel is that.
We need change.
Christine
My wife i suppose was diagnosed very quickly as the pandemic started 4 years ago, after the tests questions and scans it was all phone calls, what sticks in my memory was the words and you know it will not get any better , not much help after that ,having to find out what was available and with the help of Age UK and Alzheimers society which were very good at pointing me in the right direction. Unfortunately my wife is now in a care home for the last 14 months as i could not cope , i visit regular and she still knows me but the guilt i feel most of the time hurts me at least i know she is settled and really well looked after.
William
I was devastated when I was told my husband had vascular Alziemers I cared for him for 8 years it was very hard work I had visits from the memory clinic which did help I had 2 strokes while caring for him life was difficult but I loved him so much, in the end I had to put him in a home and felt so guilty I felt I had given up on him I go 5 days and be with him I dont no if he knows me he does not talk I dont think enough is done to help carers looking after there loved ones it effects all the family we have been married for 57 years my husband is still a live but this terrible illness as taken him away from me
My grandmother , my mother ( her daughter ) and my uncle ( mum's brother) all got dementia, my mum had vascular dementia, by age 62 she was in a care home where she remained for 7 years before passing, we had a struggle to get her in a care home because she was young but we couldn't get 24/7 care at home and she was a danger to herself. Myself and my siblings are terrified of getting this disease which one or all of us will probably get through hereditary genes no doubt , every time I go upstairs and think what have I come up here for I shudder , thinking is it starting ? I would love to be checked out regularly so I can find out early if I've actually got it so I can plan properly, but unfortunately if I get it I will probably be along way into it before I find out. Change is needed for this devastating condition that affects so many people, early diagnosis would be a god send.
Cara
My mum suffered a stroke in 2020 but had been suffering memory problems before that. The challenge was always getting her to see a doctor. To a large extent the stroke changed all that but it was still a year or so after she received her diagnosis of mixed alzeimers. My dad tried his best to care for her until his death last year. From a family perspective, the different agencies providing support was so fragmented . On occasion it was so hard to know where to turn. Mum is 79 now and in a specialist care home. I still see flashes of my lovely mum but she has all but gone now...she doesn't even recall my dad and they had been together since the 50s. We need more support and a full government review in how care is provided.
Here’s a simple tip. If you are caring for someone with dementia who wears glasses, makes sure they have regular eye tests to keep their eye prescription up to date because as the dementia progresses there will come a day when they won’t be capable of doing an eye test, and you will have to depend on there last prescription. And prescriptions only last two years. After that - no new glasses. And the chances are they will need them, as glasses get broken and lost where dementia is involved.
Marian
We found it almost impossible to get a diagnosis for our beloved father during the COVID lockdown. My parents were both 92 years at the time and my mum was doing a fantastic job of caring for him but as the changes began to be profound, I brought them to live with us during first lockdown. We handled everything as there were no services apart from my own GP on the end of the phone. I had done an online Dignity in Dementia course and it saved us. Dad died November 5 2021.
Elizabeth
We have been waiting 6 and 1/2 months for the initial referral to the memory clinic in York and I have seen a decline in my husband’s mental capacity in this time. If we had an early diagnosis there might be some intervention available to slow things down. Living with the not knowing what type of dementia he has is very hard .
Lesley
A very dear and long-term friend of mine died of Alzheimer’s, unfortunately her two sons have the gene, her father died of it and her mother had another form of dementia. Also my daughter-in-laws father is badly suffering from it too. He has a very unusual strain which only a few percent of people suffer from. He is such a lovely man but he’s not that person that he was at all, it’s heartbreaking. Such a cruel disease.
Jennifer
When my dad sadly had vascular dementia it was so stressful. He had “carers” go in which he resented. My sister & I & a friend popped in 4 times a day spending time with him but were constantly reprimanded as he hadn’t “seen anyone for days” He couldn’t manage his own tablets, couldn’t keep himself clean and point blank refused to let anyone else help with personal hygiene. He got “stuck” holding onto a mantle piece as he couldn’t remember how to move his legs. Possibly standing for some hours between our visits. Very very stressful & sad.
Viv
My Mum struggled to get a diagnosis for years, hiding her symptoms and going back and forth to the doctors alone and scared in her fifties, as she was losing her mind and sense of self. The doctors had put her problems down to depression/ anxiety and the menopause for years.
We finally got involved with getting her a diagnosis when she could no longer effectively hide her symptoms- she was still only 57 at this point!!! It still took us a further 18 MONTHS to get her a diagnosis - what was galling was that she’d had a brain scan, where the subtleties of her brain shrinkage had been missed when they were looking for brain tumours. She was finally diagnosed at age 58, her sad decline was brutal and she died at age just 63.
The stress and uncertainty was unbelievable and the fear that my poor Mum suffered for years due to the services not lining up were completely unacceptable.
Had she received a more timely diagnosis it would have alleviated much distress for her and who knows, she may not have declined so rapidly.
Getting a diagnosis was key to her and her 3 children understanding what was wrong with her and how to support her. It was key to all of the self confidence she’d lost at work and maintaining friendships with people who just thought she couldn’t be bothered, or was overly sensitive.
It was key to us getting answers and getting the benefits that she was entitled to - frightening to wonder how she would manage to live in her own home, independently, for as long as possible.
I would like to see a much more joined up approach to dementia diagnosis- it’s imperative for those scared and needing to access benefits and support. I would like the route to diagnosis for those under the age of 65 to be much easier, many of whom are still in work with dependents and financial commitments. It’s completely UNACCEPTABLE for people to be waiting years to receive such devastating diagnosis that can unlock so much support.
We finally got involved with getting her a diagnosis when she could no longer effectively hide her symptoms- she was still only 57 at this point!!! It still took us a further 18 MONTHS to get her a diagnosis - what was galling was that she’d had a brain scan, where the subtleties of her brain shrinkage had been missed when they were looking for brain tumours. She was finally diagnosed at age 58, her sad decline was brutal and she died at age just 63.
The stress and uncertainty was unbelievable and the fear that my poor Mum suffered for years due to the services not lining up were completely unacceptable.
Had she received a more timely diagnosis it would have alleviated much distress for her and who knows, she may not have declined so rapidly.
Getting a diagnosis was key to her and her 3 children understanding what was wrong with her and how to support her. It was key to all of the self confidence she’d lost at work and maintaining friendships with people who just thought she couldn’t be bothered, or was overly sensitive.
It was key to us getting answers and getting the benefits that she was entitled to - frightening to wonder how she would manage to live in her own home, independently, for as long as possible.
I would like to see a much more joined up approach to dementia diagnosis- it’s imperative for those scared and needing to access benefits and support. I would like the route to diagnosis for those under the age of 65 to be much easier, many of whom are still in work with dependents and financial commitments. It’s completely UNACCEPTABLE for people to be waiting years to receive such devastating diagnosis that can unlock so much support.
Rosie
My mum was diagnosed with early onset Alzheimer’s at 62, when I was 20. Within 2 years it had completely destroyed our lives and taken her. It completely changed her as a person and was beyond heartbreaking to watch. More needs to be done to assist people living with dementia and their families as trying to care for my mum at the age of 21/21/22 was simply too hard for both of us. Early diagnosis is vital to keeping with dementia living as normal a life as possible for as long as possible. I have done multiple memory walks, half marathon and a sky dive to raise money for Alzheimer’s society and will continue to do so until some form of cure is found
Claire
Share your diagnosis story
Share your diagnosis experiences with us, so we can show decision makers the realities and issues people are facing.