Dementia Support Line
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If you're ready to tell your story, we want your voice to be heard.
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
It will take society to beat dementia. We’ll take your stories to those who need to hear them most, to help make dementia the political priority it deserves to be.
We found it almost impossible to get a diagnosis for...
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....
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...
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...
My Mum struggled to get a diagnosis for years, hiding...
My mum was diagnosed with early onset Alzheimer’s...
My lovely late mum was diagnosed with vascular...
My mother had dementia, and it was very sad to see her change , and forget her children's names at times,
Hello, my name is Julie and I was diagnosed with Alzheimer’s disease last year. I am currently in the Mild Cognitive stage.
It was my wife, Jane, who noticed...
My beautiful mum was diagnosed with dementia...
I am trying to find out what stage of my dementia is at. An what to expect 🤔 to be honest I think I have got the beginning of my dementia but I'm just forgetting...
My lovely, clever husband was diagnosed with...
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
My lovely late mum was diagnosed with vascular dementia&it was the worst day of my life&would not wish it on anybody,thankfuly my mum was treat realy well&lived with this for5years before i very sadly lost her,lives with me everyday of what changes that cruel disease causes&the person&family need as much help&care as possible.
Susan
My mother had dementia, and it was very sad to see her change , and forget her children's names at times,
Shirley
Hello, my name is Julie and I was diagnosed with Alzheimer’s disease last year. I am currently in the Mild Cognitive stage.
It was my wife, Jane, who noticed changes in my cognition. I was having trouble tracking dates and time. Long story short, I found a neurologist: tested for the disease and was diagnosed. I am a homozygous carrier of the E4 gene. Two alleles, yikes!
From diagnosis forward, I’ve spent many hours researching the disease online. The information is voluminous - encyclopedic, which is so helpful! I found a site for homozygous E4 carriers, it’s easy to join and full of information. There are personal stories, events, science & research, treatments..etc. For anyone interested go to: ApoE4.Info to sign up.
In an effort to keep my brain in good shape I’ve upped my exercise. Swimming 100 laps per week & walking a lot . Anything I can do to slow the disease is my primary goal. Most days I feel okay. But fear takes hold too. At odd moments, I feel sad about my fate. So be it, all I have to do is get moving and I’m better.
I’m an Alzheimer’s news junky. Online a lot, researching everything I can re treatment. There’s a wealth of information. Online seminars too, from various universities around the world. I seek hope for a cure. Leqembi is the most talked about drug treatment these days. However, being an homozygous E4 carrier puts me at high risk for a brain bleed. I’ve been investigating a new potential treatment: NK cell therapy. Time will tell.
Lastly, I wish I knew someone locally who has this disease too. A fellow traveller to share info, ask questions, and share time.
My best to all! Julie
It was my wife, Jane, who noticed changes in my cognition. I was having trouble tracking dates and time. Long story short, I found a neurologist: tested for the disease and was diagnosed. I am a homozygous carrier of the E4 gene. Two alleles, yikes!
From diagnosis forward, I’ve spent many hours researching the disease online. The information is voluminous - encyclopedic, which is so helpful! I found a site for homozygous E4 carriers, it’s easy to join and full of information. There are personal stories, events, science & research, treatments..etc. For anyone interested go to: ApoE4.Info to sign up.
In an effort to keep my brain in good shape I’ve upped my exercise. Swimming 100 laps per week & walking a lot . Anything I can do to slow the disease is my primary goal. Most days I feel okay. But fear takes hold too. At odd moments, I feel sad about my fate. So be it, all I have to do is get moving and I’m better.
I’m an Alzheimer’s news junky. Online a lot, researching everything I can re treatment. There’s a wealth of information. Online seminars too, from various universities around the world. I seek hope for a cure. Leqembi is the most talked about drug treatment these days. However, being an homozygous E4 carrier puts me at high risk for a brain bleed. I’ve been investigating a new potential treatment: NK cell therapy. Time will tell.
Lastly, I wish I knew someone locally who has this disease too. A fellow traveller to share info, ask questions, and share time.
My best to all! Julie
Julie
My beautiful mum was diagnosed with dementia alzheimers mixed dementia this year in january 2024. After i had noticed suttle changes in mums behaviour were mum was misplacing things not remembering conversations and mood swings. I talked to my mum and said i had noticed changes and i think it would be a good idea to make an appointment to see her GP. I explained to mum that sometimes things can happen on the inside that we cannot see on the outside. At the GP,s mums score was very low on the test the GP did. Mum was referred to Britton house memory clinic. Six monthes later my mum was diagnosed. Ever scince then mum has been in compleat and utter deniel. Which is heart breaking to see the person i love so dearly deteriorate. Thanks to the alzheimers society. I myself have learnt a lot on how to help mum. Also a loverly team of people from Maidstone have helped me by being just a phone call away to support me and give me strength to help me to help my mum through this heartbreaking journey. Marilyn.
marilyn
I am trying to find out what stage of my dementia is at. An what to expect 🤔 to be honest I think I have got the beginning of my dementia but I'm just forgetting the names of things. But I no wat they are. Takes me just a few minutes to remember.?
Jennifer Ann
My lovely, clever husband was diagnosed with Alzheimer’s about 12 years ago after I noticed his usual sharp memory was changing. As he wasn’t aware it was hard to convince him and his GP there was an issue. After persisting , tests and a scan finally confirmed the condition although the Consultant at the memory clinic initially felt it was depression. Little information or support was forthcoming so exploring and entering a research programme proved most valuable and supportive going forward. The opportunity to have the right PET scans and tests and information was what sustained us in the early years and it felt more optimistic.
It has been and still is a long journey with much energy needed as a carer to maintain a quality of life and find a new normal with the uncertainty of the future.
It has been and still is a long journey with much energy needed as a carer to maintain a quality of life and find a new normal with the uncertainty of the future.
Anne
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?