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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.

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

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.

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.

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.

My husband was diagnosed with Parkinson’s in 2008. Followed in 2018 with Alzheimer’s and Parkinson’s dementia with psychosis. In 2019 caring for him at home was no longer an option as he became violent which was totally out of character and I was no longer safe.
He went into a nursing home but from his violence he ended up being admitted to a psychiatric hospital for 5 months before returning to nursing home.
I have watched him disappear and die a bit more everyday until he died in March of Alzheimer’s.
Without the nursing home our lives would have been impossible their lives and support for both of us and our family was invaluable and made the lady 5 years bearable for us all.