Share your diagnosis story

This is about my husband who felt he might have Altzheimer's as his memory seemed to be deteriorating. He saw an advert for a research organisation who were seeking people experiencing memory loss for a drugs trial. He applied and they diagnosed him with early stage Altzheimer's with mild cognitive impairment. This has meant that he has been able to take part in some of the research that led to the new drugs currently awaiting approval for use in this country. He has also been able to follow a programme of diet and physical and mental exercises developed by Dale Bredensen, This has meant that 6 years after diagnosis he has not deteriorated very much.

My father in law had to wait 12 months for a diagnosis. His appointments were cancelled twice and he became increasingly worried. On the day of his diagnosis he was told someone would be in tough in a couple of weeks. He never saw anyone from the memory service for any kind of support. We supported each other as a family until his death. He never was able to come to terms with his diagnosis. He felt people treated him differently Although he didn’t feel different. He always said I am the same person I was before my diagnosis so why do people speak to my like I’m different.

Hi. My names Colin. For the last few years I have worked for the Carers Trust. Here in south Warwickshire
Part of my roll was working with carers who are caring with loved ones who have dementia
In my roll we set up carers hubs and this got people together to talk and chat among them self to share story’s and help to each other
This I feel really got people to understand Dementia learning from each other helps support them
Sadly along come the cuts that stops these hubs and get togethers from happening
Funding is needed to help these carers to get back together again
I also feel that carers need this support NOW
and not just promises that never happen
Also in my roll I have seen so many carers who can’t cope any more and end up having to put there loved ones in homes at a very high cost I’m also aware of people having to sell there homes to pay for this I could go on and on about this
I ask you all to share your story’s
Colin ..

Both my mam and dad were diagnosed with dementia around 2014. My mam died in 2021, without being able to speak or understand what you were saying for around 4 years. My dad is approaching the end of his dementia journey at 92. am 53 year old woman with a 17 year old daughter and I wonder what the future holds for me. Will I too have a dementia journey? Having cared for both my parents the prospect is terrifying.

My mother started showing signs of dementia in 2000 but received no real help or a diagnosis for many years. We struggled to support her in her home by privately paying for carers to support her to be independent as long as possible. Eventually in about 2006 she was admitted into residential care as she was no longer safe in her own home. She was diagnosed with Vascular Dementia but I can’t remember when officially. She was finally able to get attendance allowance until she finally passed away in a nursing home in 2016 aged 94. The whole experience was devastating for both Mum and the rest of the family.

My mums diagnosis was very stressful for my mum and us as a family at first it was classed as mild cognitive decline but I knew there was more to mums condition that met the eye. After inconclusive scans mum having psychosis and psychotic episodes I rang the crisis team who were amazing they listened to all of us and did a basic dementia test which then progressed onto mum being diagnosed with frontal lobe and vascular dementia. It was incredibly difficult to get anywhere with mums diagnosis before I rang the crisis team as all other health professionals kept saying there was nothing wrong but there clearly was.
As a family it’s distressing to see your family member suffering and not being able to help them I found this stressful and frustrating as mum was under 65 at the time of her diagnosis.
Once diagnosed we were discharged and left to our own devices at a time when help and support is needed. Over time mums declined quite drastically and had no medication review for 5 years.
I have to regularly ring and arrange appointments referrals day care prescriptions and other daily living arrangements. As a family I feel we’ve been let down and not listened to by health professionals at first but once you’re in the system you can find really knowledgeable friendly healthcare professionals.
More dementia services need to be available to suit all age ranges and specific needs to be catered for in all individual cases.

My amazing mother was diagnosed with dementia/Alzheimer's in approx 2011. She was a very independent woman who was still working at age 84.years. She moved from a flat to a warden assisted flat, but as her illness progressed went from a loving mother and grandmother to a person who was violent to me and had no idea who her family were. My brother and I eventually had to move her to a care home and although visiting her several times during the week, and calling me mate as she did not know whom was despite showing her family photos and telling her about her grandchildren. She eventually passed away in 2015, heartbreaking to watch her change from a loving person to the sad person she became. It's a horrible disease for people to suffer and heartbreaking for families to watch their parents fade away in front of your eyes

My aunt, my mother, my father-in-law and my mother-in-law were all diagnosed with Alzheimer’s after visits to memory clinics and my mother-in-law was also diagnosed with Vascular Dementia following a scan. They were all elderly, and refused to accept or share their diagnosis with family or friends, so the brunt of care fell to and took it’s toll on immediate family, for a long time, before more formal help was put in place, and very reluctantly accepted by them. I would like to see the difficulties due to dementia treated as a medical need and not just a social need, and for the NHS and Social Care to be combined and funded from central government, so that people with dementia get the help they need to live as fully as they can, for as long as they are able, and with the dignity they deserve.