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My husband was diagnosed with a cognitive impairment after having an episode of delirium in 2018. He was only 66 at the time. His memory is steadily getting worse things he remembered yesterday are forgotten today.
He was a Carpenter by trade and could turn is hand to most things but now he becomes frustrated as he can’t even work out flat pack furniture.
I still work full time as we haven’t the money for me to stop and look after him which in an ideal world is what i would like to do. I really feel that I should be able to do this.
I often find myself in floods of tears just remembering what we had together and now what we have been robbed of. The future really frightens me I love my husband very much but now feel like a carer Not being in a position to stay home makes me feel quite upset. We get no help My husband doesn’t like being on his own and I think it really worries him.
We take each day a day at a time

Trying to get things moving for Dad to get specialised care was so frustrating and painful as there seemed to be a lack of urgency initially and then complete lack of resource for him and family. It took time for the right nursing home who gave incredible care but it was a distressing experience. At least we were a family who could raise issues and fight for Dad. There are so many people without families or support who can't fight their corner and won't get the best care or treatment in both dementia treatment and routine health issues. The general medical world is not trained in dealing with dementia. We need knowledge and resource.

We lost Mum in 2010, Mum was finally diagnosed with
Lewy body. I didn’t understand, I wish I could have had more information, I could have helped Mum more. So anything that can help families understand Dementia now would be a blessing.

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.