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My mum and dad both had dementia, mum had vascular dementia died in 2008, dad had Alzheimer’s died in 2017. Dad had many stays in hospital due to
Physical problems and the hospital did not allow for his Alzheimer’s, the family had to be there to give him water, the staff complained about his aggression and I suspect his patient notes have been accessed by staff who didn’t need to see them. We need better awareness and care in hospitals, not just notices on walls saying dementia friendly.

We knew mum wasn’t right, lots of little things started happening which weren’t too odd in themselves but put together made us quite worried. I was diagnosed with breast cancer around the same time and living 250 miles away from her. Mum’s GP was so unhelpful, thought my illness was making me neurotic and that I was merely unhappy about mum’s standard of housekeeping and took her at her word for how she was coping. I got better and she got worse. Eventually diagnosed with Alzheimer’s after emergency admissions to hospital. Still not really managing despite a care package in place. I eventually took matters into my own hands (with support from other family members) and put her into an appropriate residential home. Social Worker implied I’d kidnapped her! She lived for a further 3 years in the home which was a safe and nurturing place for her. I’m still upset by the GP & social workers, and don’t even get me started at the financial side of things….

It took me twelve months to get my diagnosed . We had to argue our G P until they sent us to the memory clinic.

A timely diagnosis depends on the loved one agreeing to go through the process. It took about 3 months to persuade Val to receive the memory tests and CT scan. The outcome indicated she had Fronto Temporal Lobe dementia. No medication or follow up support. The diagnosis heartbreaking as it was gave me a clear understanding of the illness. The future as short as it was. I had been a sole carer for about 8 years. I searched the Web and found numerous support groups run by volunteers.
I joined 'Oakley Friends' A group for Carers of those with Dementia. 2 x10 week courses and monthly sessions. Informal, but vital to get information, advice and guidance. An early diagnosis precludes doubt
Allowing family affairs to be sorted and support identified. With so many in the UK suffering, this should trigger Government the required strategies, resources and adequate funding. As Carers know it is one hell of a journey and your life stops to care for your loved one.

I noticed my mum's memory was beginning to go before she turned 80, her partner also mentioned it to me. I asked for her to be assessed and in time someone came out to see her, she passed the first test. I was still concerned and felt the test was easy for her as she could follow simple instructions and hold a conversation. Six months later she failed the second test and was finally referred but a head CT scan took another eight months to come about. The upshot was she had Alzheimer's and was put on a drug to slow down the decline. Unfortunately the delay meant that she had lost all her short term memory which never comes back. She's about to turn 85 and she forgets things 2 minutes after you tell her something, she needs help to understand information and I have to take her to any appointment she has.

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.