Dementia Support Line
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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.
When my mother was diagnosed it was the realisation...
I am referring back over ten years, to my Mother's diagnoses of Vascular dementia. It had taken many months to get the tests and diagnosis during which Mum was...
The diagnosis for my dad was too long. Waiting in limbo for 6 months to get a diagnosis and then after the diagnosis receiving minimal to no help. Diagnosis of...
My daughter who has Downs Syndrome,epilepsy,...
I looked after my lovely husband for four years with vascular dementia.it was the hardest thing I've ever done,I became a prisoner in my own home,he couldn't be left...
My wife i suppose was diagnosed very quickly as the pandemic started 4 years ago, after the tests questions and scans it was all phone calls, what sticks in my memory...
I was devastated when I was told my husband had vascular Alziemers I cared for him for 8 years it was very hard work I had visits from the memory clinic which did...
My grandmother , my mother ( her daughter ) and my uncle ( mum's brother) all got dementia, my mum had vascular dementia, by age 62 she was in a care home where she...
My mum suffered a stroke in 2020 but had been...
Here’s a simple tip. If you are caring for someone with dementia who wears glasses, makes sure they have regular eye tests to keep their eye prescription up to date...
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....
When my mother was diagnosed it was the realisation of her greatest fear, having watched her mother deteriorate and die from the illness.
Her way of dealing with the diagnosis was denial. We were not allowed to talk or mention Mum’s diagnosis.
My father cared for my mother but didn’t claim any allowances, or talk to us. He also failed to arrange a power of attorney.
After his sudden death it left us with a lot to sort out at a very difficult time.
It would have been much better if on getting the diagnosis they had planned for the future.
I am happy that we were able to care for Mum ourselves to the end of this horrible illness but knowing her wishes would have been helpful.
Her way of dealing with the diagnosis was denial. We were not allowed to talk or mention Mum’s diagnosis.
My father cared for my mother but didn’t claim any allowances, or talk to us. He also failed to arrange a power of attorney.
After his sudden death it left us with a lot to sort out at a very difficult time.
It would have been much better if on getting the diagnosis they had planned for the future.
I am happy that we were able to care for Mum ourselves to the end of this horrible illness but knowing her wishes would have been helpful.
Gillian
I am referring back over ten years, to my Mother's diagnoses of Vascular dementia. It had taken many months to get the tests and diagnosis during which Mum was frustrated with herself, feeling stupid when she couldn't function as she used to. Getting the diagnosis gave her a reason not to feel to blame for her increasing need for help.
Sadly, as she was sufficiently self funding, we found it increasingly difficult to obtain help and advice. It seemed to a case of sort it out yourselves. It would have been so much better if the advice side of things had been just as readily available to self funders as to those for whom publicly provided assistance was given.
Sadly, as she was sufficiently self funding, we found it increasingly difficult to obtain help and advice. It seemed to a case of sort it out yourselves. It would have been so much better if the advice side of things had been just as readily available to self funders as to those for whom publicly provided assistance was given.
Christine
The diagnosis for my dad was too long. Waiting in limbo for 6 months to get a diagnosis and then after the diagnosis receiving minimal to no help. Diagnosis of dementia will always be difficult to hear but it’s important and there should be more access to help and support afterwards. We basically had the diagnosis of that’s what the test says, sorry and good bye. We had to find support alone and most of those were run by charities.
I’d love to see more support for families and more access to respite care, even if it’s just day centres to help. Just anything really! A few of the places my dad used to go have closed due to lack of funding or having to move pricing up that then some people can’t afford to go any more. Care homes shouldn’t be for profit. My dad was in a care home for nearly 5 years and it was £650 a week when he went in mid 2019. Now in 2024 the fees are around £1200 per week. It’s not affordable and there’s naturally a fight to get any support for help with funding dementia care.p
I’d love to see more support for families and more access to respite care, even if it’s just day centres to help. Just anything really! A few of the places my dad used to go have closed due to lack of funding or having to move pricing up that then some people can’t afford to go any more. Care homes shouldn’t be for profit. My dad was in a care home for nearly 5 years and it was £650 a week when he went in mid 2019. Now in 2024 the fees are around £1200 per week. It’s not affordable and there’s naturally a fight to get any support for help with funding dementia care.p
Jess
My daughter who has Downs Syndrome,epilepsy, hypothyroidism,Deafness and what I consider the worst of all,Dementia. People with L/D are rarely considered and their Carers in my opinion (especially elderly) even less so.This area should be as important ,but different. Havnt seen anything that gives me hope yet.
Jill
I looked after my lovely husband for four years with vascular dementia.it was the hardest thing I've ever done,I became a prisoner in my own home,he couldn't be left because he would wander off.,us who look after our loved ones are the forgotten carers.we care 24/7. And ask for nothing,
The laws need changing its a terrible cruel disease which is still taboo.my husband would have seizures and would have to be admitted to hospital but they're aren't enough trained nurses and also no time to care for the dementia patient,my husband was sedated all the time to keep him quiet,how cruel is that.
We need change.
The laws need changing its a terrible cruel disease which is still taboo.my husband would have seizures and would have to be admitted to hospital but they're aren't enough trained nurses and also no time to care for the dementia patient,my husband was sedated all the time to keep him quiet,how cruel is that.
We need change.
Christine
My wife i suppose was diagnosed very quickly as the pandemic started 4 years ago, after the tests questions and scans it was all phone calls, what sticks in my memory was the words and you know it will not get any better , not much help after that ,having to find out what was available and with the help of Age UK and Alzheimers society which were very good at pointing me in the right direction. Unfortunately my wife is now in a care home for the last 14 months as i could not cope , i visit regular and she still knows me but the guilt i feel most of the time hurts me at least i know she is settled and really well looked after.
William
I was devastated when I was told my husband had vascular Alziemers I cared for him for 8 years it was very hard work I had visits from the memory clinic which did help I had 2 strokes while caring for him life was difficult but I loved him so much, in the end I had to put him in a home and felt so guilty I felt I had given up on him I go 5 days and be with him I dont no if he knows me he does not talk I dont think enough is done to help carers looking after there loved ones it effects all the family we have been married for 57 years my husband is still a live but this terrible illness as taken him away from me
My grandmother , my mother ( her daughter ) and my uncle ( mum's brother) all got dementia, my mum had vascular dementia, by age 62 she was in a care home where she remained for 7 years before passing, we had a struggle to get her in a care home because she was young but we couldn't get 24/7 care at home and she was a danger to herself. Myself and my siblings are terrified of getting this disease which one or all of us will probably get through hereditary genes no doubt , every time I go upstairs and think what have I come up here for I shudder , thinking is it starting ? I would love to be checked out regularly so I can find out early if I've actually got it so I can plan properly, but unfortunately if I get it I will probably be along way into it before I find out. Change is needed for this devastating condition that affects so many people, early diagnosis would be a god send.
Cara
My mum suffered a stroke in 2020 but had been suffering memory problems before that. The challenge was always getting her to see a doctor. To a large extent the stroke changed all that but it was still a year or so after she received her diagnosis of mixed alzeimers. My dad tried his best to care for her until his death last year. From a family perspective, the different agencies providing support was so fragmented . On occasion it was so hard to know where to turn. Mum is 79 now and in a specialist care home. I still see flashes of my lovely mum but she has all but gone now...she doesn't even recall my dad and they had been together since the 50s. We need more support and a full government review in how care is provided.
Here’s a simple tip. If you are caring for someone with dementia who wears glasses, makes sure they have regular eye tests to keep their eye prescription up to date because as the dementia progresses there will come a day when they won’t be capable of doing an eye test, and you will have to depend on there last prescription. And prescriptions only last two years. After that - no new glasses. And the chances are they will need them, as glasses get broken and lost where dementia is involved.
Marian
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
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?