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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 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.

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.

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.

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.

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 .

A very dear and long-term friend of mine died of Alzheimer’s, unfortunately her two sons have the gene, her father died of it and her mother had another form of dementia. Also my daughter-in-laws father is badly suffering from it too. He has a very unusual strain which only a few percent of people suffer from. He is such a lovely man but he’s not that person that he was at all, it’s heartbreaking. Such a cruel disease.

When my dad sadly had vascular dementia it was so stressful. He had “carers” go in which he resented. My sister & I & a friend popped in 4 times a day spending time with him but were constantly reprimanded as he hadn’t “seen anyone for days” He couldn’t manage his own tablets, couldn’t keep himself clean and point blank refused to let anyone else help with personal hygiene. He got “stuck” holding onto a mantle piece as he couldn’t remember how to move his legs. Possibly standing for some hours between our visits. Very very stressful & sad.