Share your story

My mum was diagnosed with dementia 2017,she passed away 4/5/24. It took me 7yrs to receive any help with my mum, and it all came to late, we were only aware about different benefits she could claim,no-one told us nothing

My mum got her diagnosis over 5 years ago. She asked to be tested herself, because she was embarrassed by forgetting names. Initially a few agencies called by to offer support and help, but she didn't want/need it. COVID hit, she was left on her own, we lived too far away to offer much help
It's a degenerative disease, but doesn't seem to be classed as a disease, it's a social situation. 2 years ago she blatantly wasn't coping, but she was deemed to have capacity, so no-one cared, when she refused help. Realistically this seems to mean you can self neglect until you either have an accident and need hospitalizing or die. She stopped remembering medication, forgot to eat, forgot who we were, hallucinations about people living in her house. At this point we had to trick her into a care home. Social services were not interested in helping, because she didn't want help. It is so frustrating as a family member.
She was malnourished, but is now warm, fed and happy in her own way.
In the meantime we have cleared 5 skips from her house, 30 plus bin bags of clothes to charity, 3 removals vans of furniture etc have gone to auction, and we now have to sell her pride and joy to pay for her care. She would be heartbroken. Every time we visit a little more of her seems to disappear, 😭.
This is a disease, not a social situation. People should not have to lose everything because of it. Carers are worth their weight in gold.

Both my grandfathers were affected by dementia. My dad, a second world war veteran, didn't live long enough to show symptoms, passing with a heart attack at age 49. I am 75 and have had "Alzheimer's" for several years, nearly a decade, now. Of course I have received a diagnosis and been given "medication", but there is now way to show whether or not the brain is affected by the drug. I used to be an aerobatic flying instructor and champion competition pilot. I still have good situational awareness, but now I am not allowed even to drive a car. I am nowadays driven everywhere by my wife, and am clearly able to see risky situations arising no later than she does, but they still won't even test my "situational awareness" to see if could actually drive safely. Ho hum ;-(

I had to persuade my nans GP that something was wrong, after doing a mini assessment she concluded all was fine, I had to say that I would return with her day after day to evidence that there would be different outcomes each time the test was done! In the end a referral was made to memory services and we eventually got a diagnosis of Alzheimer's Disease. My advice to anyone would be to be persistent, you know your loved one the best! My nan lived well with dementia for 10 years, had it not been for the pandemic, I think she would still be here now, we lost her to Covid in 2021. I know work for the Alzheimer's Society so I can use what I learnt to support others on their journey.

In April 2023 my nan was with vascular dementia after waiting months for an assessment by the local adult memory team when we received my nans diagnosis we was informed there was no medication for this form of dementia and we was left to deal with things as a family my grandad was my nans main carer although I did offer help and support to both my nan and grandad as much as I could if only we knew a mouth dementia uk we wouldn’t of felt like we was on our own unfortunately we then lost my nan in her sleep in July due to how quickly the dementia progressed. The British government really need to make dementia a priority so other family’s and dementia patients get the help and support that is much needed

Our journey for diagnosis for my dear old Dad has been a very long one. This is not a usual story unfortunately!

My Dad has always been super active and sharp, and gradually this has slowly declined. For Dad it was more the physical aspect. Living in beautiful south Devon, coastal walks and beach visits have always been a family favourite, but Dad started to struggle with these activities more and more.

Thankfully, my sister and I are very lucky to have a very proactive stepmum who has pushed very very hard for a diagnosis. This has been endless phone calls, appointments, scans, and unfortunately misdiagnosis’s which resulted in quite severe depression for my Dad and huge upset and uncertainty for the rest of the family.

Finally we have the diagnosis of Parkinson’s and Alzheimer’s which means that we can at last get the medication needed but also the right support to ensure life is better for my Dad, our stepmum, and our entire family.

I noticed possible symptoms in my mum-in-law Vera in 2014. The GP asked Vera “would you like to attend Memory Clinic?” Vera said no, and end of involvement. No diagnosis meant no support, and Vera was then subject to elder financial abuse by her devious LPA. He used her money, sold her possessions and changed her will. He hoodwinked medical professionals and others that Vera had mental capacity. I had to fight for Safeguarding and for the OPG to take notice. The police did very little to investigate, and never prosecuted, closing the case down 9 months after Vera died.
No one checked mental capacity until my constant pressure saw the LPA revoked. A CoP Deputy was appointed, and I was able to bring Vera to live with me in 2018. A Statutory Will had to be established

She finally got her diagnosis in 2019. I was relieved to get the diagnosis as it opened up support of all kinds.

Prompt diagnosis is important to avoid what Vera experienced. It’s essential so that medication can be offered to help slow the progression. A referral to Memory Clinic should be treated like any specialist referral. The Mental Capacity Act needs to be reviewed to avoid misuse. All professionals need to recognise and treat with common sense and compassion everyone affected by dementia.

Vera died in 2020, not living to see partial justice done when I succeeded in a civil action against the former LPA. Vera deserved better.



[---002:007748:04184---]

My Dad had been healthy all his life. In his early 80’s I noticed signs of forgetfulness but my mum wouldn’t hear about my concerns saying “it’s just old age”. Getting him to see a GP was tricky too. ”There's nothing wrong with me”.

When we did see a GP, it was initially for blood tests, next visit was for a scan, next visit was for the results of bloods taken and scans, then the GP who could give some sort of direction to our dilemmas left. Back to square one. New GP, all tests repeated again causing lots of stress and anxiety for my parents.

Long story short his actual diagnosis was blurted out to us in the consultation room by the locum GP. She was getting stressed around Dad being quite rude and shouting so she just said “it’s because he has dementia” Hearing that for the first time was like being hit by a bus but we did eventually have a label and a reason for his behaviours.

The next steps to helping us as a family were just as rubbish. No communication. Randoms turning up at the house to chat to him (assessing him) and never saying how we could actually help him.

He’s now been in a care home for a whole year and even that took some fighting on my part. It's eating away at my parents money and my mum is constantly stressed about money. It’s heartbreaking for us all.