Share your diagnosis story

I am confirmed Alzheimer’s and dementia 2 months ago
2 years ago I noticed I was not finishing a conversation with a particular detail. I saw my GP he sent me to Memory clinic. I went through a list of questions to test memory.
I came out 94 per cent ok.
New appointment 12 months later for same questions and after a head MRI scan. It was found I had one dead Lobe in the centre of my head. This resulted in a consultant visiting me at home.
Then shortly afterwards confirmed with the above. I now have list of activities, and lunch/ cafe dates to fill my time.
Alzheimer’s society have been excellent with help. I am now in my 8th week from confirmation. So early stages, I’m finding myself online looking for food that has a positive effect on my brain and not.
My wife is also keeping an eye on me.
I have to say that it’s a type of disease that creeps up on you so it takes a while before yourself realise or partner can see very small changes. This is where the time from the beginning of symptoms to being obvious before one gets a GP assessment
and then scan and memory clinic. Once that is done things tend to move at a speed according to NHS availability.

I was diagnosed last Christmas it was a shock im64 I had a good Specialist I have good medication ihave Dementia and Alzheimer try to be positive I have a supportive family and friends

Both my parents had vascular dementia. It was truly horrible watching them change, lose who they were and ultimately die as a result of the disease. Dad required extra support, but many carers were not properly trained. Mum's assessment was just before lockdown, so we weren't supported. We were lied to, mum suffered abuse whilst recovering in a care home, but no-one was interested as covid took over. Once home, she didn't want outside help, so that was largely down to me. 161 hours a week for £67, but to pay carers would have cst £3300!! The whole system is wrong. Will I get this too? I have no children to look after me, as I looked after my parents.

I first suspected my father had dementia six years ago, but he has been resistant to an assessment. At first agreeing to it and then becoming abusive about the whole situation. I still do not have a diagnosis and it is not as easy to get someone assessed as it should be. He has finally been advised not to drive, but is not accepting of this either. It is terrifying.

I knew my dad and others in my family line had had some form of dementia... at 73 I was sent to neurologist by family doctor. Getting a diagnosis is hard...blood test not available in my area. I'd like to see more acceptance and social support. I feel left out sometimes...

My son was going through a stressful time and worried about his memory. His GP suggested he try a research project into memory loss . My husband went with him as his buddy, a person who knows the patient well enough to answer questions about him. It turned out my son wasn't able to continue with the project. So they asked my husband if he was interested. That is how we discovered my husband does have early dementia, We were aware he forgets things and repeats himself but our GP said he was O.K.. As a result for over 18 months now he has been having monthly infusions, from a very reputable sponsored project, ( we've seen them on T.V and in newspapers) and regular scans etc. We know it isn't the answer to the full problem but we are told it has had some success and we are more than happy to know that it is contributing to a possible future cure. My husband continues to lead a useful and active life. We can only hope that it is helping him too.

my 77yo wife developed dementia after two major abdominal operations ( first one due to mis-diagnosis) within three weeks of each other - assumed to have been caused by the very powerful anesthetics.
we had a notification (july 2023) from our local mental health people that they would visit to assess her in 6months time (jan 2024). they never came. i contacted them (april 2024) and they said our case had been closed?
my wife is bedbound 24/7 with dementia, ileostomy and a club foot (the deformation beginning when she was discharged from hospital july 2023).
i am her carer and do not know whether a formal medical diagnosis is important or not.

I knew something was wrong with my wife. She was getting lost in our own home. Things like asking where the bathroom was, when we have live here for 14 years. On more than one occasion we looked for help from our doctor. All the doctor would do was to carry out a simple memory test. Giving a name and address for my wife to memorise. Which she could manger to do. It took pushing by me to eventually get an appointment with the memory clinic. This was with a very unhelpful woman who eventually agreed to a brain scan. This scan confirmed vascular dementia

My wife was diagnosed with vascular dementia after a couple of years where her behaviour had become more agitated and her memory was deteriorating.
The medication does not really help and my wife is now refusing to take it. When other people come to see us she can mask her condition really well, which makes it look like she is coping with everyday tasks. It’s been difficult for me seeing her change from the person I married to just a shell of a human being, with no interest in life. I am up at night but get little rest during the day.

My dad had become forgetful in terms of his short term memory. Mum accompanies him to appointments because his processing of information is slower and he can't always recall information he needs to provide. If anxious about forgetting upcoming appointments, he becomes fixated and can ask us 5 times in 30minutes. This happens throughout the day. It is exhausting for us and worrying to him as he is unaware of the repetition. I want decision makers to know that adverts and information all stress the importance of early diagnosis yet for the first few years, practitioners repeated oral question tests and said there is improvement and mri's have shown no damage to indicate dementia. My concern is by the time scans do show it, it is probably too late for treatment to be effective. He has worsened in other ways which, thankfully, the memory clinic nurse has documentated from mum's accounts. At times mum has found it very hard and I have had to find my own ways to support them both. We are told medication won't help. If it wasn't family, there would be no support only 6mth reviews to inform us of his progress which we are aware of anyway as we see him daily. Before diagnosis dad thought he was going mad and worried a lot because he hadn't been given a diagnosis therefore couldn't understand what was happening to him. Early diagnosis could have reduced this. For those carers who require DLA or PIP, the paperwork needs to be greatly reduced in its length and complexity as several older people I know of have abandoned it due difficulty completing it. Help that is easily and quickly accessed will be a massive help and will not cause adfitional stress which those affected do not need.

I am a 77 yrs old married man with a digagnosis of frontal lobe alzheimer's which I inherited from my late mother who had parkinson's ( parkinson's is caused by a lack of dopamine in the brain) I am on donepezil Hydtochloride 1 M0 mg in the the morning and Memantine Hydtochloride 20 mg at night I still retain a lot of my long term memory I under stand that cases of frontal lobe alzheimer's that the short term memory is the first to go ?

My wife of 50 year's who has had a heart op and cancer, had a very hard upbringing, and has just been diagnosed with Alzheimer's she has been very brave and we have had some wonderful help from a Memory Clinic . l am just coming to realise what the future has in store for us both. I just hope l will get help when I need it from the Council and the Government.