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My partner has terminal cancer. After problems with memory, he sought help from his GP. The local memory service and consultant there diagnosed Frontotemporal Dementia, which wasn't correct. We were concerned about the diagnosis and sought further advice from a consultant neurological consultant, who eventually confirmed Alzheimer's Disease. The delay in an accurate diagnosis delayed the start of drugs treatment. We have sought a second opinion as our confidence in the diagnosis was dented very significantly. So in summary, my partner has been battling terminal cancer for 11 years and now has moderate Alzheimer's Disease. He has multiple other health issues that are in the main the consequences of extensive cancer treatment. Stephen receives great oncology health care but other support is virtually non existent. We want government to put in place decent social care support for those with dementia and their carers.

My dad was getting memory impairment - we could see this as a family but it took a while to get a diagnosis - he was super-intelligent and so those who didn't know him would have thought he was just normal even as we could see he was becoming impaired. He was eventually diagnosed with vascular dementia. We had noticed by the time dad passed away that mum's memory wasn't so good. She I think was in denial and could mask well and pretend everything was OK to friends who didn't know her well. Eventually she agreed to an assessment and was diagnosed with Alzheimers. She's quite advanced now and is happier since she agreed to go to a care home - things were tough at home - she would wander and fall over outside. Early diagnosis is important to me because I am well aware I have a high risk of dementia and would like to get started on treatment as soon as is needed and spare my family from the challenges we have had.

My dad was painfully diagnosed with early on-set Alzheimer’s at the young age of 51 after several years of tests and tears. Last year, at 34 years old I found out that I shared the same fate, as I was diagnosed with the PSEN1 gene mutation which means that I will get early on-set Alzheimer’s at the same age as my father. I’m now 35 years old & urgently need the government to try & help find a cure. I want more time, I wish my father had more time, & I don’t wish anyone to go through the torment my family’s gone through. More funding for research is the only way to help anyone that has been affected in any way by this disease! People think of Alzheimer’s as an older persons disease but this isn’t always the case, sadly I wonder if people realised that it might be given more attention?

I spent 11 years caring for my dear mum and dad who both had dementia. No symptoms were the same and I felt helpless and just learned through reading articles but never did understand the best way to deal with their symptoms which were ever changing. Please get families help in dealing with this cruel and relentless disease.

My mother was diagnosed 2 years ago, although I suspect she’d had it about 5 years by then, she would not even talk about it or see doctor as she’d seen her own mother with Alzheimer’s in the 80s. We saw our GP, who referred mam for memory tests, as I sat with her during the test even I was shocked by some of the things mam could no longer draw or do. She was diagnosed following this and put on medication, after 6 months on medication (she still takes it now) the specialist discharged her, since then she has had no contact from hospitals, GP, CPN to check how she is doing or how her and my Dad are coping. Both are mobile and healthy, bar Alzheimer’s , but as time goes on, the asking where her mam is, or when is she going home, repeating constantly, and the ability to pick out what to wear, wearing clothes that she would never have worn together as she was always so stylish, hiding things incase they get stolen etc etc. This is such a cruel disease and needs more government aid and NHS support. My dad is doing a fantastic job looking after mam and I am their carer, other family members help and support too. I do often worry about people living with dementia and how they cope without a support network cope.
This disease takes so much from families I pray for a future with better treatment and medication that will hopefully eradicate this cruel disease.

My husband was diagnosed with Alzheimer's disease, days before the lockdown in 2019. At that time the disease was already quite advanced. Unfortunately with it being lockdown we were not able to access any help at all. It was a horrific time and my poor husband was sectioned and taken to a MH hospital where he was given medication and stabilised. When I first approached our GP regarding my fears the doctor was reluctant to make a referral to the Memory Clinic, saying he had to ask for a referral himself as it was against his human rights otherwise. The doctor considered the greater risk to my husband was a heart attack so prescribed statins. Within three months, my husband's symptoms escalated to a frightening degree. He is now in a nursing home and has further deteriorated. Had we had a more timely diagnosis, we may have been able to have the support at the right time and be in a different position.

Getting a diagnosis for my husband’s Alzheimer’s was a mission. I recognised symptoms a couple of months after a cancer operation. I persuaded him to go see a doctor even though he insisted there was nothing wrong.
He was fobbed off being told after a urine test that he had a urine infection.
He continued to have more and more symptoms and 20 months later I insisted we go see the doctor again. This time, two questions into the test he was referred to the Memory clinic. It took another 7 months before he was seen by them and diagnosed after all the memory tests and CT scan.
He sadly passed away 2 months ago, not from his Alzheimer’s but lung cancer and I am so glad he didn’t get to the stage where he didn’t recognise any of his family.
More needs to be done to get an early diagnosis as had my husband had medication earlier his last few years would have been more easy to deal with as I became his carer after having to retire 3 years early to look after him.

My husband was diagnosed with mixed dementia(vascular & Alzheimers) in Feb 22. But myself, family and friends saw a change in his personality from 2016. Following an incident on a tube train in 2018 that was out of character, we got a referral to a consultant, a memory test was done. I found it was mainly a memory test which at that time he was not presenting with greatly, the main issue being the personality changes, apathy, more argumentative, isolating himself from family, not being able to follow conversations so didn’t engage, would misunderstand words said to him, but this did not appear to be addressed and no Dementia diagnosis was made. The pandemic then happened causing distance and isolation for us all. In Aug 21 he attacked his son in front of his grandchildren for no reason. I sought another referral and in Feb 22 we got his diagnosis. The Alzheimers part of his illness had become increasingly apparent in 21. Following diagnosis, I had to monitor what he used his payment cards for, track his movements away from the house, avoid arguments etc. The attack on my son had meant meant they couldn’t visit anymore for their safety. In Jan 23 things got considerably worse with his behaviour becoming more aggressive and with psychosis, and threatening to kill himself, walk in front of a car etc so mental health became involved, and in April 23 he became necessary that he had to be sectioned for his own and others safety. He is still in a mental health hospital as despite various changes of medication his presentations fluctuate a lot even within one day, and during the last year now requires more personal care. I go through periods of guilt because I accept that he needs 24 hour care, but he is still only 73, still physically strong with healthy organs, which means that potentially he will have to stay in hospital/care environment for many years. He is unable to understand or accept this and from his view point is not a life. His fluctuating presentation is even making it difficult to move him from the hospital in a care home. Although it is a hospital I cannot fault the daily care he receives, which involves quite a lot of one to one care, but the comment quality of life is often used and as far as I am concerned when a person with Dementia reaches this stage there is no quality of life, just an existence till death knocks on the door. I am now of the opinion that once you get to a decent age even a terminal diagnosis cancer or other illnesses is better than Dementia, where at least you still have a mental capacity to take pleasure in the things you enjoy for a long as the illness allows.