Share your diagnosis story

I was a nurse before I retired and then became a non executive director at the local hospice so I did have some dementia training and experience but I was no expert.
My father was showing signs of dementia with his behaviour and we contacted the GP to voice our worries. The GP did not do any examination or memory testing or capacity test because my father did not think there was anything wrong with himself therefore the GP said he could not act on anything.
We eventually got help and advice from Age UK. I spoke personally to the DVLA and advised that the GP would not investigate for a diagnosis therefore they kindly listened and my dad agreed to revoke his licence. His behaviour had influenced his driving and he had started mounting pavements. I arranged for him to have equipment to help with hygiene purposes. I also arranged day care for him.
My mother and I then completed power of attorney forms and then the GP had to listen. My father was referred to the hospital and he finally received a diagnosis.
We had a social worker who visited twice and she arranged for somebody to help with his personal hygiene. I was looking for some respite for my dad as Covid and restrictions arrived to allow some respite for my mother but unfortunately because of Covid that was not allowed. One of the carers told my mother that my father should not be having help with hygiene because they should be looking after poorly people.
My father then got admitted to hospital and sectioned under the Mental Health Act and there was no visiting.
He was moved to a nursing home that deals with people with mental health issues including Alzheimer's and dementia and we could not have asked for better care.
I had some experience and knowledge but most of relatives and carers do not and often struggle and find it hard to cope. They blame themselves and often there is no break or respite.
My father since passed away with family present and a caring bunch of staff who he thought a lot of and they thought a lot of him.
There are a lot of people out there that need a voice and help and I think your society goes a long way to providing that voice and help.

My mother was diagnosed in 2019 after several months of try to get help, family members were keen to help at first but when they realised why was involved they dropped out quite quickly, then just when the remaining family members needed the help the most covid hit, it was devastating we couldn’t get any help , advice , nothing we were on our own.
Trying to explain to an Alzheimer’s patient that they can’t go out , meet people or go to bingo was exhausting.
Shortly after covid hit mom deteriorated and more family members dropped out , we were at crisis point.
It took months and months to get help of any sort
Eventually we got mom some rest bite two hours per week, when mom was at rest bite I had to shampoo the carpets and steam clean the bed I’m sure I don’t need to say why .
In 2023 mom was having regular falls and was totally incontinent we managed to get mom a placement in a care home as mom was socially helped we had no choice it was this home or no home and mom had to contribute all of her state pension except for £25 per week for her personal items .
We were totally blindsided by the lack of choice or input we had but believing it was best for mom we agreed and gave up her council flat , what an error !!!
Care home was terrible and the word care should be removed from this awful establishment, I had to go everyday to wash and feed mom etc etc .
As time went on mom got really poorly and ended up in hospital for several months and I insisted that mom was not discharged to that home.
Another nursing home was found and mom was moved there no consultation no chance to view mom has been there since January 2024 and again I go almost everyday to check that moms getting puréed food and hoisted correctly in and out of bed etc .
It’s so exhausting I’m not able to work the whole situation has changed my family and personal dynamics , poor mom was moved from pillar to post with no consultation or anything it’s so difficult and I keep on fighting for mom and what’s best for her but as a human being I feel almost debilitated by the things that have happened .

Someone somewhere has to stop treating older people as nobody’s and treat them with respect and kindness , dementia is not a choice it’s an illness that robs people of themselves and the extended family of their loved ones.

And for the families it’s soul destroying.

We were fortunate in our GP referred us to the local memory clinic as soon as she had completed her tests. The assessment was quite difficult for my husband because he is so private normally and this took us both out of our comfort zones. His memory was so bad that he couldn't answer many of the questions and I was given questions to answer from my perspective, I did these in a separate room.

I was given the results, Alzheimer's, over the telephone while I was at work. This was not ideal but I was on my own. It was a shock even though I knew something was wrong and I couldn't keep my emptions in. So sad.

The diagnosis was important so that I could try to understand what was happening to my husband and be able to make life as good as I could for the both of us for as long as possible. With the diagnosis we were able to apply for Attendance allowance, Carers allowance and Council Tax reduction, these all help towards the extra expenditure we have now, Day care , Respite etc.

Getting a diagnosis soon is important to plans can be made to help live full lives for as long as possible enabling families to have good memories of their loved one before it's too late.

yes my huband was diagnosed in feb. 2021. Doc wanted to do over the phone because of covid. I refused. next day they telephoned to say a psychiatrist would visit us at home. He was diagnosed that day. claiming attendance allowance was not difficult and made a difference to our finances. He was diagnosed with vascular dementia which has a different progression to Alzeimers,

My beloved mum was diagnosed with Alzheimer's at the age of 65. We looked after her at home until it got difficult when we had to move he to a nursing home where she died a few months later aged 72. The following year my darling dad aged 77 met a lovely lady who he married with our blessing. Six years later she,aged 68, was diagnosed with Alzheimer's and again we looked after her at home till it was too difficult and we had to move her to the same nursing home where she took died aged 73. My grandad, mums father, died with Alzheimer's as did her brother and at least 2 of her sisters. My family has been devastated by this dreadful disease with robs intelligent independent people of their future,their dignity and causes immeasurable suffering to them and their entire family. When a loved one is diagnosed the family is on their own and very little help is available from the local authorities or the national health unless your income is below the pathetic limit of £23,250. This needs to change. We are encouraged by the state to save for old age, and to own our houses but then told we are too well off to access any help or support when we most need it. My family has spent thousands caring for our loved ones and whilst we don't regret that ,it is not right. I am now 72 and am fit and well I obviously have concerns as to whether I took will be affected by dementia. If I am then I will not put my family through the nightmare of caring for me. Unless things change drastically I will be off to Switzerland.

My partner of 14 years, Kevin was diagnosed with early onset Alzheimer’s dementia in March 2014 at the age of 58. I was working full time and paying a mortgage. The progression of Kevin’s dementia was rapid and I had to juggle between a full time job and looking after Kevin. The social worker didn’t believe me when I told them I was struggling and they based their decision upon an hour long interview with Kevin on one of his good day, I asked for some respite care and was told to look to family for support. Kevin was sectioned shortly afterwards and was placed in care. I received no support and help.

Steve my partner was misdiagnosed in 2018 as having mild cognitive behaviour by the memory clinic , he lost two years of treatment he could have had. We were told there was no treatment, after two years with Steve deteriorating I thought there is something very wrong here, I asked his GP to refer him to St. George’s Hospital as I had researched the nearest hospital with a good department that dealt with Dementia. This was now 2020, during the COVID pandemic. A neurological consultant rang us and diagnosed Alzheimer’s, he did say of the previous diagnosis. I quote. It’s not mild cognitive behaviour if you have to give up your job. He prescribed Donepezil. That is two years lost that Steve could have been on that medication which makes me very cross. Steve was an extremely clever, witty man, it is all so sad. There needs to be much earlier correct diagnosis and more support, for after diagnosis you are just abandoned unless you fight for more help.

My grandma has it and has had no support,she was a big picture in my life and and so I don't want her to forget all those good time,I would like to end Dementia for good

Hi my husband has dementia,most of the time I can cope but sometimes I kneed some one to talk or text to that understand what I’m talking about

My wife Sarah, 58 started having memory issues mid year 2023, that i noticed, her memory started playing tricks on her, she believed Google was a person and was talking to her through her phone.

Sarah came to me serveral times telling me Google was coming to our home to pick her up and take her shopping, to job interviews, she was at that point working as a care assistant, moving on the Christmas day evening 2023 we had a great day at our daughters, Sarah was chatting with our son in laws parents and playing games with our 5 year old grand son, on the way home something in Sarah just clicked and she became a different person.

Her mood changed she became very agitated and was hard to reason with.

January 5th Sarah was hospitalised under section to of the mental health act, she spent from the 5th jan to the 19th of jan on the neuro ward at Addenbrookes hospital.

19th of jan 2023 Sarah was transfered to Fulbourne Mulberry 2 where she spent the next 4 months, she had numerous tests done all coming back negative the Drs were all at a loss as to what was going on with Sarah, she was hearing voices and replying to these voices, she believed people were watching her she kept to windows and looking for people, and she was talking to these people and calling them by name.

The Drs at Mulbery said there was nothing else they could do for Sarah so started arranging weekends back home, then one final test result came back and it was positive for AD, my world just fell apart, Dr Cope broke the news to us at Mulbery, Sarah didnt react it was like she had not taken it in.

Its mid May now and Sarah has been home full time about 3 1/2 weeks, Sarah has okay days and bad days, Sarah still talks to the voices and still replies to them, today 20th May most of the day Sarah has continually sat in the living room and then got up and gone to the front door believing someone called donna was at the door.

Some days Sarah seems good today has been a bad day, i can not even begin to imagine what is going on in Sarah's head and it is extremely hard not to break down infront of her, i dread to think what the future for me holds with Sarah, and i dread to think what is going to become of Sarah in time, its heartbreaking now im not looking forward to what is coming.