Share your story

I’ve struggled for over a year to get a diagnosis for my mother. She has had cognitive tests over this time but it has only been through my persistence that she has finally been given a diagnosis and treatment. Social care system needs a revolution to support those with Dementia and the unpaid carers. It’s also imperative that healthcare providers are able to communicate with each other as this has caused a lot of frustration and confusion.

My Mum has Vascular dementia. She was diagnosed a few years ago . My father cooks their meals , she is unable to drive now . I am unable to be of practical use as I have learning difficulties and do not live close by. The government need to make dementia a priority .It should not be a taboo subject

Dad has vascular dementia and Alzheimer’s , it has been a complete struggle getting diagnosis and any help. He wanted to stay at home and we did this for as long as was safe, he was unsafe he was aggressive to us and carers he often went out and got lost so now in a care home just existing he doesn’t know us and cannot communicate.
I hate the way this disease is portrayed on tv that they are sweet old people just a bit confused, it is devastating and scary and rips families apart and those caring suffer the most as they are often abandoned by the health and social care services.
There should be more central care so that people know where to go for help and not get pushed all around the system and end up doing things out of complete desperation.

My lovely husband Ian died at home in March 2024, he was diagnosed with Alzheimer's disease, at the age of 68, in October 2018. He was very fit and active but then his deterioration was so rapid, it was if, he had gone off a cliff edge: loss of speech fluency, unable to go out alone, needing help to wash and dress, double incontinence, needing to be fed, unable to initiate automatic movement, so stuck in a chair, car or side of bed for minutes or an hour, complete loss of balance/falls, so needing be hoisted and sit in a till in space chair, use an electric bed, Interspersed with all of the foregoing were grand mal seizures, and later absence seizures, plus urine infections resulting in admissions to a and e,, where there are no facilities to care for people with advanced dementia, nowhere private to change continence pads. Long waits for my carer's assessment and his occupational therapy assessment were stressful. Further problems occurred with epilepsy medication causing him to be drowsy and sleep all of the time, and this exacerbated swallowing problems, so all food had to be liquidised and drinks thickened. He had a beautiful smile but during the last. year, this disappeared and he did not know me or his daughters and grandchildren.This was heartbreaking. We were lucky is that we had good support from family, friends, private carers and care agency staff. We encountered an excellent Social Worker along the way and the Council put in a wet room for him. The rapid response team provided some very useful equipment such as a hoist very quickly. Our GP surgery made sure that he was on the Respect pathway, so we could try and avoid unnecessary admissions to hospital, and we had a DNAR in place. Until the last few months, he had to fund his own care, and so his savings were decimated, and he was turned down for NHS continuing health care.

My Grandma first started showing symptoms of dementia before covid and we managed to persuade her to go to the GP. The GP conducted a short assessment and told my grandma she didn't have dementia which meant she thought she was fine and would not go back for another memory assessment as her memory got worse. She said 'all my friends my age are like this'. In Spring 2023, she became unwell in her home where she had lived independently for over 25 years. She had delirium and was admitted to hospital. She was discharged to a care home because of her complex needs and on-going delirium. After a further year or trying to get a diagnosis (so another year without dementia medication, a care plan or sufficient support for her or my mum) she finally got a diagnosis of dementia. We believe that she has had dementia for a while and this caused her to self-neglect and ultimately need to be admitted to hospital from the complications. I wonder how much different her and our families life would be if she was diagnosed years earlier and got access to the medication she needed. She is now in a care home and has good days and bad days. It is heart-breaking to see her so far from her usual self and losing parts of herself everyday. I wish that the government would do more to get people diagnosed when they first develop symptoms so that if they have to live with this horrible disease they can do it as well as possible.

We didn't see Dementia creeping up on my Mum, it seemed to come into her life in 'dribs & drabs'.
I first noticed that things weren't going well for Mum when I asked what she had had for her lunch & she described her meal totally, but when I checked the fridge, none of the items she had mentioned were around & her freezer hadn't been used for so long it was frozen shut with ice. This was back in the late 90s, when Dementia was not spoken about, it wasn't even really recognised.
With a young family, myself & my Mum battled on & it wasn't until I was on my knees not knowing what to do that help was provided by the Manchester Social Services. My question was 'Who helps the Carer?' & unfortunately, although 25 years forward, I feel that this is still very much the case. That conversation with someone who understood, helped me & my Mum no end.
My Mum & our family lived with her Dementia for 25 years +. We were the lucky ones, we made it work for us all. Her needs always came first & this caused a number of strains on my family, ending in divorce.
I feel that not much has really changed, I happened to change career & started to work for a Housing Company where my Role included supporting clients in Sheltered Accommodation who had Dementia & we were given intense training so we absolutely knew how to spot the signs & also to treat & support people with this dreadful illness. This training helped me so much with my own Mum, it was invaluable. But where do others who are not as lucky as me & can't navigate the internet get help & support?
My Mum's illness was diagnosed as Vascular Dementia & we had regular Check-ups at the GPs & sometimes with Consultants. I was very lucky & although my Mum had this disease, she just had 'blips' & anxiety from time to time which we were able to work through together. She always knew who we were & never lost her cheeky sense of humour!
With the help of a wonderful Care Service, Cleaner & Scheme Manager she was able to live at her Older People's Sheltered Scheme in a 1 bed flat for a number of years. Until she was 93 years old in fact, when her Dementia progressed from Vascular Dementia to Lewy Bodies & this meant that she had bouts of delusions & hallucinations which meant she was no longer safe on her own.
She moved into Residential Care & was there until she needed to go to hospital one early morning & unfortunately her illness had progressed to such a stage that her swallowing reflex was very difficult & some food had entered her lung. There was no way back from this & she passed away very peacefully with me by her side the next morning. She was at peace & died as she lived, in a quiet, happy place - with me, telling her that everything would be ok. We miss & think about her every day & always will.

My wife first started showing the signs of dementia in 2009 but finally went to see her doctor in 2011 and after tests and interviews including myself she was diagnosed with early stages Alzheimer's. Deterioration was slow and in 2013 she had a fall in the garden and broke her femur, which meant over an hours operation with metal pin inserted. In 2015 she suffered two minor strokes after which her mobility, eyesight and hearing were badly affected , and in 2017 after a number of assessments by local mental health team she was placed in local care home. By that time she also had no idea who I was. The home was a specialist in dementia care and I cannot fault the love ,respect and attention she received until her death in April this year at the age of 87--we had been married 64 years. Although the home was about 4 miles away I visited several thousand times to visit and sit with her, although of course she had no idea who I was. I had to travel by car as it was only option and during the fifteen years till now I was not able to take a holiday ---in fact even if I could have afforded it I would have felt guilty, but I do now feel I have missed fifteen years of normal life which I am sure many others will have felt the same, so dementia is an evil disease which so drastically affects the lives of their loved ones, and carers like myself will know only too well that little or no financial help is available from government or other sources.

My mother’s memory problems started to show in 2019 when she was 83 and her GP referred her to the memory clinic. Lockdown the following year accelerated her memory loss and delayed her diagnosis. As I lived 60 miles away (and my brother at the other end of the country) we had unqualified carers going daily to help her with more and more aspects of daily life: meals and personal care, shopping, supervising medication and providing some company.
Things came to a head when one carer was taking a holiday, at the same time as me, and the other couldn’t provide the level of support my mother needed. We moved her to a home, near my bother as it was cheaper, and I got on with clearing out her home in order to sell it. It was painful having to dispose of a lifetime of her possessions before she was actually dead.
The house has now been sold which secures her care home for at least five years, but the last time I visited her, she asked me when she was going home…