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COVID lockdown was a horrendous time for many in the UK. Unfortunately my Mum developed Vascular Dementia following a Small Stroke immediately prior to COVID hitting the UK. Appointments with specialist were cancelled and it was impossible to get any form of practical help from anyone. The UK MUST be prepared for a similar future pandemic or other national emergency: dealing with Dementia is difficult at the best of times and it was simply impossible to get help for Mum from anywhere. Including the Court of Protection. This simply cannot occur again, we MUST be prepared !!!

I was locked in a Perspex box hammering on the walls screaming for help and the world outside just walked on . I was a prisoner too ! That’s Dementia for a carer without help . John had the disease but we were the real sufferers. HE was loved and supported, but it was US who needed the help . I loved him , but I was locked in his cruel prison too ! No one came . Everyone cared but nobody came. Like crying out alone on a dark forest … HELP ME !!! That’s DEMENTIA

Both my grandfathers were long lived and suffered from "dementia". My dad died young after smoking too much, something I have never started. My personal opinion is that the issue should be called "fullmentia", not dementia. I can still remember the route I took when walking to school aged 6, but not what I did yesterday. I also suffered, in my late teens, from a very extensive education, filling my brain with all sorts of information that is rarely, now, of any practical use. We need memory expansion/extension, although I cannot really think we are yet able to access our brains that cleverly. If the digital revolution that we have now lived through could provide this solution, it would all have been worthwhile. If not, it is a worthless distraction. Over...

Working as a nurse for 37 years I’ve worked with many patients and families living with Dementia, 7 years ago my dad died after living with mixed Dementia, Alzheimer's/vascular for7 years, as a daughter and nurse, we navigated through this cruel disease, little by little Dementia stole my dad, until he never recognised me . I now work as a Dementia specialist nurse for Dementia Uk and my local hospital. Working with patients and families living with Dementia, no two days are the same, I laughed and cried with families and also shared my experience, we also work alongside Dementia advisors for Alzheimer's society .

In 2019 my Nan got diagnosed with Alzheimer’s. The rock of our family, a true angel. At first her symptoms were memory loss and becoming repetitive. She became more irritable with family members and was quick to loose patience. When Covid hit in 2020 her state decreased more, asking questions over and over again getting stuck in her loop as we used to call it. Nans jokes started becoming more unhinged as her Alzheimer’s developed, her “filter” was completely gone within a few years. In 2022 she was hospitalised after having an untreated water infection and suspected pneumonia. When she returned home after a week (without having her medication in hospital) she had changed again. She was disorientated, forgetful and loosing weight rapidly. She didn’t want to eat anymore. By luck she recovered from her hospital stay and started eating again and is back to full health. Over the next few years my nan became more and more like a stranger. Her shy and lady like personality became more boisterous and she said whatever came to her head. Slowly it was getting more challenging to take her out in public as she was making rude remarks or commenting on people’s appearance, so unlike my nan who always had a gorgeous soul. Thankfully, my nan is still with us today but it’s not the nan I recognise anymore, her personality has changed, her outlook on life has changed and her filter is completely gone. Her close family and I take her out for any shopping she needs every Saturday as part of her routine. However, we have all noticed she is starting to struggle to walk and would now much rather go in the car. My nan went from enjoying keeping to herself and her only care being her family’s welfare, to having no filter with any of us and forgetting close family members (although we all know deep down she’s still watching over us in her own way). I think it should be common knowledge that Alzheimer’s is not simply getting a bit forgetful and respect is still due for those who have lost themselves to this cruel disease.

I care for my husband Andy who was diagnosed in his mid 50s. At such a young age, It’s very challenging trying to manage him and also being mum to our kids and also working full time. His condition is deteriorating monthly and it’s heart breaking to think he won’t see the children properly in to adulthood. Also a lot of dementia resources are also focused on more elderly people and as a young onset family it’s isolating from many people our age too

Following a fall at home in May, my husband has now been diagnosed with Alzheimer's alongside MS related dementia. He is now in a care home as he never came home after his fall. Living a life one day - although he was becoming increasingly difficult- and talking nonsense the next! The guilt, the shame, the anger, the false hope, the steep learning curve of how to communicate with a loved one with dementia. What a sad indictment on our society that carers are so little valued and have to navigate a broken Care System on their own. Financially, emotionally, spiritually, physically broken... and it's only been a few months.
More research is desperately needed into this devastating disease.