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My Grandmother and Mother both had dementia. My own experience is that we are very much on our own with trying to establish the best care for our loved ones and at our own costs. Dementia sufferers don’t know they are ill - so what about all the people with no close or capable families to care for them. The cost of care is huge - the family home had to be sold to cover the costs, and the choice of suitable care homes were limited, There needs to be a standard of care for everyone - not what you can afford - it must be heartbreaking to have to compromise and feel you are letting them down. We were lucky and were able to place Mum in an excellent home - but we would have run out of money - what then? I wrote to my (then) MP who said they were working on the care home cost cap - but I know understand the new government has quietly shelved this. What happens now? She passed away after a year in the home - she didn’t know who me and my sisters were and had no knowledge of the world around her. The least we can do as humanity is wrap our arms around all sufferers and care for them.

My mother was Iris, Graceful to the very end during sentient moments where the dementia gave us a rare, poignant but cherished break from its grip as it slowly squeezed out every part of her personality and everything that made her who she was.
She worked over 16 years as a carer herself and was good at her job and sge delivered her care with respect, compassion & dignity, I was her boss briefly so can reliably attest to that fact... yet when her time came to receive that care from strangers her story was very very different!
I cared for her for almost 10 years more and more until it became 24/7 on the day the country locked down on 2020 and she was discharged from her most recent admission following a serious fall that again we didn't get to the bottom of because none if her falls/incidents were properly diagnosed or dealt with due to her having dementia. Dementia, a diagnosis they failed to give her or us as her family until she was far far along in the disease progression. They even took it upon themselves to complete a DNR order on her during that hospital admission without speaking to family and claiming my mother chose it and we know she wouldn't have done that.
I moved her all the way up to Somerset with me and cared for her and my disabled daughter together in my 2 bedroom flat. The care received there was brilliant from the GP surgery to the Intensive Dementia Service and its various professional attachments. They even helped us to get moved to a larger home to allow me to care for them more effectively and safely... but then it all started going wrong!
A catalogue of failures and lies starting with the new GP then other professional services contributed to her decline and her ultimately giving up on life because the way she was treated for the last 6 months of her life was neglectful, harrowing, stressful, because of the way she was treated differently without the full capacity to object or choose. This combined with not having power of attorney or any legal standing as a family due to their failures made it traumatic for us as a family but for me and my daughter it was a living nightmare that later contributed to me having a stroke at 48 years old.
So many things could have been done differently and my mother could have had a good life and a good death in the end if only the services provided were not discriminatory and lacking.
I make it my mission to help ease the suffering of strangers who will or are going through this journey and building blocks in the form of third sector services to bridge the gaps that make such a difference.
It's too late for us and our mother and nana but change is very much needed

My late mother lived with dementia for around ten years. Apart from the final few weeks she was cared for at home by my father who was 93 when she died. She had always cooked, looked after the house and all their business and financial affairs so I had to teach my father how to take over these responsibilities. His saddest comment (after 60 years of marriage) was that Mum was no longer the person he married because her personality had changed so much. She continued to be able to read and write, beat me at rummy and solve crosswords and sudokus with encouragement. Her favourite comment to a particular TV advert was "confused.com, that's me!"

My darling husband has Alzheimer’s - his Mother had Vascular dementia. I regard myself as a Dementia Warrior. Covid Lockdown hindered diagnosis. My GP was located in the LB Sutton but we live just over the Border in Surrey. Therefore after diagnosis we were abandoned to our own devices and I had to try to reach out for advice and support but of course it was all on line or via telephone. No face to face. Of course it culminated in a mental health crisis eventually. My darling husband had stopped any personal hygiene - and eating much of anything - no sleep. He just wrecked the house night after night. Broke furniture, emptied drawers / freezer - all the lights on, and TV. Curtains hanging off the rails etc. tried urinating in the freezer / oven. Finally went to the knife drawer when I tried once again to stop him smashing the TV. He thought the events on TV were real. The police came. And the paramedics once again. He was taken to hospital where he was restored to health after being admitted with delirium,, dehydration and malnutrition. It was horrifying. Because he refused to undress & he just wore layer upon layer, inc my clothes, I could not tell he was losing weight. . He had 6 weeks in hospital - sedated and has remained on maximum sedation ever since. For his own safety and that of his nurses and carers. He is in a care home - straight from hospital discharge. I was given no choice - I was told he could not come home again. I spent many sleepless nights when he was home but eventually, in order to get any rest at all, I was forced to totally barricade myself into the spare room overnight. Peeing in a waste paper bin in the early hours!! Everyone I meet when I am out about seems to have been touched by dementia. Their friends and/or family members. Our close friend and neighbour has just been admitted to Mike’s care home this month too. No-one should be left to cope alone like we were. It’s shocking. When I had asked my GP if I should register as Mike’s carer she just laughed at me! I thought I might perhaps get assistance? But no. Physically my sweetheart, of 60 years together, is well cared for - very frail - no mobility - but is diminishing mentally day by day. Luckily he is unaware of his situation & no longer recognises me nor our friends and family. But love conquers All! Thanks for listening.

My husband was diagnosed with Alzheimer’s March 2023. He had been showing signs of forgetfulness and illogical thinking. He was prescribed Memantine and has taken them without obvious side effects. His short term memory is shot and long term memory also partially affected. We lost our dog in May this year and she was his constant but he can't grasp that she's gone. He asks about her many, many times a day. So sad. His personal pride is diminished. He needs reminding constantly to shower, change clothes etc. My tongue is bitten to pieces but we can still have a laugh and reminisc. Family support is forthcoming but they live 70 and 350 miles away! Not looking forward to the future but we married for better or worse and we have always looked after each other and I WILL DO MY BEST FOR HIM ALWAYS. Governments need to realise Dementia is societal EXPLOSION and they must get to grips with a joined up approach to research and treatment.

David my husband passed away on 19th August 2024 . He was diagnosed on 14 August 2019, it took a year to get him diagnosed. The worse for him was to take his driving licence away even though his driving was better than some other people . In all that time we had no help I cared for him myself with no outside help apart from a family member or friend who gave me a couple of hours off . David went into hospital and was discharged into a care home were he passed away 3 months later . I am now left with a care home bill because the accessesment and paper work was not done in time , not my fault , East Devon Carers . There is no back up from anywhere , alziemers all ways say look at the web site useless . We all have to just struggle on .

My wife began to show symptoms of poor short term memory in around 2015, at the age of 61. By 2016 she had had to give up her job as a cardiographer for fear of making mistakes. We went through the laborious process of assessment leading to a scan only to be told it was clear (I will never accept that). We then began a tour of NHS departments all to no avail. My wife’s condition deteriorated and she was experiencing headaches and shoulder pain. And so we began the assessment process all over again and the delay in seeing a consultant lead to us consulting privately. In addition to a CT she also had a SPECT scan and finally in March 2020 she received a diagnosis of Alzheimer’s (logopenic PPA). The private consultant concurred. Only then could she receive any treatment - Donepezil and Meloxicam, almost 4 years after her condition meant she could no longer work. No further help or follow up appointments were offered and it was left up to me to seek information and support about caring for a loved one with dementia.
I continued to care for her at home throughout this period but soon personal care became an issue especially when she became incontinent. In October 2021 we as a family took the decision that residential care was the only option. She had now been in care for 3 years, is non-verbal but not distressed thank goodness. She receives amazing care and is happy and settled but the symptoms should have been spotted and treatment begun so much sooner.