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I recently lost my beloved mother to vascular dementia! She had been battling the disease for a long while and the weight of the illness was extremely heavy on her and the rest of the family. Unfortunately the caregivers were not able to cope very well and one after the other were burned out. The fact none of us could do anything to prevent the progression of the disease was hardest to deal with. She eventually forgot what her children and family looked like. It is a cruel and heartbreaking disease and little by little take away everything you used to know and love…I miss her so much and she suffered a horrific death. I am angry and devastated by her loss, and hope that a cure can be found sooner than later.

My husband had dementia for 8years before he died. At the beginning it was just him forgetting names & things that had happened. It was a gradual progress to starting to forget family members & leaving the house & wandering around not knowing where he was. I cared for him at home for 5years until I couldn't cope anymore with never having a nights sleep & then unable to go anywhere as he wasn't safe to be left on his own. He went into a lovely nursing home & had wonderful care. He eventually didn't know me or any of our children. He loved music & little children & our youngest grandchildren who was about 1yr old brought a smile to his face. He was in care for nearly 3years but eventually stopped eating & developed a chest infection & died during covid. It's 4years now & I miss him every day
It's a horrible condition.

I have Alzheimers the effect of which is forgetfulness and loss of precious memories. Fortunately my husband is my full time carer so he tells me about places we have been and seen so acts as my memory. I would be lost without him with me.
He orders all my medication and sorts it for me as I cannot remember what I take. I can no longer drive so he takes me everywhere. He is also a very good cook and cooks our main meal everyday.

My late mother had Alzheimers and it was awful. The worst part was that she had a BRILLIANT memory previously.
I found it distressing caring for her especially when she thought I was her mother.
She passed away 6 years ago and I miss her so much. I talk to her every day even though I know she is not here any longer.
I have tears in my eyes typing this.

Had a dream .Was in a department store having been to a show with friends they were in front of me ,looked at a dress briefly then they had gone. Did not know which way to turn so went out of the store thinking I might see someone I knew . no idea where I was went down a few streets getting more and more lost frightened now lonely ,then saw a policeman and said I am lost, came out of dream. All through dream my good self was watching and in background and knowing I should have stayed where I was ,my friends would have come back for me. It was as if me was learning how to cope. Wrote it down and carry it in my purse if I am on my own to explain to people as cannot talk when having an episode. Do not have picture as do not know how to submit.

It began with a year or more of changes in the behaviour of my husband who was a doctor. My GP practice was totally unhelpful sighting the fact that he could still recognise his neighbours. Through the help of a family member I finally had a referral to a consultant and tests. On my one appointment with him we were given the diagnosis of frontal lobe dementia and was told there was nothing to be done and for me to get as much help as possible. At the same appointment we were told that our children could have a 50% chance of developing the same disease. My husband lived for 5years not being able to speak and needing total care. This was around 2016. I do hope that diagnosis of dementia has improved.

Both my parents had Alzheimer’s and vascular dementia. Mum was diagnosed at aged 87 in mid 2022, Dad at aged 88 in early 2023. At that time they were living independently in a large house, refusing any paid help other than a weekly cleaner. Neither was seen by a GP in relation to or following the diagnosis. Our only contact was with the practice nurse who gave them a booklet on being diagnosed with dementia which they didn’t look at because they denied having the disease.
My sister and I visited regularly, leaving in tears every time because life was becoming chaotic for them. I could write pages on what life has been like for the past two years for my parents, my sister and I as their cognition and physical health declined.

Practically, after a crisis involving a fall and five weeks in hospital for mum coinciding with an episode of confusion and hallucination for dad, we moved them into a rented apartment in a supported living complex for the elderly. . After a few months it became clear that even with cleaning and laundry done for them, a daily hot meal provided, and twice daily care visits, this was not sustainable or safe. So once the six month lease was up they moved together into a wonderful care home, dying within a month of each other 11 months later.

The financial cost of their care during this 18 month period was around £180,000, funded from the sale of their home. We claimed Attendance Allowance for them both but this is a drop in the ocean when it comes to care costs.

The emotional cost and stress on my sister and I have been unquantifiable. She is on anti -depressants and I felt broken. We were lucky to have supportive partners, to live close enough to our parents to visit often, and with the financial resources in their house to cover the costs of care. How others manage I cannot imagine.

We received zero support from the state in terms of advice or practical help. I read everything I could find, talked to friends who have been down the same path, and was lucky enough to access support from a British Legion Admiral nurse through Dad’s national service. In our experience, with a dementia diagnosis, the sufferers and their families are on their own.

I am in my mid 60’s and am determined that my children will not go through with me what I went through with my parents. I am following all the advice out there to age healthily, and will plan to ensure I live somewhere appropriate to my needs as I age. I have the financial resources to make this happen but am very conscious that so many others don’t. This country needs a holistic strategy on dementia prevention and care but I am not holding my breath.