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Dementia has impacted my family in a big way my Nan, grandad, auntie, my dad all suffered with dementia watching them suffer this awful disease we as a family suffered to it was absolutely devastating to watch dementia is so misunderstood leaving families as confused and scared as the professionals. This is a picture of me and my dad my dad sadly suffered with vascular dementia and bladder cancer my dad new what to expect because he had watched he’s mum and dad suffer he really didn’t want the same for him we used to fundraise and raise awareness we wanted to make change together but sadly my dad lost he’s fight to now I’m on my own fighting for change we really do need change I’m so frightened to get dementia I don’t want my children to go through what I have Its been a devastating journey absolutely soul destroying being a carer to my dad was so hard and exhausting why trying to be a mum and providing 24/7 care children are carers to so it effects them to family friends disappear and get on with their own life’s you get a odd phone call or txt here and there professional have lack of understanding dementia is so misunderstood we need more awareness of the impact of dementia it is not just memory loss they lose ability to think and do things for themselves they become a danger to themselves and others. Sharing my story I hope for change for all of our future the lack of funding for dementia is awful leaving families providing care. I really hope for change one day I made a promise to my loved ones that I will fight for better dementia care to stop others suffering

My mum is 60 years old and has early onset dementia. She has had it for about 4 years and is already stage 7. She is unable to speak clearly, is incontinent and is now wheelchair bound. Early onset dementia develops at a much faster pace then in later life and I feel there is not enough knowledge of this. It is often thought that it only affects the elderly but is so much more aggressive for younger sufferers. It is also harder to find care homes that are able to take people so young. My mum does not know that she has two daughters and it has all happened so fast.

My dad started becoming confused about 5 years ago At first you put it down to old age but it started becoming more and more. We encouraged him to go to the doctors but he wouldn’t. The doctor said he couldn’t do anything unless my dad went of his own free will.
We finally got him referredto the Memory Clinic in 2023 after another my mum spoke to another doctor and we got my dad to go under false pretence! At the same time, he was diagnosed with Alzheimer’s, he was also diagnosed with prostrate cancer. As his cancer was not aggressive, we, as a family and with the Prostrate Cancer team, chose not to put him through any medical intervention. He was not able to understand any of the diagnoses, the cancer or the Alzheimer’s.
My mum became his principal carer and although we sought assistance from carers (to help him shower), it was tough on my mum. Her health started to suffer, both physically and mentally. The family talked about dad going onto a home. Mum would say yes then the next day, change her mind. She felt guilty and couldn’t go through with it. Dad spent a few spells in respite care but mum’s health meant that she couldn’t do much while he was away. My brother, his wife, my partner and I helped with shopping, doctor appointments, housework and gardening but as we worked full time, we could only do so much. Mum coped with dad 24/7.
On 24/05/24, mum passed away suddenly. It was such a shock to us all. We’re still coming to terms with it. My partner and I stayed with dad while Adult Services tried to find a care home for him. We stayed with him for a week. We were exhausted when he finally moved in to the care home. How mum managed, I’ll never know.
Dad was told about mum’s death. He cried when told but had never mentioned her since. They were married nearly 56 years. They worshipped each other and it hurts that Alzheimer’s has robbed him of his ability to grieve. Dad is settled in his care home which is a comfort but he is not the dad we know and love. He doesn’t know my brother and I. He knows he knows us and that he can trust us. I would love for him to call me us by our names .
I want the government to do more for those who live with this horrible disease. We need more funding for research, funding for organisations like Alzheimer’s Society and more support for families of those affected.

A part of my dad dies every day and we grieve each time. We feel we’ve lost both mum and dad and our hearts ache for them both.

My father had vascula dementia for four years prior to his passing, My mother, almost as if catching a cold, developed symptoms and was diagnosed with Alzheimers within months of him passing away. I have been on an 8 1/2 year journey with mum in addition to the time with my father previously. My mum , now in a care home with late stage Alzheimers, has literally travelled through every symptom of every stage....living a distance away I have been through 3 cars and 3 houses in my quest to be there for her along the way, adjusting and forgetting my own life. My life has been on hold and will need rebuilding, I have no idea how to do that, her journey has been my life for so long and I find it all very scary. I will need help but don't know where to ask for it. People have been getting on with their lives for the time I have spent with parents and sorting their lives out and now I feel they they have forgotten me. When the inevitable happens I will be lost but I had to be there and show my care and I have no regrets about what I have done

FROM THE LITTLE ONES…

When I was small the world was tall and everyone was older.
I never saw them face to face except when on Pops’ shoulder.
Then one day he got quite old and didn’t make much sense
He’d start to tell us something, ......then leave us in suspense.

His words got mixed and muddled up, and sometimes none came out,
I didn’t know what I’d done wrong that made him huff and shout.
One day he didn’t know my name when I went round to play.
Granny only said “he’s old,” and that Pops had ‘lost his way.’

I understood in later life that my Pops had dementia,
I wish I’d known, I could have helped, or even asked Alexa.
So, parents, teachers, carers too, it isn’t complicated,
Just tell us what dementia is, then we’re not uneducated.

This is a poem i wrote about my own feelings about my Pops who had Dementia... same as I now have!
Going into Primary Schools in Bristol with Bristol Well-Being Service and Alzheimer’s is now my ‘Purpose’. I lost it when i had to stop working due to my Diagnosis!
Blessings, John