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It took two years before I got my diagnosis I was told your too young it’s not dementia and this is from neurological consultant but after a pet scan he said you have Lewy bodies dementia with Parkinson I was 48 when I got told that the hardest thing is society I can talk to somebody have a really good conversation then I say excuse me I might not remember your name as I have young onset dementia they will stop talking to me and start talking to my wife or you don’t look like you have dementia. There’s a couple of things they don’t tell you I lost my empathy I can’t show my family love or compassion also the moment the consultant started to call my wife my career it put a wedge in our marriage this illness is hard at any age but we shouldn’t be made to feel that we have to hide away I vowed back in 2018 that I will help people fight the stigma I live my life to the max know six years into my diagnosis and I will keep fighting

My husband Bob was diagnosed at the end of February 2024. We first referred him to the GP in 2021. He told us there was nothing wrong. We had him tested again in late 2023 and again the GP said there was nothing wrong. He was only referred to the Memory Clinic when we made a big fuss and offended the GP. Early diagnosis is not possible if GPs refuse to take family concerns seriously.

My sister has just recently passed away with young onset alzheimers she was 62 she suffered for the last seven years with it, our hearts are broken, even though you know its going to happen eventually nothing can prepare you for it, I don't think there is enough emphasis on young onset dementia even in the care home where she was for the last two years of her life most patients were older than her, this is the most devastating disease that any family can go through & I wouldn't wish it on anyone, please please bring more awareness to this disease & provide more support for younger suffers.

My mum died in June this year from Alzheimer’s. It’s hard to put into a few words how in last few years we as a family have had to watch as this cruel disease rapidly took away the person we knew and loved. She was confused, paranoid at times and her speech was greatly effected. My Dad in his 80s did a brilliant job looking after her , which was a struggle but she remained at home until her balance became unsteady, resulting in a fall and a broken hip. She never really recovered and had to go into a home as she could no longer stand or feed herself. She developed issues swallowing and was put on end of life care ( a final cruel blow). A harrowing week followed as she refused to give in and all we could do was watch and wait for her to go, no one wants to loose a loved one like this but no one wants to see them suffer either. My mum was clever, spirited. and loving she didn’t deserve this. I now know what a terrible disease this is and although it’s not the same without her I am glad my mum is free now on the other side. I want to help bring attention to this horrible disease so we can find a cure and stop people having to go through this as my mum did x

My takeaways from 12 Years as a Carer
Twelve years ago, my mother was diagnosed with Alzheimer’s, and I became her sole carer. I have no siblings and no support network. It was overwhelming—managing her appointments, mood swings, and watching her decline. The isolation was intense. She lived with us throughout her journey with the exception of the last three years, when she moved into a care home and in another country. A difficult decision, a difficult time that brought many tears, doubt and essentially a lot of guilt.

I found support by connecting with others who understood what I was going through, who were going through similar experiences and could share some words of support and guidance. This network became my lifeline. We shared our worries, bad days, and celebrated small victories. Having a space to express my fears without judgment reminded me that it was okay to ask for help, with no judgement.

One of the most important lessons I learned was to look after myself. At first, it felt selfish, but I realised my wellbeing was crucial for my ability to care for her and my family. Taking time alone, whether a walk or reading, allowed me to recharge and face each day with more patience. When my mother was in the care home, I finally allowed myself to let go of the guilt of leaving her 'behind' and trust the professionals. It also meant I could focus on my young daughter again and my steadfast husband who kept by my side.

No one prepares us for being a carer and no one prepares us for being a carer whilst also looking after a young family.

To all carers out there, know you’re not alone. Building a support network makes the journey easier, and taking time for yourself isn’t selfish; it’s necessary. Caring for someone can’t mean neglecting your own wellbeing. It’s about finding strength through connection, with other who understand what you're going through and self-care, to ensure you can provide the love and support your loved one deserves.
Finding support in organisations such as Alzheimer's Society, or going to a dementia friendly cafe to look for a few hours of respite and support, are a lifeline. Use them.

My wife was diagnosed with late onset dementia 6 years ago. I looked after until last November when she went into a nursing home. She died 7 weeks later. Our youngest son and the granddaughters 7 & 10 have been badly affected. I wish the government would be very clear on what you are entitled to claim, you only find out by word of mouth.

My husband was officially diagnosed with Vascular dementia August 2021. He also had Cerebal amyloid angiopathy which started over 7 years ago. It was a privilege to be able to look after him through the different stages, to support him through the times of him being scared, frustrated, keeping him positive, to look at the blessings we had in life, good friends, family. Some friends couldn’t cope with the difference so they stopped visiting. Which was hard as the past two years especially were very isolating. Apart from one day at Day Centre I was his carer 24/7. We were able to get CHC from last August which meant the respite was fully paid for, I was running on empty by then so was desperate for the break. My husband had began to get aggressive at times so had to try and calm him down and give him lots of reassurance, There’s a lot of fear and frustration that your loved ones go through. So just sit and hold their hand, let them snuggle into you. It’s like having a child a lot of the time, we were allocated more days at day centre and 14 hrs care at home. I was fortunate that he still was able to use the toilet. There were times when we laughed, danced, and he loved to chase our granddaughter round the house (though he was struggling to walk, and had a few broken bones due to falling) it wasn’t all doom and gloom, He would preach, pray ( I was able to make out what he said so clearly at these times, though at other times he just spoke his dementia language). I realised that though his body was failing, his spirit man was very much alive. Unfortunately he went for respite and due to dehydration caused by him being given sippy cups with lids, even though the carers were told he couldn’t drink out of them so needed a proper cup, also his food level wasn’t followed, he also had gastro enteritis at the home the day I collected him and he ended up in hospital the day after I collected him and passed away a few days later. I would encourage folks to make sure your loved one is given the proper care, Make sure if you give the care homes instructions, make sure they follow your requests. Also if you’ve experienced what we did then don’t just pass it off, make sure it’s fully looked into, otherwise, another family may go through the same trauma. Dementia is a journey, we do lose so much of the person in little bursts. It’s ok to laugh! It’s a lifeline. Wired were amazing as were Help the aged, dementia together and Alzheimer’s emails which showed us that we aren’t alone, there is help and support. I miss the cheekiness and the tantrums, the laughter and most of all my other half of over 52 years. The circle of life continues so we have to live for them… 💕❤️