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My Nan, little Jean, had Vascular dementia. It started much as most people’s stories - we noticed her forgetting things and getting more anxious and wanting to go out less and less. She had always had a very adventurous life - her husband, my dads step dad, was a Greek Cypriot (so growing up we had a Nan and a Bappu - Greek for grandad) We had annual holidays in Cyprus every year as kids. Nan and Bap went on to have trips all over really. When he passed, Nan lost a piece of her, but still carried on having trips and holidays with her sister in law. It was when she said she didn’t want to go away anymore, and blamed it on quite irrational things that we knew something more was wrong! The diagnosis definitely came years too late. We didn’t navigate or handle my Nan’s dementia very very at all as a family. We didn’t know what to do for the best OR where the support was. Over the space of three years after the diagnosis, she ended up having to go into a care home and it was the most horrific day. She was distraught and unsettled but there was no way she could go on living at home, despite having carers and endless support from my dad/her son. It was tough on us all but my dad did not cope well. She went into the care home in the September and passed away in the January (weirdly on her birthday) so our only moment of ‘thank goodness’ was that it didn’t drag on for years and years in the care home. I now work for Alzheimer’s Society and I often say, my only wish is that I’d been working here THEN, or that it was happening NOW, as I know I could have helped my family deal with Nan’s dementia far better than we did - supported my dad better and united more as a family. But you only know what you know, in any given moment. This is for my little nanny Jean…for the hugs, face squishes, holidays, treats, stories, support, love and absolute happiness and joy you showed us throughout our lives! For always singing ‘you are my sunshine’ to us when we arrived, and telling us how much you loved us when we left. Talking about and shining the spotlight on dementia is the only way we are going to tackle it. We can be there for everyone affected, providing that help and hope - support and research - but it has to come out of the shadows and take centre stage! It’s time.

The unfortunate thing is that the Government do not see it as a priority. Stories need to be heard and acted upon which in my situation nothing ever happens. My husband is in the middle stages of dementia he is 68 and was diagnosed in 2019 but I knew something wasn't quite right a few years before. There is little help out there to help carers, we are not professionals and if it was something like a broken leg it would be fixed by NHS but not if it is a a hidden disability. Carers need respite more than anything just to have a little time for themselves. Caring is physically, mentally and emotionally stressful and straining. I have just reached pension age 66 and my carers allowance has been taken from me as I now receive state pension which I have paid into all my life. It is classed as a benefit which is totally wrong. I am getting older, my husband is getting worse and it feels like we are being punished when we should be helped. Unless you live with someone with dementia no one actually understands what life is like, you feel like your life is also over as you cannot do what you would like to do, Bringing up 4 children and thinking in retirement you could do things you were unable to do has been taken away. I find it harder now and have less time for myself than when my children were younger. Let's hope that this type of coverage does make those who can do something to help looks into their hearts and souls and actually do something to help those with dementia and their carers. But I am not holding out much hope.

I knew my partner was developing dementia nearly three years ago when he hadn’t remembered instructions where to meet. The signs have been there ever since .We then went to the doctor who tested him and said he was borderline then. Since then we have had several doctors’ visits when my husband got exasperated with the test. He has recently been diagnosed with Alzheimer’s and started on donepezil. We both get very frustrated and he gets depressed. Hates the thought of not driving. I admit to losing my patience which doesn’t help I wish he could talk to someone other than me. We haven’t told anyone yet I guess it preserves the status quo for a bit longer. Memory is the biggest problem. I feel I cannot leave him for longer than half a day as he wouldn’t be able to cope I feel we are both living with dementia! There is some local support but not sure what yet. I cannot see him joining a dementia group of like minded people. Too proud! He sees it as a social stigma. With almost a million people UK wise having some form of dementia the governments should be treating it like other diseases. It impacts whole families and as usual it is up to charities to provide help and support.

I don’t want to include a picture yet and I would like to keep hold of my anonymity as well , as we need time to deal with this and view it as our life from now. Looking forward to more professional support.

Our dear Mum developed Lewey Body Dementia from gradual forgetfulness to distinct loss of physical ability and abilities to speak coherently. Due to her comfortable state at home we decided to base the care here and found a good Care Agency to arrange carers 3 times a day to assist her needs over the final months, I was able to stay at home to attend to Mum at all other times, the carers were terrific and really helped Mum’s final months more comfortable.
In our area we were fortunate in having the council pay the majority of her care costs whereas if we lived in the adjacent borough we would have had to pay all the care costs.
With the cases of Dementia getting larger it is time the government made the financial help general as the costs are considerable for a condition that is becoming a part of a larger proportion of people’s lives.
We are so grateful for the help of our local care agency for making our Mum’s final months so much more comfortable.

My mother at 88 is a diminished, confused, incontinent, immobile, shadow of her former self. She no longer recognises me and doesn’t engage with life. It is pitiful to see her and breaks my heart each time I visit. She smiles at me when I say I’m her daughter and touches my face. Sometimes she struggles to get a few words out but they don’t usually make any sense. She was diagnosed in 2019 officially, finally but we knew there was something wrong for at 10 years before. My father died in 2022 having cared for her for many years. He was offered no help. She needs help with everything and is cared for in a wonderful home with great staff. Their home has been sold to pay for everything. I’m shocked at how little follow up or help is available whether financial or just advice etc..

My husband’s dementia started in 2018. His outlook became irrational. His memory was going, causing more irritable behaviour. He would see things that did not actually happen. He had to be monitored 24/7 as he was unaware of what he was doing.
He is in a home now, it is upsetting not being able to care for him. Money is very worrying as our savings become depleted each month.
No one understands the grief that lays heavy in my heart as I visit my lost soulmate. Intelligent he could outwit anyone, skillful specialist engineer. Now an empty shell. He doesn’t know who I am. Friends tell me he is dead now, this is so hurtful. When I look at him I look past the shell he has become and refuse to accept he has gone forever. I look up to the man he once was and pray everyday that he is not suffering his awful fate.

My sister & I looked after our mum with Alzheimer Dementia until she died in February 2021. Olive was not the mum who had loved us unconditionally, raised us with our Dad in a loving home. She became this anxious, aggressive, restless old lady who we struggled to care for with on a daily basis. I also had a full time job in London & the daily care was left to my sister (who left her job), coming home in the evening to help with the care, then have a restless nights sleep whilst mum wandered & unpacked her bedroom to ‘go home’. We were exhausted, help & advice was non-existent, our GP was next to useless. Unless you have done this ‘job’, you can never fully understand the toll, physically & emotionally - we are in tears whilst writing this & could add so much more. We still carry those emotions today & probably always will but we remember the happy times as well. We did begin to consider care but would have lost the family home which we still lived in & do today. Following her death, I hit a mental & physical ‘wall’ in November 2021 having tried to put on a brave face & ‘carry on’, I was signed off work for 3 months to recover from the physical & mental toll the experience had taken on my health.

My husband has early onset Alzheimer’s disease. He was diagnosed 3 years ago after I noticed a change in his behaviour , forgetting where things went etc. He had always been the one who was the font of all knowledge and I saw things slipping away. Over time our world has slowly but surely, started to change.
We have had to give up our holiday home abroad because he can’t travel without getting over anxious. Even more important, we can’t travel to America to visit our son, his wife and our grandchildren and rely on them visiting us.
Lots of friends seem to struggle to be here for us and so we are largely left alone most of the time. It’s a lonely place , especially on bad days, when he wants only to sleep and block the world out.