Share your story
If you're ready to tell your story, we want your voice to be heard.
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
It will take society to beat dementia. We’ll take your stories to those who need to hear them most, to help make dementia the political priority it deserves to be.
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...
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...
Mom has Mixed Alzheimers & Vascular Dementia we knew...
Dementia has been a big part of my life for the last...
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...
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...
My husband was diagnosed with Alzheimer’s in July 2022 at a Memory Clinic, they prescribed Donepzil but there were no follow-up appointments or any help or advice...
AD creeps up slowly. I think I didn’t want to see it myself for quite a while but think I knew .
As a wife I could only deal with it slowly.
I use to feel a panic...
With my 3 sisters we looked after my mum with...
My name is Kim, I have been looking after my father who was diagnosed with Alzheimer’s disease two years ago.
It is so heartbreaking to see, the person you once...
My wife Kay was diagnosed in 2019 with Alzheimer's...
My dad was diagnosed with Alzheimer’s in 2016 when...
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.
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.
Lysbeth
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.
June
Mom has Mixed Alzheimers & Vascular Dementia we knew she had it way before the diagnosis but with the Pandemic & dad dying of terminal brain tumour glioblastoma cancer 30th Jan 2021 it took until Oct 2022 to get her diagnosed her head scan was March 2022 August phone call from Doc Memory clinic Oct 2022 confirmed our night mare, we were begining to think she had glio tumour like dad. Its true that when its a full moon mom looses the use of her leg and falls , she is becoming less mobile. We have her on antidepresents and Memantine 20mg. As eldest daughter its fallen to me to care for mom, we become their "everything" as I put it, letters bills,food shop, bed changer, clothes shopper , med nurse, chief cook & bottle washer, as they say, hygienest, hairdresser, gardener, nutrisienist , the list is endless, a care givers mental health suffers, as we watcher our loved one decline Cognative and physical mobility, its a big responsibily and our own health and family life marriage etc takes a back seat. Its time for #CHC given to every loved 1 ,2years after full diagnosis . Its not right the NHS does not care for them, paid care in home shouldn't be the case , Ive not grieved for Dad as from day 1 took over moms care. After 52 years of Marriage for Dad and mom to lose them both to their brains ,both terminal with no care for both disease this has it me hard. Mom & Dad were good parents didn't deserve to end life this way, me at 53 didn't expect to be where I am sunce the pandemic losung dad and caring for mom.
Lou
Dementia has been a big part of my life for the last 10 years as both my parents had it. My father had vascular dementia and my Mum had Alzheimer’s. It’s been a tough, long ride. My father died 5 years ago and my mother died in January. They both withered away, my Dads body gave out in the end 18 months in a care home bed withering away, not knowing who we were. My Mum found him dead one day, having died in his sleep. The next day she had forgotten he had died, as she did every day, I had to sit with her and tell her every morning and watch that grief again and again, till eventually she forgot to ask where he was. We stopped telling her he was dead in the end and just said ‘he was not here’. She spent 5 years in a care home. The last 6 months were horrific - she became feral in the end, like an animal - I would not wish that on anyone. Their dementia has cost us £450,000, all their savings and the value of their house. The government does nothing for dementia patients until you have less than £23,000 left and then you have to beg for help. When they had Prostrate Cancer and Breast Cancer it was easier, as the NHS kicked in for their treatment, but nothing for Dementia. I want to remember them before the dementia - fit and healthy, doing lots of long walks, travelling, not the people they became. I have nothing but admiration for the care homes and how they looked after my parents. I haven't been able to go back yet and properly thank them, I think I am dealing with 10 years of grief at the moment and I need to work out what my new "normal" looks like. Rest in peace Mum and Dad xx
Caroline
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.
Elaine
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.
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.
Lorraine
My husband was diagnosed with Alzheimer’s in July 2022 at a Memory Clinic, they prescribed Donepzil but there were no follow-up appointments or any help or advice offered other than a booklet. After asking for a review appointment 18 months later at the GP surgery I was referred to a Carers charity. The GP surgery only seem to offer help with medical conditions. I have, through my own resources found the Admiral Nurses, they have offered advice and places to contact for care (which we will have to pay for).
The impact on our retirement so early on has been devastating, we are not able to travel or enjoy cinema, theatre or museum visits or recently even going for long walks. My husband recently had a very bad seizure, which was very frightening, it would have been good to be aware this might happen.
I wish the Government took an interest in the all encompassing stress for both the individual and carer of people with dementia, it feels like such a lonely journey with no support or physical help.
The impact on our retirement so early on has been devastating, we are not able to travel or enjoy cinema, theatre or museum visits or recently even going for long walks. My husband recently had a very bad seizure, which was very frightening, it would have been good to be aware this might happen.
I wish the Government took an interest in the all encompassing stress for both the individual and carer of people with dementia, it feels like such a lonely journey with no support or physical help.
Sue
AD creeps up slowly. I think I didn’t want to see it myself for quite a while but think I knew .
As a wife I could only deal with it slowly.
I use to feel a panic inside when he did things that were odd but brushed it off as “just one of those days - we are both getting older? However my husband is 10 yrs my senior and now we know ( even though he forgets we have been told)
I try to take each day at a time and say yes to as many things as we can!
You get to know who can deal with it better in your friendships and be supportive and interested in you both still.
We belong to a supportive church - as we have been for all our married life and all are supportive plus some very close to us - this helps me so much..
As a wife I could only deal with it slowly.
I use to feel a panic inside when he did things that were odd but brushed it off as “just one of those days - we are both getting older? However my husband is 10 yrs my senior and now we know ( even though he forgets we have been told)
I try to take each day at a time and say yes to as many things as we can!
You get to know who can deal with it better in your friendships and be supportive and interested in you both still.
We belong to a supportive church - as we have been for all our married life and all are supportive plus some very close to us - this helps me so much..
Christine
With my 3 sisters we looked after my mum with dementia in her own home. Gradually she became less and less independent and we did more and more hours. We put everything we had into our mum, with adaptations and eventually paying for a regular OT to try and help to slow down the horrible disease. Early one morning amidst the Covid my mum fell, we had cameras set up around her house, watching her go down is something I will never forget.
Mum never came home and the decision of her going into a nursing home was taken away from us. Her home was sold to fund the nursing home where she now resides nearby.
It’s so hard finding her in her wheelchair with her head down when you visit and the longing look as you leave. Does she know who we are are? Sometimes yes sometimes just a familiar smile for the few kind words.
She lives on the floor with other dementia residents, we do consider ourselves lucky, she doesn’t cry out like some or have the aggression but she now has to live with these people who sadly cry and whale to go home. It’s all heartbreaking 💔
Mum never came home and the decision of her going into a nursing home was taken away from us. Her home was sold to fund the nursing home where she now resides nearby.
It’s so hard finding her in her wheelchair with her head down when you visit and the longing look as you leave. Does she know who we are are? Sometimes yes sometimes just a familiar smile for the few kind words.
She lives on the floor with other dementia residents, we do consider ourselves lucky, she doesn’t cry out like some or have the aggression but she now has to live with these people who sadly cry and whale to go home. It’s all heartbreaking 💔
Alison
My name is Kim, I have been looking after my father who was diagnosed with Alzheimer’s disease two years ago.
It is so heartbreaking to see, the person you once knew, turn into a person you no longer recognise. It’s very true what they say, you lose the person twice! We have to stay strong and never take anything they say to heart, it isn’t them anymore.
It is so heartbreaking to see, the person you once knew, turn into a person you no longer recognise. It’s very true what they say, you lose the person twice! We have to stay strong and never take anything they say to heart, it isn’t them anymore.
Kim
My wife Kay was diagnosed in 2019 with Alzheimer's Dementia right at the start of COVID-19; we left the hospital with Doctors' words stuck in our minds: a one-year prescription for medication and an appointment in one year—zero guidance; at this appointment, the Dementia had progressed, so it was now confirmed we were given a booklet and a report to follow, Thank goodness for the Internet, to cut the story short the guidance didn't come as I had to find it, fortunate I’ve managed to locate/discovery the correct Department’s within our local County Council for support, found support groups, then the local Council change the rules, plus the NHS change the way it operated I, e Introduced Primary Care, but they did not let us know. I have now joined up all the dots. We are on the way to putting our lives back together, albeit differently, with careers, and I’ve found a careers group locally. Our GP has still not contacted us regarding anything…… how are you?
This is very much WIP thankfully.
This is very much WIP thankfully.
David
My dad was diagnosed with Alzheimer’s in 2016 when he was 86 by a brain scan. He was put on medication that I believe held back this terrible disease until it took hold in 2020. Dad lived with mum who was not mobile so things were very difficult and I was run ragged caring for them both in between carers coming for mum. Dad did allow one carer to help him wash and dress but it was difficult. Dad went into care in June 2020 and gradually declined then passed away in January 2021. He still knew me at the end but covid restrictions although less strict stopped him seeing mum before he died. I was allowed in after tests at each visit. I always remember him getting upset that he couldn’t score at golf course anymore and stopped playing after 60 years as a great golfer. He got angry and upset and this disease affected us all . I pray for new breakthroughs in treatment. I feel for all families going through this.
Tracie
Tracie
Tracie
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?