Dementia Support Line
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Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?
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My mother was diagnosed with early onset dementia at the age of 62-she had been struggling with her memory for nearly a decade before her diagnosis. She has lost her...
My mum was around 50 when she began suffering from...
My mother, Maria was diagnosed with Alzheimers in...
Dementia has broken us as a family 💔 people on the...
My Gran passed away on May 22nd 2024, with family...
My mum passed away 3 years ago after being cared for in a dementia home. Now my brother who is 66 is waiting for a lumbar test to finally determine if he has the same...
My Husband has been diagnosed with Dementia, so far he is showing only very few signs of memory loss but I worry for him and for me. We would both like to get...
I was first Diagnosed with Alzheimer’s Dementia...
My wife was diagnosed with Alzheimers disease 3 years...
Mum was diagnosed with Alzheimer's in 2019 after a struggle to get a diagnosis. Doctors kept saying it was just old age. I have a very close relationship with my...
I am a carer 24/7
and a Jack of all trades
a nurse, a doctor,
a social worker,
a dietitian,
a pharmacist
working 75 hours
per week, unpaid.
My wife of 51 years was diagnosed with Lewy body dementia in 2021 and has been in a care home since mid2022. Herself, an NHS hospital pharmacist for 40years was in...
My mother was diagnosed with early onset dementia at the age of 62-she had been struggling with her memory for nearly a decade before her diagnosis. She has lost her independence, her job and any hope for a cure as she has progressed to the moderate stage of the disease. I work for the NHS, there is a gap in the number of neurologists/psychiatrists required to support the diagnosis of the disease and to also aid in the potential implementation of effective treatments. More funding is required to invest in clinical trials here in the UK. I know I am grieving for my mum -I am still trying to accept what is happening to her and I am afraid of the future. I have learned to enjoy the moments of happiness she has and I do my best to bring her comfort.
Carrie
My mum was around 50 when she began suffering from chronic constipation, fatigue, aches and pains, light headedness, palpitations,anxiety, nausea, night terrors and what she described as a fuzzy head feeling of confusion.
Mum retired at 69 and became physically slower. Her posture began to hunch and she had a slight tremor on her right side, she had an irregular heart beat and was given a pacemaker. Eventually at 75 years old she was diagnosed with Parkinson’s and put on medication. In 2019 she began hallucinating which was so distressing for her and the family. My daughter was studying psychology and had recently learned about Lewy bodies dementia, I had never heard of this so I looked it up and discovered that Lewy body dementia is an umbrella term for two different types of dementia: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).
Lewy body dementia is a progressive, challenging condition, which is thought to be the cause for 10-15% of people with dementia.
The symptoms that I mentioned at the beginning were very likely symptoms of the Parkinson’s disease dementia.
Mum has visual and auditory hallucinations, problems with understanding, thinking, memory and judgement along with the physical stiffness and pain of Parkinson’s. But her memory is fine and she is aware of what is happening to her body and mind. She gets frustrated when she loses the words she wants to say mid sentence, she gets embarrassed when she soils herself, she gets angry when she can’t turn the handle of her bedroom door, It’s a cruel disease.
Mum retired at 69 and became physically slower. Her posture began to hunch and she had a slight tremor on her right side, she had an irregular heart beat and was given a pacemaker. Eventually at 75 years old she was diagnosed with Parkinson’s and put on medication. In 2019 she began hallucinating which was so distressing for her and the family. My daughter was studying psychology and had recently learned about Lewy bodies dementia, I had never heard of this so I looked it up and discovered that Lewy body dementia is an umbrella term for two different types of dementia: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).
Lewy body dementia is a progressive, challenging condition, which is thought to be the cause for 10-15% of people with dementia.
The symptoms that I mentioned at the beginning were very likely symptoms of the Parkinson’s disease dementia.
Mum has visual and auditory hallucinations, problems with understanding, thinking, memory and judgement along with the physical stiffness and pain of Parkinson’s. But her memory is fine and she is aware of what is happening to her body and mind. She gets frustrated when she loses the words she wants to say mid sentence, she gets embarrassed when she soils herself, she gets angry when she can’t turn the handle of her bedroom door, It’s a cruel disease.
sonia
My mother, Maria was diagnosed with Alzheimers in 2021 but we saw signs and symptoms in 2017. We ignored it because refused to admit it and we all brushed it off as "oh she is getting old" but slowly yet quicker than we thought, it got progressively worst. It took a very long time to get a diagnose, back and forth with GP and with my mum (who refuses and is in denial still) to be seen. When we received the news, it shattered our world, our future plans and sadness clouded our family.
My mum who use to love english tea, working and meeting with her friends, was isolated completely because of this disease. Her personality and character changed and she is at times, unrecognisable. Like we are to her, we aren't her children, or her husband of 30 years.
We don't know what the future holds for her and for us all, we know one day we will have to put her in a care home, but until then, we are holding to the last threads of having her close with us and looking after her. We are thankful that there has been some help financially for my parents, but more needs to be done. The bills still need to be paid, food still needs to be brought and with this cost of living, it's closing in all of us.
I shared Maria's story on my personal social media.
https://www.tiktok.com/@neshie_xo/photo/7420041195260349728?is_from_webapp=1&sender_device=pc&web_id=7367361290052879905
My mum who use to love english tea, working and meeting with her friends, was isolated completely because of this disease. Her personality and character changed and she is at times, unrecognisable. Like we are to her, we aren't her children, or her husband of 30 years.
We don't know what the future holds for her and for us all, we know one day we will have to put her in a care home, but until then, we are holding to the last threads of having her close with us and looking after her. We are thankful that there has been some help financially for my parents, but more needs to be done. The bills still need to be paid, food still needs to be brought and with this cost of living, it's closing in all of us.
I shared Maria's story on my personal social media.
https://www.tiktok.com/@neshie_xo/photo/7420041195260349728?is_from_webapp=1&sender_device=pc&web_id=7367361290052879905
Ines
Dementia has broken us as a family 💔 people on the outside who have never dealt with this know what goes on behind close doors and how much of a horrible disease this really is 💔 stealing families every 3 mins everyday our papa/dad/husband/friend is a well known loved man kind loving man 💔 please find a curer if you can find something for covid you can find something for dementia/alzheimers 💔
Wee as family know how the other families affected are feeling because we get nothing no help no nothing this illness is very hard 💔💔
Wee as family know how the other families affected are feeling because we get nothing no help no nothing this illness is very hard 💔💔
Lucy
My Gran passed away on May 22nd 2024, with family surrounding her. She had Alzheimer’s for around 11/12 years but had an official diagnosis in 2016. Her own mum had Alzheimer’s and her big sister had Vascular Dementia. People think Alzheimer’s is just ‘forgetting’ but it’s so much more. My Gran forgot recipes she had did for years, patterns she knitted her whole life and eventually lost who she was as a person. She forgot family members and became frightened at night time (sun downing).
She stayed in as she lost her confidence, forgot how to do her makeup and hair and all the little things that made her Irene.
Trying to get home help was awful and when we did get them they weren’t kind to my Granpa. My gran was so advanced by the time they were organised that some carers made comments of ‘we will we stop coming!’ Which caused my Granpa distress.
We felt forgotten by the care system and then had to pay £250 for a doctor to say she had Alzheimer’s so the care home could accept her placement. She moved into a care home on the 27th of Feb this year and was in there 12 weeks where she gained friends, sang and danced. The care she received was utterly amazing! The process to get the care was an uphill battle.
She never lost her nature sharing sweeties and hugging us tight.
I just wish she didn’t have to face her biggest fear.
She stayed in as she lost her confidence, forgot how to do her makeup and hair and all the little things that made her Irene.
Trying to get home help was awful and when we did get them they weren’t kind to my Granpa. My gran was so advanced by the time they were organised that some carers made comments of ‘we will we stop coming!’ Which caused my Granpa distress.
We felt forgotten by the care system and then had to pay £250 for a doctor to say she had Alzheimer’s so the care home could accept her placement. She moved into a care home on the 27th of Feb this year and was in there 12 weeks where she gained friends, sang and danced. The care she received was utterly amazing! The process to get the care was an uphill battle.
She never lost her nature sharing sweeties and hugging us tight.
I just wish she didn’t have to face her biggest fear.
Susanne
My mum passed away 3 years ago after being cared for in a dementia home. Now my brother who is 66 is waiting for a lumbar test to finally determine if he has the same Alzheimer’s as Terry Pratchet had. The long wait for testing is a nightmare for those affected. It seems he has been relatively lucky to have already had some of the tests. People should not have to wait.
Helen
My Husband has been diagnosed with Dementia, so far he is showing only very few signs of memory loss but I worry for him and for me. We would both like to get involved with helping wherever we can. We enjoyed the programme very much and agree something should be there for All Dementia sufferers. It is absolutely essential. Christina
Christina
I was first Diagnosed with Alzheimer’s Dementia July 2023 I was put on medication 5 mg of Donepezil to start and after 3 months up the dose to 10mg and then told that this Diagnosis could take between 5 / 10 / 15 years before i forget everybody. I’ve come to terms with this But the most important thing is I’m not going to beat it but I’m going to fight it all the way and by doing that I’m keeping active I’ve read a lot of stories some are more intense than others I can only do what my body and memory will allow me So look out body and memory there’s a lot more to come .I hope I haven’t been too abrupt with this but I think if you switch off you will Stagnate
Regards Kevin
Regards Kevin
Kevin
My wife was diagnosed with Alzheimers disease 3 years ago at the age of 68. We both worked as teachers and hoped to spend the last 10 years enjoying our grandchildren and each other. Our planned future has radically changed. My wife has become a rapidly diminishing shadow of her former self. No one can appreciate the full scale of the loss. She never instigates conversation and now sleeps 18 hours a day. I take her to Singing for the Brain and she attends a day centre twice a week paid for out of our savings. Fortunately I have made some friends via these groups and we can go on short breaks in this country together where we can support each other. It’s very lonely although I think my wife is happy in her own world and never moans about her lot unlike me. I think it’s a savage disease unremitting in its relentless journey towards sapping the individual’s life force piece by piece. How the Government can keep putting social care for this disease on the back burner beats me. We promised to be together until death do us part but this is worse than death.
Robert
Mum was diagnosed with Alzheimer's in 2019 after a struggle to get a diagnosis. Doctors kept saying it was just old age. I have a very close relationship with my mum (I am an only child) and I knew that it was more than this. I can't describe what a devastating effect this disease has had on mum's life and the loved ones around her. I looked after mum in her own home (along with the help of family and friends) for 3 years. She went into respite in 2022 so that I could take a break. When she returned home she was very confused and she didn't know that the bungalow where she had lived for 17 years was her home. At this point it it became apparent that she could not live at home on her own and she went into care several weeks later. Although I knew that this was the right thing for mum it did not take away the guilt. Mum is now in the later stages of dementia and it if anything it is harder now than ever. I have been very lucky with what support I have had with mum but this should not be a Post Code lottery! Everybody should be able to access help and support and the right care. This is an horrific disease and the Government needs to step up. It is heartbreaking enough to watch a relative deteriorate and to lose a bit of that person everyday without the stress of having no help and support.
Sarah
I am a carer 24/7
and a Jack of all trades
a nurse, a doctor,
a social worker,
a dietitian,
a pharmacist
working 75 hours
per week, unpaid.
and a Jack of all trades
a nurse, a doctor,
a social worker,
a dietitian,
a pharmacist
working 75 hours
per week, unpaid.
Barry
My wife of 51 years was diagnosed with Lewy body dementia in 2021 and has been in a care home since mid2022. Herself, an NHS hospital pharmacist for 40years was in denial of any issues so together with COVID and patient confidentiality made getting a diagnosis very difficult.
The initial move into care was following advice from her psychiatrist at CMHT for my benefit (respite) as managing at home was 24 hours and becoming dangerous for both of us. I was advised by the care home manager that her dementia was very advanced and she should not be going home. This care home announced closure and my wife was moved to a nursing home within the same group where care was poor. I moved her again a few months later to a home with better care.
Managing DST meetings and appeals and the financial implications becomes a major challenge, everything is on-line and extremely stressful.
Since my wife went into care, I have become an active member of our local carers group trying to assist anyone with negotiating the extremely complex web of care. When my wife was at home, I didn’t have any time to talk to anyone or attend meetings which is a common problem. Her “extreme “ symptoms excluded her from dementia cafes etc and the whole experience took me to the lowest point of my life. I’m very grateful to family and friends who have helped me to recover .
Even after some years of experience, I’m still unsure how the system works from primary care, social services to care and care homes. Listening at our carers group, this is the common theme and at a time when your life is under great pressure supporting a loved one, where do you turn for help?
I’ve written to our local MP and to ministers outlining our story but also asking that the whole system of care is given the priority treatment it needs. I’ve had a couple of replies but it’s action we need not words.
The initial move into care was following advice from her psychiatrist at CMHT for my benefit (respite) as managing at home was 24 hours and becoming dangerous for both of us. I was advised by the care home manager that her dementia was very advanced and she should not be going home. This care home announced closure and my wife was moved to a nursing home within the same group where care was poor. I moved her again a few months later to a home with better care.
Managing DST meetings and appeals and the financial implications becomes a major challenge, everything is on-line and extremely stressful.
Since my wife went into care, I have become an active member of our local carers group trying to assist anyone with negotiating the extremely complex web of care. When my wife was at home, I didn’t have any time to talk to anyone or attend meetings which is a common problem. Her “extreme “ symptoms excluded her from dementia cafes etc and the whole experience took me to the lowest point of my life. I’m very grateful to family and friends who have helped me to recover .
Even after some years of experience, I’m still unsure how the system works from primary care, social services to care and care homes. Listening at our carers group, this is the common theme and at a time when your life is under great pressure supporting a loved one, where do you turn for help?
I’ve written to our local MP and to ministers outlining our story but also asking that the whole system of care is given the priority treatment it needs. I’ve had a couple of replies but it’s action we need not words.
Paul
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?