Dementia Support Line
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.
I was the sole carer for my wife for over 11 years. It was horrible to see she had no proper speech or knowledge of knowing anyone for the last 6 years .I did...
When mum had dementia her filter disappeared and she would be very judgemental about a variety of people which often was challenging when we were out and about. As...
I am the Full time Caregiver to my 82 year old mother...
There has to be a better way!
Imagine that instead of the upset and distressed caused to the person living with a diagnosis of a dementia and their carers, family,...
My Sharon was diagnosed with early onset of Alzheimer’s last January of 2023. We have tried different medications all have proven to be to toxic for her .August of...
My wife had the occasional loss of memory of past events. The experts told me the earlier dementia is diagnosed the earlier it can be slowed down or even stopped....
My mum has got Lewy body dementia, she was diagnosed during the first covid lock down.we looked after her at home for 2 years until she started leaving the house, it's...
My nan Audrey had dementia for many years, as a...
My dad lived with dementia in the last few years of...
My mum's mum had vascular dementia and passed away around 25 years ago, now my mum age 79, has also been diagnosed with it and it is such a different presentation to...
Sadly, my family has been ripped apart by Dementia....
Mum did a great job of caring for Dad who had cancer for years, he sadly passed away early Jan 21. Late 2020, we started to notice mum was asking the same question...
I was the sole carer for my wife for over 11 years. It was horrible to see she had no proper speech or knowledge of knowing anyone for the last 6 years .I did everything for her all day long.
Geoffrey
When mum had dementia her filter disappeared and she would be very judgemental about a variety of people which often was challenging when we were out and about. As much as I didn't want to label mum - I decided it was better to have the disability lanyard so that hopefully people would be more understanding.
There is a lack of support for Dementia patients and their carers and there is no joined up thinking. Sadly even the Memory Clinic got things wrong by phoning my mum to tell her about appointments when they were the ones who diagnosed how bad she was!
It is horrible to witness your loved one with this disease and see them wither away - my mum would have hated her life this past 4 years. Thankfully she was in a wonderful care home and was looked after brilliantly - at a substantial cost. That is one area that needs to be reviewed as it's not fair that all her life savings had to be used - when she had saved to give it to the grandchildren.
As an aside there are some funny bits of dementia that now I can laugh about - tissue balls everywhere, milk in the kettle, panty pads in pads in the fridge, the dressing gown being called Ruth (who we thought was a person in the cupboard!).
There is a lack of support for Dementia patients and their carers and there is no joined up thinking. Sadly even the Memory Clinic got things wrong by phoning my mum to tell her about appointments when they were the ones who diagnosed how bad she was!
It is horrible to witness your loved one with this disease and see them wither away - my mum would have hated her life this past 4 years. Thankfully she was in a wonderful care home and was looked after brilliantly - at a substantial cost. That is one area that needs to be reviewed as it's not fair that all her life savings had to be used - when she had saved to give it to the grandchildren.
As an aside there are some funny bits of dementia that now I can laugh about - tissue balls everywhere, milk in the kettle, panty pads in pads in the fridge, the dressing gown being called Ruth (who we thought was a person in the cupboard!).
Emma
I am the Full time Caregiver to my 82 year old mother who has Dementia I left my job when the pandemic hit to stay at home with my mum. My oldest sister helps greatly with bills, hm maintenance, groceries and checking my mums vitals, monitoring her meds and doctor visits. She also steps in to give me a break every now and then. The Bahamas Alzheimers Assoc. has been a great assistance with information to help me care for my mother. My mum can be challenging at times but we are happy she is still with us...🥰❤️💞🥰💝
Yvette
There has to be a better way!
Imagine that instead of the upset and distressed caused to the person living with a diagnosis of a dementia and their carers, family, and friends by the often harsh, and negligent disregard of their basic human needs we had well organised, compassionate, person and needs led services. One where people could get timely diagnoses, the information that they need to nurture and protect their wellbeing and to enhance their intention to care well for the person who is living with a dementia. The NHS is the largest employer in the land - it should be a beacon of accountable best practice in all care but especially in dementia care for everyone involved.
Imagine that instead of the upset and distressed caused to the person living with a diagnosis of a dementia and their carers, family, and friends by the often harsh, and negligent disregard of their basic human needs we had well organised, compassionate, person and needs led services. One where people could get timely diagnoses, the information that they need to nurture and protect their wellbeing and to enhance their intention to care well for the person who is living with a dementia. The NHS is the largest employer in the land - it should be a beacon of accountable best practice in all care but especially in dementia care for everyone involved.
Marion
My Sharon was diagnosed with early onset of Alzheimer’s last January of 2023. We have tried different medications all have proven to be to toxic for her .August of 2023 we started stem cells therapy. To date she has had 3 treatments .her cognitive decline has leveled off. She is more active and alert .Her short term memory has improved significantly. I am with her 24/7 I see the improvement she is having with this treatment. I’m very optimistic that this and future treatments will help her substantially. More people should check out this treatment. It’s working.
Robert
My wife had the occasional loss of memory of past events. The experts told me the earlier dementia is diagnosed the earlier it can be slowed down or even stopped. Total baloney! Had I know I was being told a pack of lies I would never have subjected my wife to the humiliation of answering questions she NEVER knew the answers too. If you tell a fox, often enough, it is a chicken, it will act like Now with an undeserved LABEL of dementia on her forehead, she is acting the part and believes she stupid. The process is flawed. Until the patient is no longer capable of everyday tasks KEEP AWAY for the medical profession. Early diagnosis is ineffectual and counter productive.
Chris
My mum has got Lewy body dementia, she was diagnosed during the first covid lock down.we looked after her at home for 2 years until she started leaving the house, it's hard for for me as I said I would always look after her ,she has been in residential care for 2 years,she doesn't know I'm her daughter which kills me ,I can't hold her when she cries ,I miss her everyday and it doesn't get any easier ,we were each other's shadows and lived in each other's pockets ,the smallest thing makes me cry ,I wish I could take it away from her and stop her pain ,but I can't, it's a horrible illness and so so cruel
L J
My nan Audrey had dementia for many years, as a family we struggled with carers and knowing how to help nan. During covid dad and myself became her daily carers, she didn't understand that the world had shut down. Sadly she passed away in Feb 2023 and I got a new job as marketing manager for a shopping centre. I didn't want another family to experience how we felt so with my new role I was able to set up a dementia hub for families in our community. It is the most successful hub in Herts and grows every month with new and regular guests attended. I'm so proud of the difference we make to every guest who visits the hub, the Alzheimer's Society ladies that help me host are amazing.
1st Wednesday of the month, 10am-12pm advice and support, 12pm-2pm socialise, play games etc @The Marlowes Shopping Centre, Hemel Hempstead.
1st Wednesday of the month, 10am-12pm advice and support, 12pm-2pm socialise, play games etc @The Marlowes Shopping Centre, Hemel Hempstead.
Vicki-Lea
My dad lived with dementia in the last few years of his life. Family and friends were all shocked at how quickly this illness escalated. Before this, I naively thought dementia was being forgetful and confused now and again. I had no idea of the exent of the associated paranoia and its devastating impact. My dad went from being a caring and intelligent family man to believing that we were all out to harm him. It must have been so frightening for him and it was heartbreaking for us to witness. I went through a mix of emotions of hurt, guilt and anger, but most of all I just wanted my dad back.
Jane
My mum's mum had vascular dementia and passed away around 25 years ago, now my mum age 79, has also been diagnosed with it and it is such a different presentation to nan's vascular dementia. It is very hard when it is your own mum as I know from working with the elderly. The role changes and relationship issues from way back come to the fore and it is very hard to help someone who is denying that there is a problem. It is also heart breaking losing the person you love as parts of them drop away. That is the hardest part, like you are grieving the person they were, even though they are still alive.
Louise
Sadly, my family has been ripped apart by Dementia.
My dad had a stroke in 2012 and since then went on to develop mixed vascular dementia. It took over 5 years for him to be diagnosed and by that point I had to give up my career in London and move home as a 26 year old to help my mum manage his care needs. We were completely ignored by social services and left to struggle for many years. It was the hardest years of our lives. My dad started developing symptoms in his late 50's and during this time we were completely abandoned.
After many hospital trips and a complete breakdown from myself and my mum, my dad was admitted to a care home. Less than a week later he was sectioned under the mental health act and admitted to a hospital over 2 hours away for the next year due to his complex care needs. We were broken.
Fast forward to now, dad is a different person. Of course his dementia has progressed and sadly he has lost most of his mobility but due to the medications he is on, he now has a significantly better quality of life. His mood is regulated and he is so much happier than he was. Being able to enjoy days out and feel happier and more settled in himself.
It's sad that he had to suffer for all those years before his mental well being was taken seriously. Those with dementia deserve to have a quality of life too and the fact that there are many people forced to live through this, when they could benefit from mood regulating medications to improve there lived experience, makes me really sad.
I've given up many years of my life to care for my dad and I still do care for him. I've stopped working for 2 years and have never been financially or emotionally supported by our government. I never see anything about the impact of caring for a loved one with dementia as a young person and it feels so isolating. I think we need to recognize the unique experience of those with an early onset and find ways to better support.
Having said all this, I don't regret putting my life on hold to care for my dad. Through doing so we've developed the closest bond and I've been able to make lifelong memories that i'll treasure forever. Picture is me running the London Marathon in 2022 for Alzheimer's Research. Dad was determined to come and see me and so made the journey (ON THE TUBE!) and stood waiting for over 2 hours. The hug he gave me i'll never forgot.
My dad had a stroke in 2012 and since then went on to develop mixed vascular dementia. It took over 5 years for him to be diagnosed and by that point I had to give up my career in London and move home as a 26 year old to help my mum manage his care needs. We were completely ignored by social services and left to struggle for many years. It was the hardest years of our lives. My dad started developing symptoms in his late 50's and during this time we were completely abandoned.
After many hospital trips and a complete breakdown from myself and my mum, my dad was admitted to a care home. Less than a week later he was sectioned under the mental health act and admitted to a hospital over 2 hours away for the next year due to his complex care needs. We were broken.
Fast forward to now, dad is a different person. Of course his dementia has progressed and sadly he has lost most of his mobility but due to the medications he is on, he now has a significantly better quality of life. His mood is regulated and he is so much happier than he was. Being able to enjoy days out and feel happier and more settled in himself.
It's sad that he had to suffer for all those years before his mental well being was taken seriously. Those with dementia deserve to have a quality of life too and the fact that there are many people forced to live through this, when they could benefit from mood regulating medications to improve there lived experience, makes me really sad.
I've given up many years of my life to care for my dad and I still do care for him. I've stopped working for 2 years and have never been financially or emotionally supported by our government. I never see anything about the impact of caring for a loved one with dementia as a young person and it feels so isolating. I think we need to recognize the unique experience of those with an early onset and find ways to better support.
Having said all this, I don't regret putting my life on hold to care for my dad. Through doing so we've developed the closest bond and I've been able to make lifelong memories that i'll treasure forever. Picture is me running the London Marathon in 2022 for Alzheimer's Research. Dad was determined to come and see me and so made the journey (ON THE TUBE!) and stood waiting for over 2 hours. The hug he gave me i'll never forgot.
Mum did a great job of caring for Dad who had cancer for years, he sadly passed away early Jan 21. Late 2020, we started to notice mum was asking the same question time and time again. After Dads death, she stopped being the bubbly person she was and started forgetting more. Mum had a stay in hospital after collapsing in June 22 an episode of “Delirium’. From then on, we fought to find out what’s was happening and eventually in Sept 2022 we got a diagnosis of Early Onset Alzheimer’s.
Mum didn’t and still is a little in denial and I guess this comes from the stigma that has previously been associated with Dementia. It makes it harder to deal with, although what we’ve found much harder to comprehend is close family and friends attitudes towards her and Alzheimer’s. I’ve had people verbally rip me apart, telling me that Mum needs specialist care and yet they haven’t seen her for YEARS! It’s their lack of education and understanding of Dementia/Alzheimer’s that really hit home. How can extended family members be so cruel?
Anyone who is a carer will know that the intention and information obtaining from the likes of GPs, social care and other supporting bodies is to keep people living in their own home as long as they can. So for me, I would like to see more campaigns aimed at educating people on what Dementia is, how to deal with it and as a bystander, to not show your ugly uneducated opinion. It hurts not only the family member suffering from this disease but also knocks down the carers doing the absolute best they can.
Mum didn’t and still is a little in denial and I guess this comes from the stigma that has previously been associated with Dementia. It makes it harder to deal with, although what we’ve found much harder to comprehend is close family and friends attitudes towards her and Alzheimer’s. I’ve had people verbally rip me apart, telling me that Mum needs specialist care and yet they haven’t seen her for YEARS! It’s their lack of education and understanding of Dementia/Alzheimer’s that really hit home. How can extended family members be so cruel?
Anyone who is a carer will know that the intention and information obtaining from the likes of GPs, social care and other supporting bodies is to keep people living in their own home as long as they can. So for me, I would like to see more campaigns aimed at educating people on what Dementia is, how to deal with it and as a bystander, to not show your ugly uneducated opinion. It hurts not only the family member suffering from this disease but also knocks down the carers doing the absolute best they can.
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?