Dementia Support Line
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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 Mum was diagnosed with Early Onset Alzheimer’s...
I was diagnosed with early onset of alzheimers in...
My Mam had vascular dementia.
Her behaviour at times was unpredictable.
Thankfully for all she deteriorated quite quickly before she passed away.
So we were spared...
My husband died of this alfull disease 17yrs ago..there was not much help as they didn't make it so much on news .so very little help...so glad to see it's more help...
Both my parents were diagnosed with Alzheimers in 2018. My Mum was late onset and died of it 2 years later. It was dreadful watching her decline from a smiling,...
I actually made contact with ReCognition health who conducted a DNA test which revealed I had APOE 3 & APEO 4 as mum mother and grandfather had both suffered fro...
My grandmother was diagnosed with frontal lobe...
Once I recognised that my wife was having problems remembering what had happened only days, hours ago and found counting difficult i asked her sister if she had see...
Thankfully, we did not have any challenges getting a diagnosis, the process was straight forward and carried out in a timely manner. My dear mum was diagnosed with...
My story with my Dad started in January 2019....
I lost my dad May 13th 2023. I watched my dad change...
I knew there was something wrong with my husband...
My Mum was diagnosed with Early Onset Alzheimer’s aged 54 in 2010. We had noticed Mums behaviour change 4 years prior to this but when she approached her GP, was told her symptoms were normal for someone going through the Menopause. It took a change of GP and GP surgery for her to be sent for a full MRI scan which then led to a diagnosis. This was truly devastating for my Mum and the family, she finally had the medication and help to support her. I want a world without families having to fight for a diagnosis, for GPs to truly listen to families and not ‘pass off’ symptoms of Dementia for things such as the Menopause.
Jenny
I was diagnosed with early onset of alzheimers in 2020 after 2 years of tests. Helping to fight this been on 4 research programs and helped develop cogno speak with Sitran sheffield. This lead to been on bbc live to show my story. The hardest part of the illness is the wait to confirm my diagnosis . 2 years of been proded and poked had more brain scans than I can remember. Been married for 24 years and have the best family ever 3 children and 2 grandchildren. Making memories and keeping fit helps me along with a good diet
Mark
My Mam had vascular dementia.
Her behaviour at times was unpredictable.
Thankfully for all she deteriorated quite quickly before she passed away.
So we were spared a lot of the sad things about this very cruel disease.
I have also worked for many years in the care home environment so have seen lots of different variations on the disease.
Love to all those currently living and dealing with this dreadful condition.
Her behaviour at times was unpredictable.
Thankfully for all she deteriorated quite quickly before she passed away.
So we were spared a lot of the sad things about this very cruel disease.
I have also worked for many years in the care home environment so have seen lots of different variations on the disease.
Love to all those currently living and dealing with this dreadful condition.
Elisabeth Baker
My husband died of this alfull disease 17yrs ago..there was not much help as they didn't make it so much on news .so very little help...so glad to see it's more help now..its such a sad thing to see.you loose them every day again and again.....thank you for trying to get more done ..kay
Kay
Both my parents were diagnosed with Alzheimers in 2018. My Mum was late onset and died of it 2 years later. It was dreadful watching her decline from a smiling, creative, generous person to a shell of her former self. My Dad had a totally different path with his dementia in that he knew who we were and could communicate his views and was pretty active until the end but again he was a shell of his former self but he knew what was happening to him and he got understandably frustrated by it. He died in 2022
In both cases we fought tooth and nail to get help from the doctor and so called Social Services. Everything was a challenge and it tore the family apart. There was very little real help out there. The most helpful people for us was Age UK even if it was just someone we could talk to about the situation. Luckily we were able to fight for them and could employ private carers ourselves. Those carers helped us in so many ways, I don't know what we would have done without them.
Dementia is a wicked disease for everyone involved.
In both cases we fought tooth and nail to get help from the doctor and so called Social Services. Everything was a challenge and it tore the family apart. There was very little real help out there. The most helpful people for us was Age UK even if it was just someone we could talk to about the situation. Luckily we were able to fight for them and could employ private carers ourselves. Those carers helped us in so many ways, I don't know what we would have done without them.
Dementia is a wicked disease for everyone involved.
Angela
I actually made contact with ReCognition health who conducted a DNA test which revealed I had APOE 3 & APEO 4 as mum mother and grandfather had both suffered fro Alzheimer’s. I was then offered a place on a drug trial. Have over the past 5 years trialed 4 different drugs, some of which might have been a placebo dose but one at least was the drug and is similar to the 2 being assessed by NICE. Mine has been halted because it is so similar to those being asssed but didn’t have such a high positive result.
Philip
My grandmother was diagnosed with frontal lobe dementia in 2019. She was, at that time, living independently in her own flat in an assisted living property. We struggled as a family to find support once the GP had diagnosed her and she ended up in a care home for 24hr care. We had tried to look after her ourselves as a family but could not be on hand 24hrs a day. She became a danger to herself due to wandering at all hours of the day and night and being brought back home by neighbours, the police and by paramedics. It was the latter who had spoken to us to make us realise that 24hr care would be better in keeping her safe. We found the most amazing care home, which not only gave her back some independence and quality of life but we was also able to accept the rapidly moving diagnosis and enjoy our time with her until she sadly passed away in 2022 aged 93. I nursed her during her final days and was there at her last breath as she was there at my first.
Michelle
Once I recognised that my wife was having problems remembering what had happened only days, hours ago and found counting difficult i asked her sister if she had see changes in her, making that first decision to get appointment with our GP is the hardest thing to do and telling your wife she was having memory problems was met with disbelief and anger towards myself and the GP. You are never prepared for the the hard times ahead and can feel isolated. Any one caring for someone with dementia needs all the help and advice you can get and never feel afraid to ask .
Trevor
Thankfully, we did not have any challenges getting a diagnosis, the process was straight forward and carried out in a timely manner. My dear mum was diagnosed with mixed dementia/alzheimers, she was initially referred to the memory clinic by her doctor. After having some psychology & memory tests, my mum then had a brain scan, which revealed that that she had vascular dementia/alzheimers. The diagnosis was a horrible shock, my mum's nickname at school was 'the girl with the photographic memory', she had a brilliant brain and worked for the NHS as a Nursing tutor. Throughout her nursing career my mum cared for many people affected by dementia.
The diagnosis was very important because, we finally had an answer, and understood why my mum was behaving the way she was, which was totally out of character, and other erratic changes in her behaviour. It was also important because we could look at the medication that was available and, plan for the help & support that my mum needed. The diagnoses was also important because it helped me to deal with the inevitable changes that would need to be made in mine and my mum's lives and, to be able to plan for the short, medium and long term regarding her care needs, and sort out her housing, finances, and my mum's safety regarding driving, taking medication ect.
The changes I would really like to see for people affected by dementia are:
-Early diagnosis for 'everybody' regardless of their postcode.
-Voluntary- Basic comprehensive training for 'Unpaid Carer's' (could be carried out online) such as lifting, dealing with challenging behaviour & incontinence, safety & danger in the home i.e Gas, Rugs, Obstructive Furniture, the possibility of your loved one wandering, how to better communicate with your loved one, ect
-Diploma level, trained carer's specialising in dementia care-to provide them with increased wages, good career opportunities, their help/support is very much needed for care in the home and in care/residential homes
-Many more admiral nurses, there aren't enough of them, they are a much needed &valued service.
-24/7 Admiral Nurse help line.
-Much more help & support after diagnosis, such as a ONE STOP BASE/SHOP, a CO-ORDINATED SERVICE, instead of having to navigate through numerous different Government agencies/departments, NHS, Dr's Surgery, Mental Health services, Social Services and the Local Authority, ect, having to deal with endless form filling & repetition, in an already devastating, extremely stressful, life changing diagnose and situation.
-Much more-'Financial support & help' with extremely high care costs, there needs to be a 'Regulatory Body' (if, there isn't already one), to safeguard the financial costs of care to the person with dementia and their loved ones in the home and in care/residential/nursing homes.
The diagnosis was very important because, we finally had an answer, and understood why my mum was behaving the way she was, which was totally out of character, and other erratic changes in her behaviour. It was also important because we could look at the medication that was available and, plan for the help & support that my mum needed. The diagnoses was also important because it helped me to deal with the inevitable changes that would need to be made in mine and my mum's lives and, to be able to plan for the short, medium and long term regarding her care needs, and sort out her housing, finances, and my mum's safety regarding driving, taking medication ect.
The changes I would really like to see for people affected by dementia are:
-Early diagnosis for 'everybody' regardless of their postcode.
-Voluntary- Basic comprehensive training for 'Unpaid Carer's' (could be carried out online) such as lifting, dealing with challenging behaviour & incontinence, safety & danger in the home i.e Gas, Rugs, Obstructive Furniture, the possibility of your loved one wandering, how to better communicate with your loved one, ect
-Diploma level, trained carer's specialising in dementia care-to provide them with increased wages, good career opportunities, their help/support is very much needed for care in the home and in care/residential homes
-Many more admiral nurses, there aren't enough of them, they are a much needed &valued service.
-24/7 Admiral Nurse help line.
-Much more help & support after diagnosis, such as a ONE STOP BASE/SHOP, a CO-ORDINATED SERVICE, instead of having to navigate through numerous different Government agencies/departments, NHS, Dr's Surgery, Mental Health services, Social Services and the Local Authority, ect, having to deal with endless form filling & repetition, in an already devastating, extremely stressful, life changing diagnose and situation.
-Much more-'Financial support & help' with extremely high care costs, there needs to be a 'Regulatory Body' (if, there isn't already one), to safeguard the financial costs of care to the person with dementia and their loved ones in the home and in care/residential/nursing homes.
Karen
My story with my Dad started in January 2019. Firstly, he crashed his car and then collapsed in the summer. I knew something was terribly wrong and had to fight to get a diagnosis of vascular dementia in the October. Every step of the way was difficult! It’s the hardest thing I have ever had to do but I was all he had, so I was his champion…
I fought tooth and nail for his care and cared for him myself until he had to go for an operation and never recovered. The fight didn’t end there as I had to fight for NHS funding, which nearly broke me. Finally, he lost his fight on the 29th July 2022 and was at peace at last. I felt that through the whole process he was regarded as a burden on society after a whole lifetime of paying taxes and being a decent human being. The system is so in just and unlike other cultures where they care for their elderly and value them. We have no care or understanding for how much experience and hard work they have contributed to society. I think we have a long way too go in fixing our social care system and there should be an easy pathway for Dementia sufferers as it’s such a cruel and vile disease to live with. My heart goes out to the many people who are on this journey and will be in the future.
I fought tooth and nail for his care and cared for him myself until he had to go for an operation and never recovered. The fight didn’t end there as I had to fight for NHS funding, which nearly broke me. Finally, he lost his fight on the 29th July 2022 and was at peace at last. I felt that through the whole process he was regarded as a burden on society after a whole lifetime of paying taxes and being a decent human being. The system is so in just and unlike other cultures where they care for their elderly and value them. We have no care or understanding for how much experience and hard work they have contributed to society. I think we have a long way too go in fixing our social care system and there should be an easy pathway for Dementia sufferers as it’s such a cruel and vile disease to live with. My heart goes out to the many people who are on this journey and will be in the future.
Emma
I lost my dad May 13th 2023. I watched my dad change slowly from being a strong, sociable man who kept himself very clean and tidy. He would always pay great attention to detail where his amazing head of hair was concerned. He became a shadow of his former self. He died a pitiful man and it breaks my heart to this day the cruel way he was taken from this world. Hospital and social services were a disgrace in looking after my dad. Thank goodness for the Care Home who gave dad amazing care.
I knew there was something wrong with my husband before 2008. His GP did not listen to me, so delaying referral to the Memory Service for five years even though I gave new evidence of unusual behaviour at every appointment.
After referral it took 18 months to progress through the system as appointments were three to six months apart. We received the diagnosis of Alzheimer’s in March 2015. The consultant gave us a prescription but no advice or referral to other agencies.
I eventually found a local Memory Cafe run by Alzheimer’sUK. They provided the support that I desperately needed. They told me about the financial help to apply for; Council Tax 25% reduction and Attendance Allowance. These moneys helped enormously so it is galling that by the unhelpful delays by the GP we were struggling financially.
I took my husband to meetings run by Alzheimer’sUK and AgeUK which helped keep him active and mentally stimulated. These were all cancelled in March 2020 due to Covid. After lockdown I was my husband’s sole carer 24/7 . He needed constant supervision even during the night so I was getting two or three hours sleep each night. I was so fatigued that I had falls that have left me severely disabled for the rest of my life. My husband died in July 2022.
I think it is vitally important that on diagnosis appropriate information about financial support, locally available groups, social services and national charities is provided immediately to support not only the newly diagnosed dementia patient but also their carer.
When carers are invited to group meetings a “crèche” for our beloveds is essential so we know they are safe and hopefully having fun (and maybe cake?).
After referral it took 18 months to progress through the system as appointments were three to six months apart. We received the diagnosis of Alzheimer’s in March 2015. The consultant gave us a prescription but no advice or referral to other agencies.
I eventually found a local Memory Cafe run by Alzheimer’sUK. They provided the support that I desperately needed. They told me about the financial help to apply for; Council Tax 25% reduction and Attendance Allowance. These moneys helped enormously so it is galling that by the unhelpful delays by the GP we were struggling financially.
I took my husband to meetings run by Alzheimer’sUK and AgeUK which helped keep him active and mentally stimulated. These were all cancelled in March 2020 due to Covid. After lockdown I was my husband’s sole carer 24/7 . He needed constant supervision even during the night so I was getting two or three hours sleep each night. I was so fatigued that I had falls that have left me severely disabled for the rest of my life. My husband died in July 2022.
I think it is vitally important that on diagnosis appropriate information about financial support, locally available groups, social services and national charities is provided immediately to support not only the newly diagnosed dementia patient but also their carer.
When carers are invited to group meetings a “crèche” for our beloveds is essential so we know they are safe and hopefully having fun (and maybe cake?).
Angela
Share your story
Help bring dementia out from behind closed doors and tell us, what is your reality of dementia?