Dementia Support Line
Share your diagnosis story
We want to show decision-makers across the UK the realities of seeking a dementia diagnosis.
Share yours or a loved one's diagnosis story today and we'll add it to our story wall.
Let's make dementia a priority.
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...
Mum was diagnosed 6 years before she died. She didn't get any help at all and in the latter stages we as a family really struggled to keep her quality of life as we...
We had a terrible time. It still distresses me to think about it. My Mum was on medication before she was diagnosed for Type 2 diabetes and for her underactive Thyroid...
Sadly my husband was a vert healthy fit man. Who went into hospital to have a shoulder replacement opp. In 2014 in the early hours ofthe same day the police picked...
My mother, incredibly creative, weird and wonderful, cognitive decline began subtly, forgetting small things and becoming more disoriented. Despite efforts by her GP...
My husband was diagnosed 7 years aged 52. Our lives...
My mum was diagnosed with Alzheimer's and vascular...
My Granda was diagnosed in 2017. However, that's basically where the information/assistance ended until the disease severely progressed. We were not advised what we...
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
Mum was diagnosed 6 years before she died. She didn't get any help at all and in the latter stages we as a family really struggled to keep her quality of life as we had hoped for her. Understanding of her needs and basic input was zero from the GP and community nurses. They failed her terribly and at the end I had to plead, scream and fight for essential meds to make her last days comfortable and dignified. Please prioritise dementia in the community and make sure end of life for dementia patients is carefully discussed with families.
Helen
We had a terrible time. It still distresses me to think about it. My Mum was on medication before she was diagnosed for Type 2 diabetes and for her underactive Thyroid and other things.
I am not sure at what stage she was diagnosed with vascular dementia but because she was not remembering to take her medication, the doctor kept prescribing her with higher doses. I live in Surrey and she lived in Lancashire. So it took me a while to understand what was happening and to sort it out with the doctor. Eventually we got a system where carers came to her house to make sure she took her medication and her prescription could be reduced.
I found a private carer to help her and be a friend to her during the day to be sure she dressed properly and ate properly. Mu enjoyed her company and when we (her sons and daughters) visited her we were able to enjoy our time together without worrying. We set up a Power of Attorney in the early stages when she still had capacity and it was reasonably easy because prior to being ill she trusted all of us.
However, my brother decided that what we had set up was not right and without prior discussion and some weeks further down the line when Mums capacity was worse, he took her to the same doctor who decreed that Mum had the capacity to change our arrangement, got her signature and revoked the one for us all (jointly and severally) and got her signature to sign the whole LPA over to him.
By the time we realised, the whole thing was set up and we had to go to the court of appeal. I found that the system of the whole court of appeal was broken. It was unable to protect my vulnerable mother from my brother making decisions for her that were in his best interest and not in my mothers.
This is a very short version of the whole sorry saga.
But our experience was that the social services had no authority, the Court of appeal was so slow and beaurocratic that it even lacked common sense and took to long to help her and the doctor was able to be manipulated and clearly to the rest of us, simply not assessing Mums capacity properly.
Her 3 other son and daughters had no authority to do anything. Mum did not get as good as she could have got as a result and would have been horrified at what was done.
My Mum was a social worker all her working life. She trusted the system to work for vulnerable people.
So I think doctors need a better system to be sure they diagnose appropriately for the whole care system to work properly in the care of elderly people with dementia.
I am not sure at what stage she was diagnosed with vascular dementia but because she was not remembering to take her medication, the doctor kept prescribing her with higher doses. I live in Surrey and she lived in Lancashire. So it took me a while to understand what was happening and to sort it out with the doctor. Eventually we got a system where carers came to her house to make sure she took her medication and her prescription could be reduced.
I found a private carer to help her and be a friend to her during the day to be sure she dressed properly and ate properly. Mu enjoyed her company and when we (her sons and daughters) visited her we were able to enjoy our time together without worrying. We set up a Power of Attorney in the early stages when she still had capacity and it was reasonably easy because prior to being ill she trusted all of us.
However, my brother decided that what we had set up was not right and without prior discussion and some weeks further down the line when Mums capacity was worse, he took her to the same doctor who decreed that Mum had the capacity to change our arrangement, got her signature and revoked the one for us all (jointly and severally) and got her signature to sign the whole LPA over to him.
By the time we realised, the whole thing was set up and we had to go to the court of appeal. I found that the system of the whole court of appeal was broken. It was unable to protect my vulnerable mother from my brother making decisions for her that were in his best interest and not in my mothers.
This is a very short version of the whole sorry saga.
But our experience was that the social services had no authority, the Court of appeal was so slow and beaurocratic that it even lacked common sense and took to long to help her and the doctor was able to be manipulated and clearly to the rest of us, simply not assessing Mums capacity properly.
Her 3 other son and daughters had no authority to do anything. Mum did not get as good as she could have got as a result and would have been horrified at what was done.
My Mum was a social worker all her working life. She trusted the system to work for vulnerable people.
So I think doctors need a better system to be sure they diagnose appropriately for the whole care system to work properly in the care of elderly people with dementia.
Carolyn
Sadly my husband was a vert healthy fit man. Who went into hospital to have a shoulder replacement opp. In 2014 in the early hours ofthe same day the police picked him up with his bag. They contacted me to ask what they should do. He was totally traumatised. This was dreadfull. After sometime it was obvious to me he could not retain much. We had our last holiday abroad in 2015. he happened to say please don't leave me. A very
Strange thing for him To say. He was feeling totally insecure and obviously
Scared. We got back home and had the test carried out at the hospital which
Frank found very humiliating and told me never to take him thier again.
Things got worse from then on he restrained me by the wrists. 1st ever time
He had done anything like this. He was admitted to a mental hospital and
After 3 months in hospital he lost all his communication skills. He was drug
Up with to the hills. He was just like a zombi, tragic. After 2 yes in hospital
Then went into a nursing home, I visited every day to help feed him. He
Did still know me. But if I had the choice I would have given him a pill and sat with him to close his eyes. But I was not able to do this for him.
Dementia is an terrible illness. Sadly love ones have go the same if not worse.They have to find a cure ASAP as more and more people are being diagnosed with this. With all the technology they are using..
Strange thing for him To say. He was feeling totally insecure and obviously
Scared. We got back home and had the test carried out at the hospital which
Frank found very humiliating and told me never to take him thier again.
Things got worse from then on he restrained me by the wrists. 1st ever time
He had done anything like this. He was admitted to a mental hospital and
After 3 months in hospital he lost all his communication skills. He was drug
Up with to the hills. He was just like a zombi, tragic. After 2 yes in hospital
Then went into a nursing home, I visited every day to help feed him. He
Did still know me. But if I had the choice I would have given him a pill and sat with him to close his eyes. But I was not able to do this for him.
Dementia is an terrible illness. Sadly love ones have go the same if not worse.They have to find a cure ASAP as more and more people are being diagnosed with this. With all the technology they are using..
Joyce
My mother, incredibly creative, weird and wonderful, cognitive decline began subtly, forgetting small things and becoming more disoriented. Despite efforts by her GP to secure her a proper diagnosis, initial hospital visits failed to investigate her symptoms.
Suddenly, she was screaming and never sleeping saying she was in pain so I moved in. Over the next few months, we would take her to A&E, but they found nothing wrong. I was completely drained, and I started having my own mental health issues.
The community mental health team came and diagnosed her with Alzheimer's after a brief chat. However, I was left to navigate a complex system on my own. When social workers discovered that she would be self-funded for her care, they pointed out that no care home would accept her in such a state, leaving me overwhelmed and unsure of where to turn for help.
I tried to keep my mother in her much-loved home and hired a live-in carer who quickly left due to the challenging nature of her behaviour. I moved back in and the screaming continued. Finally, a psychiatrist suggested that she needed the support of a Team in a care home. I did find a care home but she was terrified and miserable. After an incident where she put herself and other residents at risk. She spent time in a psychiatric ward, where it was informally acknowledged that she may be on the autistic spectrum, but it was too late for a diagnosis because of her dementia. Eventually, a great care home was found, yet her mental health issues still continue.
Her story highlights the urgent need for a more thorough and compassionate approach to dementia care, ensuring that individuals like her receive the support and dignity they deserve in their later years
Suddenly, she was screaming and never sleeping saying she was in pain so I moved in. Over the next few months, we would take her to A&E, but they found nothing wrong. I was completely drained, and I started having my own mental health issues.
The community mental health team came and diagnosed her with Alzheimer's after a brief chat. However, I was left to navigate a complex system on my own. When social workers discovered that she would be self-funded for her care, they pointed out that no care home would accept her in such a state, leaving me overwhelmed and unsure of where to turn for help.
I tried to keep my mother in her much-loved home and hired a live-in carer who quickly left due to the challenging nature of her behaviour. I moved back in and the screaming continued. Finally, a psychiatrist suggested that she needed the support of a Team in a care home. I did find a care home but she was terrified and miserable. After an incident where she put herself and other residents at risk. She spent time in a psychiatric ward, where it was informally acknowledged that she may be on the autistic spectrum, but it was too late for a diagnosis because of her dementia. Eventually, a great care home was found, yet her mental health issues still continue.
Her story highlights the urgent need for a more thorough and compassionate approach to dementia care, ensuring that individuals like her receive the support and dignity they deserve in their later years
Eli
My husband was diagnosed 7 years aged 52. Our lives changed, but our love for eachother didn't. As he progressed, he kept asking for help and no proffessional really took the time to help. He caused situations to get noticed and was sectioned. Our world broke that day. After, 5 months, he wasn't allowed home and instead he was put into a home. Recently he has had 2 seizures in 4 months and given a prognosis of 12-18 months. My heart breaks everyday, I miss him, he is my world. He doesn't like where he is and gets frustrated with everything. It's very heartbreaking being away from eachother.
Clare Mummery
My mum was diagnosed with Alzheimer's and vascular dementia when she was 78.
It didn't come as a shock as she had symptoms for years and it was only after a fall in her home and a stay in hospital that she eventually got a referral to a memory clinic. After her diagnosis I thought we would get some form of help as she lives on her own with help from myself and my sister.
Life was getting increasingly difficult which was complicated by my mum's alcohol addiction. I spoke to her GP about care but was told non was available. Then one night she drank a full bottle of whiskey and ended up back in hospital. It was only then that social services got involved and arranged in house care which was such a relief.
My mum, as I knew her, has gone but there are still sparks there. Her love of Elvis comes through when she sings along to his songs and she can still point out the place where my late father fished from at the local reservoir.
I feel that everything has been a struggle.
Since her diagnosis her GP hasn't even reviewed her once. If she had been diagnosed earlier then life could have been a lot different as I wouldn't have felt like everything was a fight on her behalf and perhaps she may have started treatment to slow the Alzheimer's, at diagnosis we were told it was pointless.
Having care, however, has enabled me to have a mother - son relationship again, which at her age is more precious than anything. Oh she hasn't had a drink for over 12 months now
It didn't come as a shock as she had symptoms for years and it was only after a fall in her home and a stay in hospital that she eventually got a referral to a memory clinic. After her diagnosis I thought we would get some form of help as she lives on her own with help from myself and my sister.
Life was getting increasingly difficult which was complicated by my mum's alcohol addiction. I spoke to her GP about care but was told non was available. Then one night she drank a full bottle of whiskey and ended up back in hospital. It was only then that social services got involved and arranged in house care which was such a relief.
My mum, as I knew her, has gone but there are still sparks there. Her love of Elvis comes through when she sings along to his songs and she can still point out the place where my late father fished from at the local reservoir.
I feel that everything has been a struggle.
Since her diagnosis her GP hasn't even reviewed her once. If she had been diagnosed earlier then life could have been a lot different as I wouldn't have felt like everything was a fight on her behalf and perhaps she may have started treatment to slow the Alzheimer's, at diagnosis we were told it was pointless.
Having care, however, has enabled me to have a mother - son relationship again, which at her age is more precious than anything. Oh she hasn't had a drink for over 12 months now
Carl
My Granda was diagnosed in 2017. However, that's basically where the information/assistance ended until the disease severely progressed. We were not advised what we were to expect in the future, what was out there to assist him or us as a family. All of our information was from our own research on the internet. When you hear dementia/alzheimers without the correct knowledge you just think memory loss, forgetfulness which is awful in itself but when you read this is a terminal condition, it doesn't fill you with much hope.
Reading the stages online and realising your loved one has progressed to the next stage is heartbreaking. More needs to be done to raise awareness and give families assistance. What medication can be used to help slow down the progression/reduce some of the awful behaviour changes which come wuth this disease. What assistance is out there to help the person diagnosed to get out and socialise or give their loved ones a bit respite.
For my Grandma she became my Granda's carer, but this meant she struggled to socialise as she was unable to leave him during the day to attend afternoon clubs where she used to socialise with friends as we were working so couldn't go and sit with my Granda. As a family we felt unsupported until the very end of his life but still even finally being assigned an adult social worker we still didn't know where to turn or what help was available.
Alzheimers is the cruelest disease in my eyes, as you lose the person you love twice, watching them change from what they were to the shell they become is truly heartbreaking but more needs to be done to aid the person with the diagnosis and their family. More awareness around early signs and early testing leading to an earlier diagnosis is vital. Most people just tie forgetfulness with old age not realising that's not always the case.
My greatest fear now in life is another loved one developing this disease, with cancer there is treatments, with physical disability their are aides to keep you mobile/active, but you still keep the person. With alzheimers it takes everything and all you can do is watch.
Reading the stages online and realising your loved one has progressed to the next stage is heartbreaking. More needs to be done to raise awareness and give families assistance. What medication can be used to help slow down the progression/reduce some of the awful behaviour changes which come wuth this disease. What assistance is out there to help the person diagnosed to get out and socialise or give their loved ones a bit respite.
For my Grandma she became my Granda's carer, but this meant she struggled to socialise as she was unable to leave him during the day to attend afternoon clubs where she used to socialise with friends as we were working so couldn't go and sit with my Granda. As a family we felt unsupported until the very end of his life but still even finally being assigned an adult social worker we still didn't know where to turn or what help was available.
Alzheimers is the cruelest disease in my eyes, as you lose the person you love twice, watching them change from what they were to the shell they become is truly heartbreaking but more needs to be done to aid the person with the diagnosis and their family. More awareness around early signs and early testing leading to an earlier diagnosis is vital. Most people just tie forgetfulness with old age not realising that's not always the case.
My greatest fear now in life is another loved one developing this disease, with cancer there is treatments, with physical disability their are aides to keep you mobile/active, but you still keep the person. With alzheimers it takes everything and all you can do is watch.
Chloe
Share your diagnosis story
Share your diagnosis experiences with us, so we can show decision makers the realities and issues people are facing.