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My wife Sarah, 58 started having memory issues mid year 2023, that i noticed, her memory started playing tricks on her, she believed Google was a person and was...
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My Dad got his formal diagnosis in August 2020.
I...
![](/sites/default/files/styles/user_story_mobile/public/webform/user_stories/IMG_20230117_130937.jpg?itok=ijMKweH_)
My mum, Marjorie was diagnosed with Alzheimers in...
My Father's assessment took place during covid. The process from the first visit to the Dementia Assessment Team to diagnosis took 14 months.
We wanted a diagnosis so...
My wife got a diagnosis in 2016 she was 62
The biggest challenge was because she had MS the doctors thought her symptoms were because of the MS
After her diagnosis...
i cant tell you my story in 250 words.... it starts around 2014 and perhaps earlier, i could write a book on my experience alone as a carer to my wife... never mind...
I am very lucky to have a GP who sent me for a brain scan very quickly and then to a consultant as soon as we had the results but I know that not everyone is that...
![](/sites/default/files/styles/user_story_mobile/public/webform/user_stories/Screenshot_20240516_133445_Photos.jpg?itok=3cGFAAaz)
My beautiful mum whom I sadly lost to dementia and...
With my dad we had very quickly a clear and precise diagnosis - because it was hereditary my mom, who was with him at the time, was advised that other blood relatives...
Together with my dad, I cared for my mum for 6 years...
Hello, my story is about my husband who sadly passed away 18 months ago from Alzheimer’s. 8 years ago I noticed small changes in John, a bit forgetful, mis...
Mum was diagnosed with vascular dementia in 2015. For much of the early years they were both somewhat ‘in denial’. They had very little support from the dementia...
My wife Sarah, 58 started having memory issues mid year 2023, that i noticed, her memory started playing tricks on her, she believed Google was a person and was talking to her through her phone.
Sarah came to me serveral times telling me Google was coming to our home to pick her up and take her shopping, to job interviews, she was at that point working as a care assistant, moving on the Christmas day evening 2023 we had a great day at our daughters, Sarah was chatting with our son in laws parents and playing games with our 5 year old grand son, on the way home something in Sarah just clicked and she became a different person.
Her mood changed she became very agitated and was hard to reason with.
January 5th Sarah was hospitalised under section to of the mental health act, she spent from the 5th jan to the 19th of jan on the neuro ward at Addenbrookes hospital.
19th of jan 2023 Sarah was transfered to Fulbourne Mulberry 2 where she spent the next 4 months, she had numerous tests done all coming back negative the Drs were all at a loss as to what was going on with Sarah, she was hearing voices and replying to these voices, she believed people were watching her she kept to windows and looking for people, and she was talking to these people and calling them by name.
The Drs at Mulbery said there was nothing else they could do for Sarah so started arranging weekends back home, then one final test result came back and it was positive for AD, my world just fell apart, Dr Cope broke the news to us at Mulbery, Sarah didnt react it was like she had not taken it in.
Its mid May now and Sarah has been home full time about 3 1/2 weeks, Sarah has okay days and bad days, Sarah still talks to the voices and still replies to them, today 20th May most of the day Sarah has continually sat in the living room and then got up and gone to the front door believing someone called donna was at the door.
Some days Sarah seems good today has been a bad day, i can not even begin to imagine what is going on in Sarah's head and it is extremely hard not to break down infront of her, i dread to think what the future for me holds with Sarah, and i dread to think what is going to become of Sarah in time, its heartbreaking now im not looking forward to what is coming.
Sarah came to me serveral times telling me Google was coming to our home to pick her up and take her shopping, to job interviews, she was at that point working as a care assistant, moving on the Christmas day evening 2023 we had a great day at our daughters, Sarah was chatting with our son in laws parents and playing games with our 5 year old grand son, on the way home something in Sarah just clicked and she became a different person.
Her mood changed she became very agitated and was hard to reason with.
January 5th Sarah was hospitalised under section to of the mental health act, she spent from the 5th jan to the 19th of jan on the neuro ward at Addenbrookes hospital.
19th of jan 2023 Sarah was transfered to Fulbourne Mulberry 2 where she spent the next 4 months, she had numerous tests done all coming back negative the Drs were all at a loss as to what was going on with Sarah, she was hearing voices and replying to these voices, she believed people were watching her she kept to windows and looking for people, and she was talking to these people and calling them by name.
The Drs at Mulbery said there was nothing else they could do for Sarah so started arranging weekends back home, then one final test result came back and it was positive for AD, my world just fell apart, Dr Cope broke the news to us at Mulbery, Sarah didnt react it was like she had not taken it in.
Its mid May now and Sarah has been home full time about 3 1/2 weeks, Sarah has okay days and bad days, Sarah still talks to the voices and still replies to them, today 20th May most of the day Sarah has continually sat in the living room and then got up and gone to the front door believing someone called donna was at the door.
Some days Sarah seems good today has been a bad day, i can not even begin to imagine what is going on in Sarah's head and it is extremely hard not to break down infront of her, i dread to think what the future for me holds with Sarah, and i dread to think what is going to become of Sarah in time, its heartbreaking now im not looking forward to what is coming.
Paul
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My Dad got his formal diagnosis in August 2020.
I had taken him to his GP a few times in late 2019 as both myself & my Mum knew he wasn’t right. My Dad himself knew there was something wrong, he was frightened as couldn’t understand why some of the simplest tasks he could no longer remember how to do them. It took 3 visits to the GP with him plus numerous calls from me chasing it up to finally get the referral to a memory clinic . It took several phone calls chasing up the memory clinic for the diagnosis as we were struggling to get extra care to look after him, as we needed that formal diagnosis.
When we finally got the diagnosis it was heart breaking, we were already witnessing Dad disappearing, he went from a happy , very social able , joke telling person to a withdrawn person, who was frightened of any strange noises & hardly spoke.
I would like to see families and people with dementia get the help & support quicker and for the person with dementia to be treated with respect & dignity. I would like to see a campaign to teach everyone how to respond to a person with dementia when they are out & about and not to stare or ridicule them.
I had taken him to his GP a few times in late 2019 as both myself & my Mum knew he wasn’t right. My Dad himself knew there was something wrong, he was frightened as couldn’t understand why some of the simplest tasks he could no longer remember how to do them. It took 3 visits to the GP with him plus numerous calls from me chasing it up to finally get the referral to a memory clinic . It took several phone calls chasing up the memory clinic for the diagnosis as we were struggling to get extra care to look after him, as we needed that formal diagnosis.
When we finally got the diagnosis it was heart breaking, we were already witnessing Dad disappearing, he went from a happy , very social able , joke telling person to a withdrawn person, who was frightened of any strange noises & hardly spoke.
I would like to see families and people with dementia get the help & support quicker and for the person with dementia to be treated with respect & dignity. I would like to see a campaign to teach everyone how to respond to a person with dementia when they are out & about and not to stare or ridicule them.
Karen
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My mum, Marjorie was diagnosed with Alzheimers in January 2017 but showed earlier signs of memory loss and anxiety when my step father informed my brother and l of this in July 2011.
They did not ask for our help and lived 375 miles away from us so did not notice mums decline other than when speaking on the phone fortnightly.
In March 2017, mums husband was in hospital for three weeks with heart problems and sadly died after open heart surgery. I think trying to care for mum's needs on his own had seriously stressed him out.
During that time, mum was placed in a care home and then after my step dad's funeral decided to have mum live with my husband and l. It was then that we realised how difficult it was to cope with a person with a mental disability.
I tried day care and respite in a local care home but was unsettling for mum and change of routine.
In November 2018, l had to place mum in a care home near where she used to live, full time. It was heartbreaking and felt so guilty that l couldn't look after her anymore.
Early diagnosis is important but it's not easy for someone like my mum who was in denial about the illness and just put it down to getting older.
Mum passed away in January 2022 at the care home. She refused the vaccines for covid so caught it and got pneumonia. Mum was 85 years of age.
They did not ask for our help and lived 375 miles away from us so did not notice mums decline other than when speaking on the phone fortnightly.
In March 2017, mums husband was in hospital for three weeks with heart problems and sadly died after open heart surgery. I think trying to care for mum's needs on his own had seriously stressed him out.
During that time, mum was placed in a care home and then after my step dad's funeral decided to have mum live with my husband and l. It was then that we realised how difficult it was to cope with a person with a mental disability.
I tried day care and respite in a local care home but was unsettling for mum and change of routine.
In November 2018, l had to place mum in a care home near where she used to live, full time. It was heartbreaking and felt so guilty that l couldn't look after her anymore.
Early diagnosis is important but it's not easy for someone like my mum who was in denial about the illness and just put it down to getting older.
Mum passed away in January 2022 at the care home. She refused the vaccines for covid so caught it and got pneumonia. Mum was 85 years of age.
Deborah
My Father's assessment took place during covid. The process from the first visit to the Dementia Assessment Team to diagnosis took 14 months.
We wanted a diagnosis so that we could access support but sadly following a diagnosis of Lewy Body Dementia we were discharged from the care of the Dementia Team and left to our own devices to access Adult Services to get the equipment and adaptations in the home my Father needed, and to source care for him.
We really felt abandoned, such a very different situation from when my mother had cancer. Fortunately I am a retired nurse and midwife so had insight and knowledge into accessing services. There needs to be good support and care after diagnosis, talking to other families I am aware that our situation is not uncommon.
We wanted a diagnosis so that we could access support but sadly following a diagnosis of Lewy Body Dementia we were discharged from the care of the Dementia Team and left to our own devices to access Adult Services to get the equipment and adaptations in the home my Father needed, and to source care for him.
We really felt abandoned, such a very different situation from when my mother had cancer. Fortunately I am a retired nurse and midwife so had insight and knowledge into accessing services. There needs to be good support and care after diagnosis, talking to other families I am aware that our situation is not uncommon.
Jane
My wife got a diagnosis in 2016 she was 62
The biggest challenge was because she had MS the doctors thought her symptoms were because of the MS
After her diagnosis we saw a doctor once and the dementia nurse once and they said because of her other conditions there was nothing to done
When she became ill and was admitted to hospital the nurses on the ward admitted they did not know how to act when she showed signs of her dementia
She passed away in 2018
The simple facts are that there is no support in most case after a diagnosis and families are left to deal with alone
The biggest challenge was because she had MS the doctors thought her symptoms were because of the MS
After her diagnosis we saw a doctor once and the dementia nurse once and they said because of her other conditions there was nothing to done
When she became ill and was admitted to hospital the nurses on the ward admitted they did not know how to act when she showed signs of her dementia
She passed away in 2018
The simple facts are that there is no support in most case after a diagnosis and families are left to deal with alone
Andrew
i cant tell you my story in 250 words.... it starts around 2014 and perhaps earlier, i could write a book on my experience alone as a carer to my wife... never mind...
Edward
I am very lucky to have a GP who sent me for a brain scan very quickly and then to a consultant as soon as we had the results but I know that not everyone is that lucky It was very reassuring to get the help that we needed and helped with coming to terms with a dementia diagnosis
I think that everyone deserves the same level of care and should get it automatically
I think that everyone deserves the same level of care and should get it automatically
Kenneth
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My beautiful mum whom I sadly lost to dementia and COPD on 22/02/2024 is who's story I would love to share.
About 9 years ago things started to change with the kindest most beautiful souled person became argumentative. She started disliking people. Would tell us stories that made no sense. Cooked dad the same dinner over and over again. The changes were slow but there were so many. We took mum she had a memory test passed with flying colours. I told mum well if there is nothing wrong I'm not sure I actually like the person you are becoming no idea why you are changing but if there is no reason I will not be nice to you when you are so unkind to me (naturally I was always nice to here but just could not understand why my beautifully natured mum was being so unkind at times).Minutes turned into hours that turned into weeks that turned into years mum got worse and worse we carried on as we could with her decline as there was nothing wrong so we were told. Mum had a massive fall smashed her face a few months later mum had another fall on Christmas eve she broke her arm but had such bad breathing a op was not possible. Sadly after this fall mum put herself to bed and would not walk as she was so scared of falling. We got careers into help dad lived with mum and roles were totally reversed he became totally dectated to looking after mum. Mum would see things that were not there. She would blame dad for doing terrible things that were not true. She refused medication life was hell. Got another assessment team in mum yet again passed a memory test but how. Again we carried on the story mum would tell you at times were funny but also heart breaking . Mum kept getting urine infection as eating and drinking were are nightmare she would refuse as she said she had already eaten or had not stopped drinking. Again I got someone in for her to be assed and she finally got the diagnosis of dementia. We were sad but in a way pleased as we had a label for mums behavior and now maybe some help. How wrong could we be the label was given and that was it the door was shut and we were left to get on with it. Phone calls in the night mum being abusive to dad my poor dad not being able to cope. Then covid came mum refused vacations she said she had lived through this diseases before she did not need jabs. Mums urine infection got worse which made the dementia worse. After another visit to hospital a lovely doctor advised me best place for mum would be to go into care she needed 24 hour help. We found a home which we thought was good but because of covid we could not go in. Well this place was pure hell when covid rules were lifted they were still trying to stop people seeing there loved ones. I battled to get my mum out of this place nearly having a breakdown in the process. Thankgod I stuck with my gut and got my mum from hell into pure heaven. Mum spent her last 19 months of her life being treated like a queen by the most beautiful care home ever. We never got a name for mums dementia she always knew who we were and if you were not told she had dementia you would never know it. Her stories were unreal and everyone believed what ever she said. One of the best things I have ever been told is if you meet someone with dementia you have only ever meet one person with that type of dementia and that's so true. Mum and dad worked so hard all there life every penny they made went on mums care dad now lives on the bread line scared to put his heating on. life can be so cruel this illness is wicked and has literally empacted on our life forever. My beautiful mums life ended a few months ago I am so proud of her and fought so hard for her. There needs to be more help I worry for people who do not have the support my beautiful mum had. This our story cut a short as I can . But while living with dementia my mum whom was a poet got her last dream to come true and her amazing care home got her pottery book published and with mum we got to meet The King and Queen which was literally a year before mum passed . So there can be some rainbows in within the clouds.
About 9 years ago things started to change with the kindest most beautiful souled person became argumentative. She started disliking people. Would tell us stories that made no sense. Cooked dad the same dinner over and over again. The changes were slow but there were so many. We took mum she had a memory test passed with flying colours. I told mum well if there is nothing wrong I'm not sure I actually like the person you are becoming no idea why you are changing but if there is no reason I will not be nice to you when you are so unkind to me (naturally I was always nice to here but just could not understand why my beautifully natured mum was being so unkind at times).Minutes turned into hours that turned into weeks that turned into years mum got worse and worse we carried on as we could with her decline as there was nothing wrong so we were told. Mum had a massive fall smashed her face a few months later mum had another fall on Christmas eve she broke her arm but had such bad breathing a op was not possible. Sadly after this fall mum put herself to bed and would not walk as she was so scared of falling. We got careers into help dad lived with mum and roles were totally reversed he became totally dectated to looking after mum. Mum would see things that were not there. She would blame dad for doing terrible things that were not true. She refused medication life was hell. Got another assessment team in mum yet again passed a memory test but how. Again we carried on the story mum would tell you at times were funny but also heart breaking . Mum kept getting urine infection as eating and drinking were are nightmare she would refuse as she said she had already eaten or had not stopped drinking. Again I got someone in for her to be assed and she finally got the diagnosis of dementia. We were sad but in a way pleased as we had a label for mums behavior and now maybe some help. How wrong could we be the label was given and that was it the door was shut and we were left to get on with it. Phone calls in the night mum being abusive to dad my poor dad not being able to cope. Then covid came mum refused vacations she said she had lived through this diseases before she did not need jabs. Mums urine infection got worse which made the dementia worse. After another visit to hospital a lovely doctor advised me best place for mum would be to go into care she needed 24 hour help. We found a home which we thought was good but because of covid we could not go in. Well this place was pure hell when covid rules were lifted they were still trying to stop people seeing there loved ones. I battled to get my mum out of this place nearly having a breakdown in the process. Thankgod I stuck with my gut and got my mum from hell into pure heaven. Mum spent her last 19 months of her life being treated like a queen by the most beautiful care home ever. We never got a name for mums dementia she always knew who we were and if you were not told she had dementia you would never know it. Her stories were unreal and everyone believed what ever she said. One of the best things I have ever been told is if you meet someone with dementia you have only ever meet one person with that type of dementia and that's so true. Mum and dad worked so hard all there life every penny they made went on mums care dad now lives on the bread line scared to put his heating on. life can be so cruel this illness is wicked and has literally empacted on our life forever. My beautiful mums life ended a few months ago I am so proud of her and fought so hard for her. There needs to be more help I worry for people who do not have the support my beautiful mum had. This our story cut a short as I can . But while living with dementia my mum whom was a poet got her last dream to come true and her amazing care home got her pottery book published and with mum we got to meet The King and Queen which was literally a year before mum passed . So there can be some rainbows in within the clouds.
Sally
With my dad we had very quickly a clear and precise diagnosis - because it was hereditary my mom, who was with him at the time, was advised that other blood relatives might want to be tested. I have two cousins on my dad's side who both chose to be tested (and were negative). I decided not to be (no children and none intended!) and although I saw my dad's neuro consultant several times he never asked me if I'd thought about it.
With my mom, she kept getting urine infections and delirium. Initially, I panicked but was reassured it would wear off as the infection cleared. It did but then the next time it lasted longer, and the next... One consultant did say that very frequent delirium often did seem to lead to dementia (and I now know some research at Newcastle University. has backed that up) but they still insisted it was 'just' delirium, until one day I found some of her hospital notes with a consultant neurologist saying "She is also recorded as having a diagnosis of Dementia' although I'd never been told.
With my mom, she kept getting urine infections and delirium. Initially, I panicked but was reassured it would wear off as the infection cleared. It did but then the next time it lasted longer, and the next... One consultant did say that very frequent delirium often did seem to lead to dementia (and I now know some research at Newcastle University. has backed that up) but they still insisted it was 'just' delirium, until one day I found some of her hospital notes with a consultant neurologist saying "She is also recorded as having a diagnosis of Dementia' although I'd never been told.
John
Together with my dad, I cared for my mum for 6 years when she was diagnosed with vascular dementia. As immediate family we had no knowledge or experience of dementia and didn't feel as if there was anywhere to turn. We noticed behavioural changes in mum that were out of character, followed by memory loss issues and anxiety. Getting a diagnosis was important to understand how to manage the symptoms and better deal with our own emotions as carers. Me and my dad were on a steep learning curve facing different challenges every day. At diagnosis, I felt I had more questions than answers but no one to ask and when the dementia started to progress practical help didn't seem available. Diagnosis should open the gate to support for the person living with dementia and their carers but in reality dementia care is crisis managed. I would like to see a much quicker route to diagnosis, rather than a 12 month waiting time. I would like to see that experts are on hand to support and advise people living with dementia and their carers so they are not managing in isolation. I would like to see dementia being given the same credibility as other terminal illnesses with the empathy and dignity people deserve. When my mother died, 3 months later I joined a charity who support people affected by dementia so others don't have to experience the feelings of isolation I did and have someone to turn to when they really need it. Dementia is now this country's biggest health crisis and we need to take action now!
Helen
Hello, my story is about my husband who sadly passed away 18 months ago from Alzheimer’s. 8 years ago I noticed small changes in John, a bit forgetful, mis pronouncing words,saying he didn’t know what a Lasagne was, asking me to choose his food when eating out.He has family history of dementia, mother and both grandmothers.We went to the GP who did the usual test,name,date of birth. What year it is,PM etc.Doctor put it down to “ his age” I disagreed had known John all my life.He asked what I wanted and after some discussion got memory clinic appointment ( eventually) John scored 75. Next appointment 6 months later, score down significantly. MRI scan etc, inconclusive as he didn’t remain in the machine long enough.Diagnosed Mild cognitive impairment.Months later due to a further change in his behaviour appointment with consultant who then diagnosed Alzheimer’s. On a Cruise a month later wouldn’t get off the ship. I was woken early hours of one morning by a knock on the cabin door,Johnhad got up for the toilet and gone out into the corridor and was luckily.y spotted by the man in the cabin next door. After the Cruise we stayed in a Hotel for a few days and had to put a chair against the door to prevent John from any more wandering. Things put into place, Admiral Nurse, memory team but the jewel in the crown was The RAF Benevolent Fund that provided 12 sessions of counselling for me, a telephone buddy and outings for John to a local RAFA meeting for him and any of his old forces buddies. Covid hit. That was it, all support by phone,with very little advise. Admiral Nurse told me to keep a diary of what triggered Johns nowincreasing out bursts of violent tempers usually brought on by me not wanting to watch certain programs on TV. He locked me in the conservatory,threw bedding and close down stairs and told me to stay there,threatened to throw me down stairs,left bruises on me and threatened me with a knife. Once restrictions were lifted the Admiral Nurse came 3 times,hardly talked about John,read my diary and said in future call the Police with violent episodes.She closed to me shortly after this visit.2021 friends took us out for lunch and John seemed to be more insecure,when we got home he was rambling and worrying what we could do for the rest of the day. I rang my daughter who rang 111 they suggested A&E. once seen by a Doctor was suggested he might have the start of a water infection,bloods etc taken and sent home with Anti biotics, next day behaviour changed again and son took him back to A&E after more tests and discussion with my son they decided to keep him in.There was no specialist Nurse to care for him ,he became more confused and was wandering.Sometimes a Security member of staff would keep an eye on him and one time the Hospital Librarian “minded” him.He managed to leave the Hospital and the grounds and try to make his way home. Luckily a Nurse going off duty spotted him and rang the Police who returned him to the Hospital. A meeting was held with my son and daughter in law and it was decided that he would not return home for safety reasons would need a Care Home. A choice of 3 given with travelling distances ranging from 40 miles to 85 miles. Transferred to his new abode and we were told to give him a couple of weeks to settle in before we visited.Lock down on the home due to Covid outbreak,didn’t get to see him for over a month.He had latched on to a Nurse who he followed around,was angry when he saw me and my son. He had tried to get out of the place on many occasions and had to be diverted after each of our visits.We. Complained many times about clothing and personnel items that went missing, all to no avail during the year he was there,he appeared on many occasions to be unkempt,not shaved,dirty clothes his bare feet shiney black. We were told that John was non compliant and there was nothing they could do. He became ill and they asked my son to go in and take him to Hospital,son was on holiday so sent him unescorted in an ambulance.He stayed at the Hospital 24 hours until the Hospital could provide him with an escort. Result from the Hospital was his Prostate Cancer had returned and he deteriorated further.More complaints to a higher authority to get him moved to a Nursing home 5 minutes walk away.Not with out its challenges from the original NH. John moved a year after his first placement.He passed away there 3 months later,with lots of love and care from the staff. They were truly amazing and couldn’t do enough for him and us as a family.I checked on the first care homes status after our complaint and was horrified by the unannounced visit from inspectors and their finding. The home had mainly Agency staff with no dementia training.They fell short in all aspects according to the report. I feel early diagnosis is essential for not just the subject but their families who should be informed as a family of what to expect, the various stages of Alzheimer’s,help that is available for us all.I feel very strongly that we need designated trained Alzheimer’s/ Dementia Teams in Hospital at GP Surgeries, like MacMillan Nurses.Resources need to readily available and families shouldn’t have to look for private support, the Government doesn’t seem to acknowledge how people and their families are affected by this dreadful disease, it needs to get its finger out and start to get a plan in place.
Margaret
Mum was diagnosed with vascular dementia in 2015. For much of the early years they were both somewhat ‘in denial’. They had very little support from the dementia care service but as much as possible from myself and mainly my wife as I was working full-time in London.
To cut a long story short Mum is now (and for the past year) placed in a very good care home (Silversprings in Thorrington) and is at stage seven (1-7) of the global deterioration scale so has very severe cognitive decline and no metal capacity. Both my parents worked all their lives as a marine engineer and a mental health nurse. They managed to raise me and my sister, paid off their mortgage and somehow saved £140,000. Most of their hard earned savings have now been spent on the care home fees. We are about to request local authority support. If Dad passes before Mum their house will be sold and the funds used for Mum’s care.
Dad’s mental health as a lone carer through the covid pandemic has too declined, he has completely lost his mojo as a highly social member of the Thorrington and Brightlingsea community. Caring for Mum at home was absolutely a full time 24/7 job. We don’t really know how hard this was.
In 2021 and 2022 our family actively organised two lovely bike rides through constable country and raised funds for Alzheimers research and the Local volunteer based Dementia Support Group in Wivenhoe. The community support was amazing.
I’m sure you are aware Alzheimer’s is devastating for families as a whole. The last 10 years have been horrible for both my parents, there are many many lessons to learn and in my view our society needs to change, and change quickly to deal with an aging population and the increasing prevalence of dementia.
Heathcare - it’s just not at all comprehensive , barely visible in my view for patients and carers. Once diagnosed we had a bit of advice and no meaningful follow up - you are pretty much left on your own to deal with a very serious health condition with inevitable mortality. GP’s need to flag support for carers in particular.
Finance - a debate needs to be had. Do we take the roulette route we have now or do we all pay.? Inevitably this would be burden on the young for the old but the system now seems grossly unfair. Care homes are effectively 'hoovering up' the nation’s inheritances.
Housing - there should be a massive uptick in the extent of shared communal or sheltered accommodation for the aging population. This could help with the housing crisis. But most importantly would mitigate the loneliness suffered by carers in particular
Research - in comparison to physical healthcare the funds allocated to neurological disease are hugely disproportionate to the harm caused. Much more research investment from Government would help future generations mitigate, slow the onset and perhaps even find a ‘cure’. Early diagnosis is so important - blood markers are already available - we could have done so much more for both parents if we knew what was coming 20 years ago.
Assisted dying - everyone I’ve spoken to (many many people) who have been touched by this condition and when raised have said that there needs to be a change in the law. It’s inhumane currently. The debate going through parliament recently only might allow people with mental capacity to die with dignity. Alheimers must surely be considered. It would be grossly unfair to those afflicted not to do this.
I for one and my wife have both agreed that criteria can be set using a scale similar to the one I referenced. I absolutely want to be able to say should we contract Alzheimers we absolutely do not want our partners nor our children to go through what my parents have. I think it’s imperative that the law is changed to accommodate our wishes and that would be that when a level of cognitive decline is reached we pass with dignity with our families around us. Absolutely safeguards will be needed. But not having the option would be utterly inhumane.
To cut a long story short Mum is now (and for the past year) placed in a very good care home (Silversprings in Thorrington) and is at stage seven (1-7) of the global deterioration scale so has very severe cognitive decline and no metal capacity. Both my parents worked all their lives as a marine engineer and a mental health nurse. They managed to raise me and my sister, paid off their mortgage and somehow saved £140,000. Most of their hard earned savings have now been spent on the care home fees. We are about to request local authority support. If Dad passes before Mum their house will be sold and the funds used for Mum’s care.
Dad’s mental health as a lone carer through the covid pandemic has too declined, he has completely lost his mojo as a highly social member of the Thorrington and Brightlingsea community. Caring for Mum at home was absolutely a full time 24/7 job. We don’t really know how hard this was.
In 2021 and 2022 our family actively organised two lovely bike rides through constable country and raised funds for Alzheimers research and the Local volunteer based Dementia Support Group in Wivenhoe. The community support was amazing.
I’m sure you are aware Alzheimer’s is devastating for families as a whole. The last 10 years have been horrible for both my parents, there are many many lessons to learn and in my view our society needs to change, and change quickly to deal with an aging population and the increasing prevalence of dementia.
Heathcare - it’s just not at all comprehensive , barely visible in my view for patients and carers. Once diagnosed we had a bit of advice and no meaningful follow up - you are pretty much left on your own to deal with a very serious health condition with inevitable mortality. GP’s need to flag support for carers in particular.
Finance - a debate needs to be had. Do we take the roulette route we have now or do we all pay.? Inevitably this would be burden on the young for the old but the system now seems grossly unfair. Care homes are effectively 'hoovering up' the nation’s inheritances.
Housing - there should be a massive uptick in the extent of shared communal or sheltered accommodation for the aging population. This could help with the housing crisis. But most importantly would mitigate the loneliness suffered by carers in particular
Research - in comparison to physical healthcare the funds allocated to neurological disease are hugely disproportionate to the harm caused. Much more research investment from Government would help future generations mitigate, slow the onset and perhaps even find a ‘cure’. Early diagnosis is so important - blood markers are already available - we could have done so much more for both parents if we knew what was coming 20 years ago.
Assisted dying - everyone I’ve spoken to (many many people) who have been touched by this condition and when raised have said that there needs to be a change in the law. It’s inhumane currently. The debate going through parliament recently only might allow people with mental capacity to die with dignity. Alheimers must surely be considered. It would be grossly unfair to those afflicted not to do this.
I for one and my wife have both agreed that criteria can be set using a scale similar to the one I referenced. I absolutely want to be able to say should we contract Alzheimers we absolutely do not want our partners nor our children to go through what my parents have. I think it’s imperative that the law is changed to accommodate our wishes and that would be that when a level of cognitive decline is reached we pass with dignity with our families around us. Absolutely safeguards will be needed. But not having the option would be utterly inhumane.
David
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