Was my mother horrifically unlucky or is it generalized? A discussion on improving support for dementia patients.

[StephanT]

Dear carer community. I recently lost my mother to FTD/PPA. For 7 years I supported her through this ordeal, 5 of which full time. Now that she has passed, I have questions, to see if my experience was 'unique' in some way, or if what I consider to be deficiencies (with grave consequences) in how public health services "deal" with dementia, its diagnosis, and treatment, are generalized.

1. To my surprise, I discovered entire threads on medical forums where doctors argue that marker-based (genomic markers) should be prioritized, while others think 'MRI analysis is sufficient". I don't know about your situation, but my mother was never given access to ANY of these tools. In fact, it took a tragic car accident where members of the public could have been seriously hurt for her doctor to administer a very half-hearted MMSE test. Do you also find these technologies are only present in academic papers?
   
   
2. We're not keeping a close eye on people with dementia. During her entire stay in 3 care homes (one was dedicated to early onset, the second was more nursing-focused, and the last one had more access to medical staff), the decline in my mother's cognitive abilities was NEVER tracked, not even once. I only realized that now because I made a request for her entire medical file. They only tracked her weight! Did you also have the unfortunate experience of being the only person seemingly interested in providing adapted care based on how advanced the illness was?
   
   
3. People with dementia aren't getting the right kind of cognitive stimulation. My mother was French, spoke only French, and the international care home hosting 70+ patients from the UK, Germany, and France only ever: a) administered group classes in Spanish (pointless, evidently, and very frustrating for my poor mother) b) were seemingly unaware of the benefit of cognitive stimulation, period. In other words, I and I alone had to provide that stimulation, ranging from simple exercises to singing with her or playing a simple game. Did you also experience this? Are you experiencing it now?
   
   
4. Medical treatment was gravely lacking. I had to reach out to private doctors at great cost to obtain further information on the correct molecules, a difficult balance to achieve. Had I not gone that extra mile, my mother would have never been given: a) SSRIs to manage her very visible depression b) benzodiazepines to alleviate her anxiety c) continued medical support for a pre-existing condition (beta-blockers) as well as medicine to treat co-morbidities. In other words, they applied a 'one size fits all' strategy wherever possible (read: memantine for everyone) without any consideration for her sub-type. My heart goes to people dealing with Lewis's body or vascular dementia in environments such as these.
   
   
5. Sometimes, doctors group all dementia patients as if they have Alzheimer's, and this stops them from getting the right care. For 7 entire years, I must have dealt with a good dozen 'specialists'. I have a lot of respect for neurologists and the work they do, but when it came to GPs, the same word came back: "Alzheimer's". My mother was visibly shaken each time the word was said, and I battled medical systems day after day for the correct diagnosis of FTD/PPA to be returned. DId you also get the 'Well, it's Alzheimer's', it's all the same" treatment?
   
   
6. Dementia comes with a lot of stigma, and some people even think about ending their lives, including my mother, who had stockpiles of meds (she was a nurse with access) to do the unthinkable, which was thankfully prevented. Did you also face such stigma? To respect their privacy I will not name them, but several individuals related to my mother immediately 'disconnected' when they heard she suffered from dementia. What could we do, collectively, to end this unfair stigma once and for all?
   
   
7. My finances are well, nonexistent after caring for my mother. I don't regret it one iota (it was money well spent). But not everyone had savings like I did. And there's this strange, almost surreal understanding from the general public that care homes are 'free'. Let me be crystal clear: in France, a country with an advanced, fantastic social 'net', only the medical aspect of the illness was covered by social security. ALL other costs were charged to the patient's family. This includes hosting and medications that were not 'standard'. In practical terms, the minimum expected was roughly 2340 euros/month. I do know there are advanced social programs that I reached out to, but... I was told that "only total bankruptcy" would entitle my mother to receive this cover. Did you also struggle financially?
   

All these issues have led me to wonder if there isn't a clear and well-defined need to provide better self-help care tools for the community and for the families. I've reached out to doctors and discovered that they shared my views, and some even had developed their own self-rating cognitive scales, which they passed on 'discretely' to the families to track the evolution of the disease.

It's 2023, not 1933. I worked 25 years in IT, and I can assure you we have the tech, the affordable tech, to alleviate most of what I describe here. Did you know AI can be used to generate 'family photos' that help patients better understand the passage of time and recognize loved ones? Did you know that it would be absolutely trivial to provide families with the correct tools to not only monitor their loved ones but also provide 'escapism' through entertainment to manage people with dementia? Or that MMWaves detectors cost next to nothing, and can track breathing rate, falls, and visits to the restroom, but - when did you ever see one deployed in a care home?

What are your thoughts? I'm determined to campaign for the right to dignity in dementia patients, and your feedback is invaluable. Thank you.

 

[canary]

Hello @StephanT

I think the problem is the lack of funding for dementia services.
And IMO the reason for this lack of funding is because dementia is not a "sexy" condition. Unlike cancer there are no plucky survivors to interview, nor does it affect children who can provide adorable photos of vulnerability. It affects the elderly and although promo literature likes to portray them as sweet old people gazing gratefully at their carer the reality (as you will know) is not like that.

Please excuse my cynicism, but dementia has become the Cinderella of medical conditions and, yes, the stigma doesnt help. Once, cancer was the Disease That Cannot Be Named - but now it is dementia.

 

[Violet Jane]

I have been closely involved with two people with dementia (my mother and an elderly friend) who both lived in England and so I can only speak about England.

I can deal with your point about finances straightaway by saying that in England you pay for all care, both at home and in a care home, if you having assets over about £23,000; below that, and depending on income, you contribute on a sliding scale. The person's home is disregarded if the PWD leaves a spouse or partner in the home once the PWD moves into a care home (there are some other disregards as well). If you get Continuing Health Care then all your care fees are paid but it's very, very difficult to get in the case of dementia as most care is classed as social care rather than medical care.

On the tracking of cognitive decline point, some people have tests for a couple of years after diagnosis but many don't and once a person is in a care home they don't bother.

I think that you're really asking for individualised care, tailored to the person's particular form of dementia and stage of illness. There would have to be a lot more staff, and better trained staff for this. Most homes in the UK find it hard to recruit and nobody wants to put more into the system. As @canary says, dementia is a Cinderella of illnesses. There's no cure and no hope of improvement and so I think that people feel helpless.

Friends and family certainly do disappear and it's very hurtful. They appear at the funeral with their feeble excuses and platitudes. I had to grit my teeth.

Personally I don't think that depression and suicidal feelings are an unreasonable response to a diagnosis if you have encountered dementia. My mother went right to the end of her dementia 'journey' and it was horrifying.

 

[Hermann]

The whole experience has clearly been very distressing for you, Stephan, and saddening to read about.

As things are at present, I have no faith in the ability of either the NHS, the social services, or care providers to adequately meet the needs of people with dementia. Hence, even if I thought the cost of £16,000 a month (yes, you read that right) of putting my parents into care was justified, I would never do so.

Whilst I have a slight hope that a very large increase in taxpayers' funding could improve the lives of PWD when they are users of the NHS, I don't believe an injection of taxpayers' money, however substantial, would fix community or residential care provision for PWD, as long as that provision is left, as it currently is, largely in the hands of private enterprise.

By its very nature, private enterprise will inevitably channel new inflows of funding not into improving care but into improving returns for shareholders. So, a big influx of cash into residential and community care would be sure to see an expansion of care providers' portfolios - more care homes opening, bigger geographical footprints for community care providers, and bigger bottom lines for the businesses concerned, but little, if any, corresponding improvement in the actual care these entities are providing.

The idea that commercial care providers, when given a windfall, would primarily channel this extra funding into increased wages for their employees*, or the time spent per visit when caring for clients in their own homes, or the ratio of staff to residents in care facilities, or, most importantly, into better standards of care for the people in receipt of that care, strikes me as fanciful.

*leading, potentially at least, to higher calibre staff, more commitment from them, and higher standards of care.

 

[LondonDaughter]

@StephanT
I hear you. I'm UK based caring for my 86 yr old mum who is mid-stage vascula dementia. The lack of support on all fronts is shocking. The dismissal after diagnosis (off you go, here's a leaflet), the confusing maze of info and lack of clear info about care options, THE COST and the general lack of continuity of support not just for PWD but those of us valiantly trying to keep up and map out a future that can work for everyone. I also feel that I want to get on board with campaigning for change but not sure I have the time/energy at present.

 

[Palerider]

Dear carer community. I recently lost my mother to FTD/PPA. For 7 years I supported her through this ordeal, 5 of which full time. Now that she has passed, I have questions, to see if my experience was 'unique' in some way, or if what I consider to be deficiencies (with grave consequences) in how public health services "deal" with dementia, its diagnosis, and treatment, are generalized.

1. To my surprise, I discovered entire threads on medical forums where doctors argue that marker-based (genomic markers) should be prioritized, while others think 'MRI analysis is sufficient". I don't know about your situation, but my mother was never given access to ANY of these tools. In fact, it took a tragic car accident where members of the public could have been seriously hurt for her doctor to administer a very half-hearted MMSE test. Do you also find these technologies are only present in academic papers?
   
   
2. We're not keeping a close eye on people with dementia. During her entire stay in 3 care homes (one was dedicated to early onset, the second was more nursing-focused, and the last one had more access to medical staff), the decline in my mother's cognitive abilities was NEVER tracked, not even once. I only realized that now because I made a request for her entire medical file. They only tracked her weight! Did you also have the unfortunate experience of being the only person seemingly interested in providing adapted care based on how advanced the illness was?
   
   
3. People with dementia aren't getting the right kind of cognitive stimulation. My mother was French, spoke only French, and the international care home hosting 70+ patients from the UK, Germany, and France only ever: a) administered group classes in Spanish (pointless, evidently, and very frustrating for my poor mother) b) were seemingly unaware of the benefit of cognitive stimulation, period. In other words, I and I alone had to provide that stimulation, ranging from simple exercises to singing with her or playing a simple game. Did you also experience this? Are you experiencing it now?
   
   
4. Medical treatment was gravely lacking. I had to reach out to private doctors at great cost to obtain further information on the correct molecules, a difficult balance to achieve. Had I not gone that extra mile, my mother would have never been given: a) SSRIs to manage her very visible depression b) benzodiazepines to alleviate her anxiety c) continued medical support for a pre-existing condition (beta-blockers) as well as medicine to treat co-morbidities. In other words, they applied a 'one size fits all' strategy wherever possible (read: memantine for everyone) without any consideration for her sub-type. My heart goes to people dealing with Lewis's body or vascular dementia in environments such as these.
   
   
5. Sometimes, doctors group all dementia patients as if they have Alzheimer's, and this stops them from getting the right care. For 7 entire years, I must have dealt with a good dozen 'specialists'. I have a lot of respect for neurologists and the work they do, but when it came to GPs, the same word came back: "Alzheimer's". My mother was visibly shaken each time the word was said, and I battled medical systems day after day for the correct diagnosis of FTD/PPA to be returned. DId you also get the 'Well, it's Alzheimer's', it's all the same" treatment?
   
   
6. Dementia comes with a lot of stigma, and some people even think about ending their lives, including my mother, who had stockpiles of meds (she was a nurse with access) to do the unthinkable, which was thankfully prevented. Did you also face such stigma? To respect their privacy I will not name them, but several individuals related to my mother immediately 'disconnected' when they heard she suffered from dementia. What could we do, collectively, to end this unfair stigma once and for all?
   
   
7. My finances are well, nonexistent after caring for my mother. I don't regret it one iota (it was money well spent). But not everyone had savings like I did. And there's this strange, almost surreal understanding from the general public that care homes are 'free'. Let me be crystal clear: in France, a country with an advanced, fantastic social 'net', only the medical aspect of the illness was covered by social security. ALL other costs were charged to the patient's family. This includes hosting and medications that were not 'standard'. In practical terms, the minimum expected was roughly 2340 euros/month. I do know there are advanced social programs that I reached out to, but... I was told that "only total bankruptcy" would entitle my mother to receive this cover. Did you also struggle financially?

All these issues have led me to wonder if there isn't a clear and well-defined need to provide better self-help care tools for the community and for the families. I've reached out to doctors and discovered that they shared my views, and some even had developed their own self-rating cognitive scales, which they passed on 'discretely' to the families to track the evolution of the disease.

It's 2023, not 1933. I worked 25 years in IT, and I can assure you we have the tech, the affordable tech, to alleviate most of what I describe here. Did you know AI can be used to generate 'family photos' that help patients better understand the passage of time and recognize loved ones? Did you know that it would be absolutely trivial to provide families with the correct tools to not only monitor their loved ones but also provide 'escapism' through entertainment to manage people with dementia? Or that MMWaves detectors cost next to nothing, and can track breathing rate, falls, and visits to the restroom, but - when did you ever see one deployed in a care home?

What are your thoughts? I'm determined to campaign for the right to dignity in dementia patients, and your feedback is invaluable. Thank you.

I think you have covered a lot of points which relate to different aspects of dementia care. I think if you look across the pages of the DSF (TP) you will find lots of threads around these issues and campaign ideas, none of which have ever come to fruition. The reality is that the system we have is now so embedded it would cost a fortune to change and the political view is essentially to maintain the status quo. I have had direct conversations with politicians about the state of dementia care in the UK and I can assure you while they agree it is not up to scratch they seem reluctant to consider any real change, this is also coupled with the new drugs that are supposed to be life changing for dementia sufferers, but they have not yet arrived and are likely to be some time yet and when they do will likely be superseded by another newer generation of treatment. So long as this carrot of promise continues to be dangled the politicians will assume the matter will soon be resolved, the reality is that even if newer drugs become available it will never change the need for adequate and appropriate dementia care from diagnosis to end of life -the problem will still be inherent in a broken and failing system.

 

[maisiecat]

Dear carer community. I recently lost my mother to FTD/PPA. For 7 years I supported her through this ordeal, 5 of which full time. Now that she has passed, I have questions, to see if my experience was 'unique' in some way, or if what I consider to be deficiencies (with grave consequences) in how public health services "deal" with dementia, its diagnosis, and treatment, are generalized.

1. To my surprise, I discovered entire threads on medical forums where doctors argue that marker-based (genomic markers) should be prioritized, while others think 'MRI analysis is sufficient". I don't know about your situation, but my mother was never given access to ANY of these tools. In fact, it took a tragic car accident where members of the public could have been seriously hurt for her doctor to administer a very half-hearted MMSE test. Do you also find these technologies are only present in academic papers?
   
   
2. We're not keeping a close eye on people with dementia. During her entire stay in 3 care homes (one was dedicated to early onset, the second was more nursing-focused, and the last one had more access to medical staff), the decline in my mother's cognitive abilities was NEVER tracked, not even once. I only realized that now because I made a request for her entire medical file. They only tracked her weight! Did you also have the unfortunate experience of being the only person seemingly interested in providing adapted care based on how advanced the illness was?
   
   
3. People with dementia aren't getting the right kind of cognitive stimulation. My mother was French, spoke only French, and the international care home hosting 70+ patients from the UK, Germany, and France only ever: a) administered group classes in Spanish (pointless, evidently, and very frustrating for my poor mother) b) were seemingly unaware of the benefit of cognitive stimulation, period. In other words, I and I alone had to provide that stimulation, ranging from simple exercises to singing with her or playing a simple game. Did you also experience this? Are you experiencing it now?
   
   
4. Medical treatment was gravely lacking. I had to reach out to private doctors at great cost to obtain further information on the correct molecules, a difficult balance to achieve. Had I not gone that extra mile, my mother would have never been given: a) SSRIs to manage her very visible depression b) benzodiazepines to alleviate her anxiety c) continued medical support for a pre-existing condition (beta-blockers) as well as medicine to treat co-morbidities. In other words, they applied a 'one size fits all' strategy wherever possible (read: memantine for everyone) without any consideration for her sub-type. My heart goes to people dealing with Lewis's body or vascular dementia in environments such as these.
   
   
5. Sometimes, doctors group all dementia patients as if they have Alzheimer's, and this stops them from getting the right care. For 7 entire years, I must have dealt with a good dozen 'specialists'. I have a lot of respect for neurologists and the work they do, but when it came to GPs, the same word came back: "Alzheimer's". My mother was visibly shaken each time the word was said, and I battled medical systems day after day for the correct diagnosis of FTD/PPA to be returned. DId you also get the 'Well, it's Alzheimer's', it's all the same" treatment?
   
   
6. Dementia comes with a lot of stigma, and some people even think about ending their lives, including my mother, who had stockpiles of meds (she was a nurse with access) to do the unthinkable, which was thankfully prevented. Did you also face such stigma? To respect their privacy I will not name them, but several individuals related to my mother immediately 'disconnected' when they heard she suffered from dementia. What could we do, collectively, to end this unfair stigma once and for all?
   
   
7. My finances are well, nonexistent after caring for my mother. I don't regret it one iota (it was money well spent). But not everyone had savings like I did. And there's this strange, almost surreal understanding from the general public that care homes are 'free'. Let me be crystal clear: in France, a country with an advanced, fantastic social 'net', only the medical aspect of the illness was covered by social security. ALL other costs were charged to the patient's family. This includes hosting and medications that were not 'standard'. In practical terms, the minimum expected was roughly 2340 euros/month. I do know there are advanced social programs that I reached out to, but... I was told that "only total bankruptcy" would entitle my mother to receive this cover. Did you also struggle financially?

All these issues have led me to wonder if there isn't a clear and well-defined need to provide better self-help care tools for the community and for the families. I've reached out to doctors and discovered that they shared my views, and some even had developed their own self-rating cognitive scales, which they passed on 'discretely' to the families to track the evolution of the disease.

It's 2023, not 1933. I worked 25 years in IT, and I can assure you we have the tech, the affordable tech, to alleviate most of what I describe here. Did you know AI can be used to generate 'family photos' that help patients better understand the passage of time and recognize loved ones? Did you know that it would be absolutely trivial to provide families with the correct tools to not only monitor their loved ones but also provide 'escapism' through entertainment to manage people with dementia? Or that MMWaves detectors cost next to nothing, and can track breathing rate, falls, and visits to the restroom, but - when did you ever see one deployed in a care home?

What are your thoughts? I'm determined to campaign for the right to dignity in dementia patients, and your feedback is invaluable. Thank you.

 

[maisiecat]

Hi Stephan,
I am sorry for your loss and admire your desire to try and change things. My experience with my husband was that there is no interest in determining the type of dementia, the best treatment for it or using regular testing to evaluate change.
Without these basics progress can't be made. My husband had Parkinsons dementia for 6 years and then very suddenly piggybacked vascular dementia on top. He was intermittently under the Mental Health team but never saw a Psychiatrist. I spent my working life as a Nurse and I can't think of any other speciality where a Consultant doesn't do first assessment. I tried very hard to get an MRI as he had had one fairly recently so I felt any changes would be easy to see but they refused as being too distressing to him.
I also felt that the memory tests were slightly "fixed" to keep people away from a dementia diagnosis. At the point my husband was urinating in the waste paper bins he stiil had a diagnosis of mild cognitive impairment.
His Dementia nursing home is good with plenty of engaging activities and they do use some tech although I think they also could incorporate some daily stretching exercises and leg and foot tapping.
I hope you have success with your efforts,it is shameful that more money and effort isn't put into it. I am afraid my experience of LA made me feel that was just an asset stripping service and I am determined not to die so they can't take the lot!!

 

[Scarlet Lady]

I agree with the points made by all the posters in this thread. Sadly, I think @Palerider is right when he says that our present system of care is too “embedded“ to have any real expectation of change. This is not just within the U.K. Dementia is possibly one of the biggest, if not the biggest problem our entire world is facing and no country is getting it right, although some may be doing better than others.

We all know the root cause is money (or the lack of it), but there are things that could change for the better if anyone was prepared to think differently. For instance, better diagnosis would be a game changer. We all know that scans are expensive and under resourced, so it’s easy for the medical profession to dismiss expensive diagnostics on the basis of what’s the point because there’s nothing they can do. That may well be true at the moment, but if you don’t have the stats to show you the scale of the problem, how are you ever going to determine what the resources should be? This is why research funding is heavily directed towards cancers: cases are recorded. (Not that I’m suggesting that that should not be the case, of course).

In addition, there needs to be a complete rethink of approaches to care. Care homes should be treated as a service industry, rather than a retail one, run along the lines of big business. Instead of care workers being treated as unpaid family members are, or poorly qualified individuals dragged off the street to be employed with no training, the whole profession should be treated as highly skilled, vocational and rewarded accordingly. If care home owners were looked at as not-for-profit organisations, that would make a massive difference.

If governments would take steps to reform the NHS, instead of expecting the NHS to do it itself, which it patently can‘t or won’t, then maybe we might get somewhere. Our care structure in the U.K. resembles some of the poorest nations in the world which is a disgraceful indictment. However, , as @Palerider has also pointed out, no amount of campaigning or publicity ever seems to make a difference to our situation. I applaud @StephanT ’s commitment to trying to change things for the better in light of his mother’s sad passing, but I’m afraid I’m not hopeful that anyone apart from people in our situation are ever going to listen.

 

[Fozzie]

I have been closely involved with two people with dementia (my mother and an elderly friend) who both lived in England and so I can only speak about England.

I can deal with your point about finances straightaway by saying that in England you pay for all care, both at home and in a care home, if you having assets over about £23,000; below that, and depending on income, you contribute on a sliding scale. The person's home is disregarded if the PWD leaves a spouse or partner in the home once the PWD moves into a care home (there are some other disregards as well). If you get Continuing Health Care then all your care fees are paid but it's very, very difficult to get in the case of dementia as most care is classed as social care rather than medical care.

On the tracking of cognitive decline point, some people have tests for a couple of years after diagnosis but many don't and once a person is in a care home they don't bother.

I think that you're really asking for individualised care, tailored to the person's particular form of dementia and stage of illness. There would have to be a lot more staff, and better trained staff for this. Most homes in the UK find it hard to recruit and nobody wants to put more into the system. As @canary says, dementia is a Cinderella of illnesses. There's no cure and no hope of improvement and so I think that people feel helpless.

Friends and family certainly do disappear and it's very hurtful. They appear at the funeral with their feeble excuses and platitudes. I had to grit my teeth.

Personally I don't think that depression and suicidal feelings are an unreasonable response to a diagnosis if you have encountered dementia. My mother went right to the end of her dementia 'journey' and it was horrifying.

I worked in residential care for twenty eight years. Their personal needs were met. No social interaction was supplied by the council. They all say round in chairs doing nothing. I set up a circle and let them fill up jars with pickling onions to sell for amenities. I was told to stop as a full risk assessment hadn’t been done. They were like prisoners. I got very frustrated as I set up a bingo night in my own time. Bought prizes. I was told to stop as they liked them all in bed by seven. Disheartening way to work so I chucked in my notice as I could stand it no longer.

 

[Rosettastone57]

I agree with other posters and as @canary has said, dementia is just "not sexy" it's not interesting to the public . You'll unlikely to see a go fund me page to raise money for a treatment for an 80 year old , if there was one available in the USA for example. I think the perception is that cancer and heart disease are more important. I'm afraid that even with campaigns to raise awareness, the public simply have no idea of what the illness entails and it's impact on others. Until someone sees dementia in action it will always be "just a few memory issues with a sweet old person being offered a cup of tea by a smiling carer ".

 

[wurrienot]

I am interested to hear the views of everyone else. It appears that we are all thinking along the same lines. We'd like to do something, but our lives are taken up with caring and through experience we know that we will hear platitudes about what a great job we're doing and how strong we are.
I also worry for my own future. I no longer work and had to claim my occupational pension very early. I couldn't live on what I get so my husband is taking up the slack and working more hours. We can't afford to save and our pensions will be tiny. The money that our parents have saved over the years and the houses they own will go on carers/ care homes. The future looks bleak.

 

[pandion]

The whole experience has clearly been very distressing for you, Stephan, and saddening to read about.

As things are at present, I have no faith in the ability of either the NHS, the social services, or care providers to adequately meet the needs of people with dementia. Hence, even if I thought the cost of £16,000 a month (yes, you read that right) of putting my parents into care was justified, I would never do so.

Whilst I have a slight hope that a very large increase in taxpayers' funding could improve the lives of PWD when they are users of the NHS, I don't believe an injection of taxpayers' money, however substantial, would fix community or residential care provision for PWD, as long as that provision is left, as it currently is, largely in the hands of private enterprise.

By its very nature, private enterprise will inevitably channel new inflows of funding not into improving care but into improving returns for shareholders. So, a big influx of cash into residential and community care would be sure to see an expansion of care providers' portfolios - more care homes opening, bigger geographical footprints for community care providers, and bigger bottom lines for the businesses concerned, but little, if any, corresponding improvement in the actual care these entities are providing.

The idea that commercial care providers, when given a windfall, would primarily channel this extra funding into increased wages for their employees*, or the time spent per visit when caring for clients in their own homes, or the ratio of staff to residents in care facilities, or, most importantly, into better standards of care for the people in receipt of that care, strikes me as fanciful.

*leading, potentially at least, to higher calibre staff, more commitment from them, and higher standards of care.

Totally agree with your point about putting more money in to social care while it's run by the private sector being pointless. We nedd to re-nationalise social care in this country (as well the NHS) in order to make any difference. We Own It have been campaigning for this: https://weownit.org.uk/public-ownership/care-work

 

[Scarlet Lady]

Yes, it does, @wurrienot . I’m glad that this did not directly affect me, but I feel so sorry for the families who are placed in a position of having to give up work to provide care for both their parents and grand children. I know that my parents would have been horrified if they’d thought that providing care for them might have meant an impoverished old age for me. We are probably the first generation that has had to deal with the expectations of both parents and children to our own detriment.
And as you say, no cushion of an inheritance to help out in the end because it will all have gone on care costs.

 

[Sue741215]

I feel that the dementia organisations need to get together and campaign now before the election - I feel there are so many people directly and indirectly affected by dementia that we could have some influence on policy if someone would harness this support. It is disgraceful that both the Conservative and Labour leaders completely ignored social care in their priorities and further no-one seems to have called them to account over it. Grrrr!

 

[Hermann]

Totally agree with your point about putting more money in to social care while it's run by the private sector being pointless. We nedd to re-nationalise social care in this country (as well the NHS) in order to make any difference. We Own It have been campaigning for this: https://weownit.org.uk/public-ownership/care-work

Thanks for the link, Pandion. Some food for thought there.

 

[StephanT]

Thank you everyone. I gave this thread a good week so everyone could comment, and I'm surprised by the consistency: lack of funding, high care costs, systematic failures in the healthcare systems and, of course, the omerta on the topic of dementia. Part of me was hoping my mother was the exception, clearly, she was not. Thank you again for your feedback.

The comments around money really touched me because it's a subject we carers are gaslighted on all the time. Thank you everyone. I will inform myself about the various, clearly lacking funding options in the UK, as well as other policies.

I know these forums have a super, super strict policy on self-advertising. I will reach out to an admin before posting links because I started working on what I was talking about, using my former reach in a different industry on social media to raise awareness. The blog, vlog, socials, etc are now all up and next up is a discord server for carers (internationally) to give each other some support, as I remember how alone I felt during those 7 years. If I'm allowed to post those links, I will do so.

Thank you again.

 

[try again]

I think you have to be realistic about dementia care. At the moment it is a progressive disease with no cure. As such the best that can be done is to keep people safe and clean and provide relevant stimulation to their needs
What good does it do to monitor or create stages? It is pointless.
Improving care is the best way to go. To provide carers with a contact (should be GP driven though dementia nurse at practice) who will actually work with the carers and organise the extra care when needed.
What's the point of further scanning or tests? They don't fix anything and take resources away from initial diagnosis and future care.

I am sorry the whole thing has been traumatic for you and it is a difficult thing to live with. My experience has not yet reached its conclusion and I'm sure it will be harrowing

As far as having access to a load of chemicals, I'm sure it is a thing most carers have thought might be a way to control their own future if they develop dementia . Having seen my brother I law die of cancer in the past few weeks and my mother's continued journey with dementia in a strong body, I think we should all be able to express our wishes as to how we wish to die in certain circumstances

 

[Toopie28]

I agree with all of you. It's a nightmare. For me it seems like a never-ending nightmare.

In reading this forum and speaking to people around me. I don't know of anyone who's had a good experience. I often hear "oh it was awful/terrible/so bad" "the council/government will never help" and this is from 10-20 years ago.

I have not been able to accomplish anything for my Ma without ranting emails or screaming about it on facebook or twitter.
It took a year to get funding. And even then it's minimal so I have to put in the rest.
It's not only the NHS, "family" and "friends" that has turned their back on my Ma, but her so called fellow parishioners and priest were so quick to dismiss her and not even give a ****.

Is it just dementia though? For NHS?

Don't you think they just don't care about the elderly? And I think, elderly safely saying could be over 50.

I don't live in Scotland, The plan was to come back to Scotland and live in my retirement years. However after this experience, never. Once Ma passes, I will never set foot in this country again.

@StephanT - I started a website too. I'm naming names and I've put every miserable experience I've been through on there.

I've also put ways around it. And links for help. I don't want anyone to go through this. I know they will. I just hope the maneuvers that I went through might help one person.

 

[Violet Jane]

Well, at least social care is free in Scotland. In England you pay every penny of the costs if you have savings of over about £23K and most of the costs with even modest savings.