The Politics of Dementia Care

[Tender Face]

Hi Kayla ... not sure I've got it right but what I understand of the 'pyramid' is that there are too few people at the top trying to fund the increasingly broad base at the bottom ...... we have less and less people paying into NI etc - and more and more needing the benefits ... I absolutely agree in a 'Welfare State' we should look after ALL vulnerable people ... but there isn't enough funding to go round (presumably higher taxes and NI is the answer but not one that wins elections????) and so choices have to made .... and that's where I struggle ....

Of course, as a parent, I want lots of taxpayers' money to go into education .....but on a subjective level that's funding my son who may qualify for something or other in several years time and take his income and taxes abroad - never paying into the system which has supported him .... when I look at it like that it seems like less 'investing in the future' but downright gambling on it - with taxpayers' money - whereas mum has 'contributed' throughout her life (and still does) and we seem to have to 'battle' - and still expect to pay for in some cases - securing any services for her ...... meanwhile she is still contributing for future generations .....????

(And charities seem to be relied upon to fund and fill the 'gaps' and 'needs')

I can't make sense of it .... it just seems downright disrespectful to a whole generation who have given so much .....

Love, Karen, x

 

[shauny]

a debate

hi all, glad to see the other point of view Kayla. Tender face im not sure we live in a civilised country, i think we live in a sick selfish sadistic society where the goal is pusuit of individual happiness and to hell with everyone else. This concept of individualism started just after ww1 certainly it is well discussed at universities. Its too much to go into here but its a big part of what is going wrong with our so called civilised society. Shauny.

 

[Libby]

I always used to be under the impression that the NI we paid in our wages went to fund the National Health Service. If there is a shortage in the fund, why not change the way we pay it?

At the moment we pay 11% on any earnings between 97 and 645 pounds - then it drops to 1% on anything over that. Why can't the 1% be increased to 5% or something similar. A couple of years ago it increased from 10% to 11% - can anyone honestly say that it made a big dent in their nett pay? If everyone paid a little more, then the elderly could be cared for as I believe is their due.

Well done Karen for starting this thread - a lot of interesting views.

Libs

 

[jenniferpa]

I thought NI went for pensions, not to support the NHS. Could easily be wrong though.

Jennifer

Edit to add: yes I am wrong. some percentage of NI goes to the NHS. It was 1% (2001) - not sure how much it is now. Ok - approx 12% of the NHS's budget comes from NI contributions

 

[Tender Face]

...... certainly it is well discussed at universities.

Hi Shauny, great that it's discussed at theoretical level by aspiring academics..... I hope the view that we are in a "sick, selfish and sadistic society" is somehow counterbalanced by as much debate on 'generalisms' ???? I only have to witness on TP the selfless, caring attitude of so many people still giving so much to others under their own difficult circumstances to have to disagree with that .....

Perhaps an interesting opening for debate amongst theorists would be to "Define 'civil' in relation to dementia care"???? No offence, Shauny, I really appreciate your passion as I hope you do mine ..... (ignorant as it is) but I personally would like to see the political stuff moved from the theoretical to being voiced by and for the people who actually live it - not those from the comfort of student debating forums ......

Take the take on NI .... my understanding is that it was/is intended to pay benefits (including pensions, Jobseekers' Allowance etc ) .... how many times has the problem of being able to claim Attendance Allowance for dementia sufferers been raised here?

Doesn't it make you cross that some people seem to be able to choose not to work (because that's what they choose - and find some excuse to rationalise it - absolutely not decrying those who CANNOT work for whatever reason) and find some kind of benefit to claim for from this limited fund .... whilst people with or caring for someone with dementia seem to have a battle to claim for any miserly allowances seen fit out of said fund - and certainly not out of choice?

There appears to be no democracy in dementia ......

Karen

 

[Kayla]

My Mum and Dad worked and paid their NI and taxes all their lives (Dad worked until he was 70) and never claimed any benefits at all, not even family alowance, because I was an only child. Therefore in theory, Mum has thousands of pounds in unclaimed benefits in the general fund. However, when people pay their NI, they are actually paying for the current pensioners and beneficiaries, rather than for their own future.
I feel that society as a whole has a very negative attitude towards older people and someone losing their job at 40 or 50 will probably find it hard to be recruited at the same level again. Whenever I go to the supermarket, I'm amazed at the number of people who are obviously grandparents, looking after small children, even if they have mobility problems themselves. It is also common to see pensioners taking care of very elderly parents or neighbours.
Volunteers in charities are commonly the retired or semi-retired and much valuable work is done by them. I don't think anyone has the right to make a value judgement about another person's life. Life is very precious at whatever level.
There are people struggling to look after their elderly or disabled relatives and they don't need the hassle of worrying about finances. More support in the community by social workers could mean the difference between coping at home or having to put that person in care. More sheltered accommodation and assisted living might also help to maintain independence. My Mum went from her home straight into a Care Home, where a sheltered housing unit may have kept her looking after herself a little longer.
I'm also surprised that the new housing developments being built as part of the Thames Gateway Project do not include plans for sheltered housing and Care Homes, although they are supposed to be creating "sustainable communities". There will be 30,000 new homes eventually. It seems as if the older people are not considered part of the community. Caring for an adult is as much a barrier to employment as caring for small children and if people are going to live, work and have leisure facilities in the same location, they will need also Care for dependent relatives.
Kayla

 

[English Lady]

A solution

The best way to get the best deal for elderly people in this country is to use the next election to register your disgust in the policies of a government who, on the surface APPEAR to pay lip service to the needs of the elderly.

In fact, this government has done more to shove them under the carpet than any other, in more ways than just care issues. What about ex-servicemen not being able to march at Remembrance Sunday parades because of the Health and Safety Fascists.

Disgusting! People are prepared to vote for the inhabitants of the Big Brother House but not something as important as a government.

We can start by voting at the next local council elections this coming May or even standing, as I do, on these and other issues. We need to make ourselves heard. We can all do our bit. We'll have to because nobody else will.

And before anybody says, NONE of us have time but we have to MAKE time, the way elderly people made time to save our hides from the horror of fascism - only to find themselves dictated to and shunted around by this despicable, self-centred, hypocritical and insensitive government.

 

[shauny]

sick society

Hi Karen a few interesting points u made and a good debate. I still maintain that we are a sick society and in my experience working in the field of dementia i double maintain that. A question i would like to ask u all is where is the moral leadership and courage that is needed to make our society better. Im afraid i cannot see it either in my community, the papers that i read, the sports that i follow, that mad house on the banks of the thames do u want me to go on ha ha. Anyway this little forum shines like a beacon and yes all of us who use it should have the courage of there convictions and say we as a society need to change. Shauny.

 

[Tender Face]

The best way to get the best deal for elderly people in this country is to use the next election to register your disgust in the policies of a government who, on the surface APPEAR to pay lip service to the needs of the elderly.

Can you back that up? What would an alternative government achieve for the elderly? (Or perhaps significantly 'Early Onset' dementia sufferers' to hone this to the core)....... One key issue is that dementia does NOT just affect the elderly and the provision for 'early onset' care and support.... well .... I'm not best qualified to speak on that one....... except I have learnt there is a great big gaping hole ......

I understood Elections were about registering votes 'for' .... not 'disgust against' - in which case don't votes get split and everyone ends up in some creek without a paddle .....?????

Shauny, which papers are you reading? Not those left behind on the Metro? And you keep watching the Ashes, you're bound to get despondent ..... As for the mad house on the banks of the Thames - trust you're referring to that pub in Wapping????

You're spot on! The 'moral leadership' - the courage - whatever you want to call it comes from the hearts of the people privilieged to live in a democracy ... not the 'token' figurehead of a political party..... so I come back to ... some are treated more democratically than others..... how do we lobby and change it??????

(Kayla, you are a star......!!! Some fabulous points .... know you are keen on writing - can you harness all your salient points as a project in its own right for the good of AS?)

Love, Karen, x

 

[Kayla]

Dear Karen,
Yes, I do want to use my writing to make people more aware of dementia issues. I've enrolled on a Novel writing course and I want to write my Mum's life story but also write a novel highlighting the problems of dealing with the symptoms of Vascular Dementia. Hopefully I can use humour to make it easier to read, but I think it is a subject that is not discussed enough.
I'm also taking an Advice, Information and Guidance course and I would like to use this to eventually help carers and their families with some of the difficulties caused by dementia. I felt like caring for Mum was completely taking over my life and it would have been so useful to have the information that I have discovered through TP much earlier. Now she is in a Nursing Home everything seems to be under control.
I am surprised that there isn't a branch of the Alheimer's Society in North Kent, especially with the Kent Thames Gateway developments. The heavy industry decline in Dartford and Gravesend has helped to cause some of the most deprived areas of the country, even though Kent is considered to be a wealthy county. Transport links to Maidstone and Tonbridge, where there are branches of the Alzheimer's Society, are not very good and public transport would be too expensive for many.
There are many opportunities for Urban Renewal grants of various kinds for voluntary organisations and it would be fantastic for the peole of North Kent, if we could establish good quality support for dementia sufferers and their families. I am very happy to assist in any way that I can to set this up.
I would also like to see special courses for Carers which would offer information about the disease and ways of dealing with its results, as well as the chance for improving job skills, so they can keep up with the job market. I shall do my best to persuade KAES to set these up. There will be plenty of jobs for all levels of skills as businesses move into the area, but employers will need a skilled labour force.
Kayla

 

[Skye]

Kayla,

GREAT respect!

You have experienced the problems, seen the gaps in provision of care , and are prepared to do something about it.

I'm still at the stage that my life has been completely taken over, but I'm so thankful for those people who have the awareness, insight, talent and WILL to make things happen.

Go for it, girl.

 

[Skye]

Can you back that up? What would an alternative government achieve for the elderly? (

I understood Elections were about registering votes 'for' .... not 'disgust against' - in which case don't votes get split and everyone ends up in some creek without a paddle .....?????

You're spot on! The 'moral leadership' - the courage - whatever you want to call it comes from the hearts of the people privilieged to live in a democracy ... not the 'token' figurehead of a political party..... so I come back to ... some are treated more democratically than others..... how do we lobby and change it??????

Karen I agree. This is not a party political issue, and this forum should not be a platform for party politics.

We all want to get the best possible deal for people with AD and their carers, and equality of mediction and care. We can only do that by raising awareness.

We can then choose whether or not to support any party that promises it.

 

[Tender Face]

More sheltered accommodation and assisted living might also help to maintain independence. My Mum went from her home straight into a Care Home, where a sheltered housing unit may have kept her looking after herself a little longer

Kayla ... not asking you personally to answer .... but this is a huge point .... .

... looked at the possibility of mum having 'sheltered housing' more than 12 months ago (pre diagnosis) ... it was mum suggested it, prepared to 'sell up' and move on and enjoy what equity she released for herself..... ...... and to me gave her all the benefits of privacy and independence - not to mention security and safety .... aside from visiting health professionals, social stimulation etc etc ....... unless she chose otherwise ...... BUT (and there's always a BUT?!) - because she had 'memory problems' sheltered living was a no-goer .....

I can only assume she is too much of a 'Health and Safety' risk to other residents.....

I see no option for someone like mum trying to live independently other than 'own home' to residential home ..... but why should 'memory impaired' be discriminated against when 'mobility impaired' are not?

K, x

 

[Kayla]

Dear Karen,
I really believe that there should be a greater variety of provision of care for vulnerable adults, whether they be elderly, mentally or physically disabled or suffering from dementia. Many have a mixture of problems so an assessment would need to be made about suitability for sheltered housing or residential care. My Mum was disabled with arthritis long before she began to have memory problems. The sheltered housing in her area was only for people of limited means, not for social need. There are a few private assisted-living developments in some parts of Kent, but not close to where we live.
When I contacted the Social Services for help, there seemed to be little they could do beause Mum was able to wash and dress herself and prepare food and hot drinks. The social worker couldn't understand what the problems of losing track of the time of day were and how confused Mum became with her medication. She couldn't make any useful suggestions that we hadn't already worked out for ourselves.
Once Mum started having falls and hallucinations, she really did need 24/7 care rather than sheltered accommodation, but she went into a Care Home in 2005, still able to sort out her laundry with help and prepare hot drinks and simple meals. Once in the home they did everything for her, even putting away her clean clothes in the drawers. It just seems a shame that the elderly can't have an apartment and look after themselves as much as possible, with staff being aware of any problems.
It also seems a pity that when old people have a fall and need Nursing Care, they need to leave their Care Home and go into a new place just at a time of feeling very vulnerable. It would be useful to have Homes that catered for both Care and Nursing needs in different units so that staff continued caring for patients. This would lead to less confusion and distress.
Many old people are stubbornly independent and it would be much easier to persuade them to move into sheltered accommodation than a Care Home. A couple of Homes in the area have created self contained flats so that people can live independently, but within reach of 24/7 help. This might be a solution for couples trying to care for each other and finding it rather a struggle.
It is always good to feel that there is a choice and no pressure to follow a particular course of action.
I think it is time that a policy was drawn up to consider different ways of caring for the older members of society, so that they can maintain their dignity and independence for as long as posible, without compromising the health and safety of other people. If your Mum can look after herself in an ordinary house, then she should manage even better in sheltered housing. There shouldn't be discrimination against those with memory problems, just an assessment of how realistic it would be to live in a new situation.
Mum was still driving in 1999, but gave up because of her arthritis and she was walking and caring for her dog until he died in 2002. It is surprising how quickly people can decline in health and it is difficult to predict their housing needs. An ordinary three bedroomed semi suddenly becomes an enormous undertaking and worry overnight. If only there had been more suitable accommodation available in the area a year or so before Mum went into the Care Home.
Kayla

 

[EllieS]

Politics of Dementia

Dear Tender Face

I've just be browsing through the site after being away from it for some considerable time.

If I can be of any help at all I would love to be: I have spent the last 3 years pursuing continuing care funding for Mum with partial success. I have had the help (?) of a solicitor.

I've piles and piles of paperwork .

Won't bore you with any more at moment but let me know what sort of info you would find helpful and I'll let you have what I know.

My Mum by the way is not anything like as bad as some of the people on TP so I really do think some people are losing out because of the difficulty in having to FIGHT for our parents rights.

Hope to hear from you.

Eleanor

 

[Tender Face]

Eleanor, especially ....

Sorry, I haven't responded sooner .... for various reasons not 'TPing' as much these days .....

I'm so with the sentiment that we seem to have to 'fight for' or at least 'seek out' (whether for a parent or partner ) ... what support we can muster where with any other 'medical' condition it would be 'offered' - and include in that support services etc - not just drug treatments .....

I hate (and I hate the word hate) injustice .... and that's all I can see for mum for how ever long ahead .....

I hate too (ooops, said it again!) waste .... so if you've got piles and piles of paperwork .... how many others? I'd like to think that collectively, somehow we could make a difference ..... so that the next generation of sufferers/carers don't each individually have to go thru the 'fight' ....

Best scenario no-one has to fight at all - because we've reached the Utopia where prevention and cure have been reached ...

But while I'm holding my breath might as well try to make myself useful ......


Love, Karen

 

[noelphobic]

I'm so with the sentiment that we seem to have to 'fight for' or at least 'seek out' (whether for a parent or partner ) ... what support we can muster where with any other 'medical' condition it would be 'offered' - and include in that support services etc - not just drug treatments .....
Love, Karen

I don't think having to fight for treatments and services is confined to people with dementia Karen. My son has type 1 diabetes and I belong to an email based support group. Many of the parents there have terrible problems getting the right kind of care and support for their children. both from the medics and in schools, and there isn't great understanding or awareness of the condtion amongst a lot of 'professionals'. There are also often stories of people with various forms of cancer who can't get the latest form of treatment because NICE haven't approved it. I think if you looked at most medical conditions and spoke to people who have them you would find that many of them don't feel they are getting the right support.

I did read recently that NICE were being investigated because so many people thought that they weren't so NICE, which is hardly surprising.

I'm not saying this to be argumentative. I do know how hard it can be when someone close has dementia and you are trying to do the best you can for them, especially when you feel that you are not getting the support that you and they should be.

 

[Tender Face]

Hi Noelphobic

I absolutely agree. I'm sorry - I made rather a global statement there, didn't I?

I guess I liken it to giving to charities ..... they're all good causes but I can't support everyone of them .... so I put what efforts or financial support in to those that matter most to me - and yes, that's driven by first or second hand personal experiences and therefore being able to 'identify' with them ......

It's a really valid point you raise in another respect .... and I know this point has been raised before - it's about trying to secure support WITHOUT detracting from others who need support ......

I think I need to lie down in a darkened room and cogitate!

Love, Karen, x

 

[noelphobic]

I absolutely agree. I'm sorry - I made rather a global statement there, didn't I?

I guess I liken it to giving to charities ..... they're all good causes but I can't support everyone of them .... so I put what efforts or financial support in to those that matter most to me - and yes, that's driven by first or second hand personal experiences and therefore being able to 'identify' with them ......

It's a really valid point you raise in another respect .... and I know this point has been raised before - it's about trying to secure support WITHOUT detracting from others who need support ......

I think I need to lie down in a darkened room and cogitate!

Love, Karen, x

No apology necessary Karen. I think it is difficult for anyone to know the problems faced by someone with any condition unless they have it themselves or live with someone who does. I also agree about the charities - you can't give to everything so you have to choose the causes that are closest to your heart, and that generally only comes about through experience of the condition.

 

[Kayla]

Many people suffer from several serious health conditions and it can be difficult to treat one without causing problems elsewhere. When Mum broke her hip, the operation was a complete success. However because of her rheumatoid arthritis, Mum couldn't take any weight on her hands, to walk using a Zimmer frame.
She hasn't regained mobility and has gone downhil physically and mentally. If she hadn't had the RA, I think she might have walked again and been able to stay in her care home. Originally she was rather "vague" and had some hallucinations, but could still hold a lucid conversation. Now she can still relate to people and communicate quite well.
I think she might have been able to stay in the care home for another year or so if she hadn't suffered from RA. The combination of several health conditions makes the overall state of the person's well-being far worse than it should be. I guess the drugs used may also conflict with each other. More research needs to be done about this.
Kayla