Author: Shaky
Topic Replies: 0

Dolls 'help Alzheimer's patients'

Dolls appear to alleviate agitation or distress
Dolls and teddy bears can help people with Alzheimer's disease interact and communicate with others, researchers have found. The team from Newcastle General Hospital studied the benefits of dolls after seeing how one patient bonded with a teddy bear from her son. Patients bond with and care for the dolls, and staff found the toys gave them something to talk about. The research was presented to a British Psychological Society Conference.

This exciting and innovative research shows how important it is to engage people in meaningful activities in all stages of dementia Alzheimer's disease patients can lose their intellectual, social and emotional abilities over time.

Anecdotal evidence has suggested patients offer ways to either interact with or take care of something that they seem to have a sense of ownership and responsibility for.

Dolls appear to alleviate agitation or distress, help overcome communication difficulties, and reduce withdrawal.

They are sometimes used in "reminiscence scenarios" to stimulate memories of an earlier rewarding life role such as that of a parent.

'Quality of life'

In the small-scale study, 14 residents in a Newcastle nursing home were given a doll or a teddy bear.

They were then assessed over a 12-week period. Researchers found patients interacted better with staff and other residents.

Dr Ian James, who worked on the study, said: "Using toys to help people with dementia has been looked at before as it is an important, non-drug based approach to behaviour disturbances in dementia residents.

"What we have done with this study is to look at their use over a longer time period and to investigate whether patients chose to have a doll or teddy bear.

"The findings will, we hope, help advise other clinical teams in their use of this technique." He added: "We found people who wouldn't have spoken at all before would speak.

"Clearly, using a doll doesn't reverse dementia, but it did seem to improve quality of life." Around 50 dementia patients now have dolls or teddies as part of the group's research.

Connecting

Clive Evers, director of information at the Alzheimer's Society, said: "This exciting and innovative research shows how important it is to engage people in meaningful activities in all stages of dementia.

"Reminiscence and attachment therapy is one way to connect with people in the later stages of dementia."

He added: "There could be many reasons that some people with dementia enjoy having a doll." But Dr Evers added: "It is important to remember that dolls and teddy bears will not work for everyone.

"People with dementia benefit enormously from a range of activities and care homes should try to find activities that suit different individuals."

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

Statins may slow dementia

Scientists have found further evidence that statins, the cholesterol-reducing drugs, may protect against dementia and memory loss.

The study, published in Neurology, found that statins – which are normally taken to reduce heart disease risk – may cut the risk of dementia by half.

The five-year project examined 1,674 Mexican Americans aged 60 and over who were free of dementia. 27% of the group took a statin drug. 130 of the total group developed dementia during the study.

The researchers controlled for a number of other risk factors, including education, smoking, diabetes, stroke and genes, but still those who took statins had an approximately 50% lower chance of developing dementia.

Rebecca Wood, Chief Executive of the Alzheimer’s Research Trust, said: “This is an encouraging development in the fight against dementia. It adds to previous research into the potential benefits of statins in reducing memory loss. However, people should not take statins unless medically advised to do as, as side-effects can be unpleasant. We need much more research into this possible prevention for dementia. Studies like this offer hope to the UK’s 700,000 people who live with the condition.”

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

Marriage reduces Alzheimer’s risk


A new study suggests that those who do not live with a partner in midlife could be at an increased risk of developing Alzheimer’s disease.

The findings suggest that married people, and others who live with partners, having regular close social interactions, have a 50% lower occurrence of dementia.

The 21-year study of 1,449 Finns found that those living with a partner in midlife were significantly less likely to show cognitive impairment compared with all other groups (single, separated, divorced or widowed). Married people and those living with a significant other in midlife had a 50% lower risk of having dementia in late-life compared to those living alone. This was the case even after adjustments were made for education, obesity, cholestoral, blood pressure, occupation, physical activity, smoking habits, depression, genes, age and gender.

The researchers found that people who had been single all their life had a doubled risk of dementia, and divorcees who remained single had a tripled risk. More dramatically, widowers before midlife who remained widowed had a six times higher risk of developing dementia compared with those who remain married throughout mid and late life.

Rebecca Wood, Chief Executive of the Alzheimer’s Research Trust, said: “These findings are particularly worrying for the UK: a society with a high divorce rate, marriage at an all-time low and ageing population. This is the first study of its kind to examine the link between midlife marital status and dementia, adding to previous research suggesting that social interaction reduces dementia risk. It is fascinating that cohabitation has such a beneficial effect. We urgently need more research into lifestyle factors and dementia risk if we are to halt the UK ’s dementia epidemic. 700,000 people in this country live with Alzheimer’s and other dementias, a number expected to double within a generation.”

_______________________________________________________________________

That certainly strikes a chord with my Mothers decline since my Dad passed away in 1984, does make you think?

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 1

Thanks CJ,

Here's more info . . .

Britain's shame: Recalling his mother's dementia, Michael Parkinson warns that this country's neglect of the elderly is disastrous

(Michael Parkinson)

Whenever I'm asked to nominate my favourite interview, I invent a different answer every time. Fact is, I haven't got one.

If the question is "what kind of people did I most enjoy interviewing?", then the answer is simple: old people.

To talk to Dame Edith Evans, the actress, in her 80s and still enchanting, and Commissioner Catherine Bramwell-Booth, granddaughter of the founder of The Salvation Army, who was 95 when she won the Speaker Of The Year award; to Ben Travers, the playwright, and Alastair Cooke, the journalist, long after they had passed what we nowadays assume to be their sell-by date.



Respect: But not all elderly people are treated with the common decency they deserve

To spend an evening in the company of Professor Jacob Bronowski, a member of the team which invented the A Bomb and the author of one of television's towering achievements, The Ascent Of Man, was, on every occasion, not simply a privilege, but an education.


Would anyone dare to suggest that Sir David Attenborough, in his ninth decade, does not represent all that we can be proud of when we talk about broadcasting, or that Sir John Mortimer should cease being Sir John Mortimer, or that Lucien Freud should stop painting because, according to the way we regard old people, he is well past it?

At the end of the interview with Jacob Bronowski, I asked him an impertinent question which brought a typically thoughtful reply.

I asked him why we should believe anything he had said.

He replied: "Should you listen to me? Yes, you should. Not because you have to believe a single thing I say, but because you have to be pleased that there are people who have lived happy and complete lives, who feel they can speak out of a full heart and a full mind, all in the same frame."

This precisely sums up my feeling about old people. We should listen to them because they know something we don't.

I am writing my autobiography, and have been surprised - pleasantly so - to discover the part older and wiser people have played in my journey to seniority.

It was while recalling some of the veterans I had interviewed and what I learned from them that I was asked to become Dignity Ambassador for the Dignity In Care Campaign.

I'm not sure about the title. It makes me sound like one of James Bond's exotic girlfriends.

Also,"dignity" is a strange word, with connotations of pomp and privilege.

Maybe "compassion" is a better word.

What we are trying to do is to promote a better attitude to old people in care, to persuade some of those who look after them to see beyond the wrinkled face and the grey hair and treat them not as objects, but as people who have lived Bronowski's "full" life and are worthy of respect.

Ours is a specific task aimed at a particular group of old people, but it will work only if we experience a general change in the way the elderly are viewed in this country.

As we become more and more obsessed with "yoof", we brush aside the senior generation, relegating it to the foot locker of priority, hoping it will quietly curl up and go away.

In doing so, we have ignored the link between young and old - seen at its most important and profound in the relationship between child and grandparent, and at its most practical in the way the older generation can be both an inspiration and mentor to the young.

As I write, there is a debate in the media about whether or not Harrison Ford, aged 65 and therefore past it, is too old to play Indiana Jones.

The real story is about Mr Ford's longevity as a film star, and how he has stayed at the top of his profession for so long.

In other words, what has he absorbed about his craft that might prove useful to the young person endeavouring to make the grade in a tough profession - any tough profession?

The aspiring young would certainly find more clues about fulfilling potential by exploring Mr Ford's career than by watching The Apprentice or imagining life begins with an audition for Britain's Got Talent.

As part of the Dignity In Care Campaign, I am to accompany Health Minister Ivan Lewis on a nationwide tour.

The journey will no doubt revive memories - some unpleasant - of my mother's experiences of being an old person in nursing homes and hospitals.

She was 95 when she died, and had suffered dementia for the last few years of her life.

It's not the stink of stale urine or the sound of a neighbour sobbing, or the dead, lost look in their eyes you remember most vividly, but the trivia of neglect.

One day, we found her dressed in another person's clothes; her false teeth were often caked with food, stained and dirty; and when we complained about her being dumped for a long time on a bed in a corridor, they put her in a nursery with Mickey Mouse wallpaper.

Another time, she was accommodated in a mixed ward with an old man who kept exposing himself.

Anyone who has visited an elderly person in hospital or a home will know what I am talking about, and many of them will catalogue a longer and more serious list of complaints than mine.

On the other hand, there were nurses who fulfilled their duty of care with that added ingredient best described as love.

One or two of those who looked after my mother at one nursing home came to her funeral.

I can think of no better example of respect than that.

What is the answer? Well, first of all we could all take note of Julia Neuberger's recent book, Not Dead Yet, which sets out the problem in a clear and vigorous manner and, with equal clarity, suggests some answers, including turning care into a better paid and more honourable profession.

But her main thrust is that we discard old people at our peril.

She writes: "If we fail to rethink our attitude to older people , we will head even faster towards a fractured society in which various groups, older people included, will feel they have no part and no care for the future. And that would be a disaster."

It would also be a denial of the notion of progress, the idea that each generation provides the inspiration for the next to follow.

The generation that came before my own was one that had fought a just war and won it at great personal sacrifice, and yet was both uncomplaining and self-sufficient.

It also built the Welfare State, helped demolish class barriers, produced the generation which rampaged through the Sixties and created a dynamic, modern Britain.

To be neglectful, even contemptuous, to men and women who did that is not simply disastrous, it is also shameful.

Daily Mail - 29 May 2008

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: C J Sach
Topic Replies: 1

Hiya, hope you are all well. I don't know if any of you read the mail, but the paper has announced they are making an ambassador for the elderly in their fight for diginity campagnie, i think its Michael Parkinson, might be worth while writing to the mail.

Author: Shaky
Topic Replies: 0

Brown vows to make care 'fairer'

Gordon Brown seems to be desperately hoping to regain the political initiative after poor local election results. . . . he has pledged to reform the social care system for England's ageing population. Which effects us all!

He says that without a radical shake up, the care system in England alone faces a £6bn shortfall within 20 years.

His speech kicks off a six-month public consultation focused on making care services fairer and affordable.

In Scotland, personal and nursing care is free, whereas Northern Ireland and Wales still have the means-tested system that England has.

Mr Brown's speech, to the King's Fund in London, came as forecasters say that in the next two decades a quarter of the UK's adult population will be over 65 and the number of people over 85 will have doubled.

Selling homes
Growth in the number of elderly and disabled people with care and support needs is expected to put huge pressure on services and the benefits system.

Speaking to charities, NHS workers, trade unions and local government leaders, Mr Brown said that the current means-tested system does seem unfair.

He said he understood the anxieties of families who fear having to sell their own homes to pay for long-term care, and of losing assets they would otherwise have passed onto family or friends.

To combat this, he suggested ideas including better collaboration between health and social services, and helping people to save for their old age while protecting their homes and inheritance.

He also said he wanted care to be more responsive to demands for independence and it must be made easier for people to stay in their own homes.

"This is an issue at the heart of our ambition to create a fairer Britain. Of course, helping relatives is a challenge that most families rise to - however difficult it becomes," he said.

'Looming crisis'

"But that doesn't make it any easier. Nor does it remove family worries about providing physical care that is needed - or take away people's concerns that at some point in the future they may have to sell a treasured home to pay for their own care.

"It is essential that in future there is fairness for those who work hard and save for their retirement."

Health Secretary Alan Johnson said there were no easy or pre-conceived answers and that it would be a "proper debate" with no pre-determined answers and a green paper to follow.

Paul Cheesman on the social care he receives
He told BBC Radio 4's Today programme the current system was "inadequate" and he did not want to leave the problem to future governments.

Lib Dem leader Nick Clegg accused the government of "11 years of delay and dither" in its management of social care.

"This government has presided over a collapse in elderly services," he said. "Ministers have responded to the chronic warnings of a looming crisis only with criminal under-funding.

"Our proposals for a 'personal care payment' would ensure a fair deal for all elderly people who need personal care and would put an end to the injustice of poor access to social care."

Technology

But Niall Dickson, chief executive of the King's Fund, welcomed the announcement, stressing: "All main political parties agree the current system is complex, unfair and unsustainable - all of them know we need to look at radical solutions which will provide better care, promote independence and not penalise those who save."

David Rogers, chairman of the Local Government Association Community Wellbeing Board, said there was a funding "black hole" because financial support for councils had not kept pace with the demands of an ageing population.

"Social care budget increases have not kept pace with demographic changes, forcing councils to withdraw services for people with low and moderate needs, such as help with the cleaning and bathing," he said.

Our conclusions

Let's hope the penny has finally dropped, we have all been crying out for change for such a long time, won't hold my breath given the current financial situation our Country is facing with Government borrowing becoming a real concern again!

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

Another success against the NHS flawed CHC criteria!

Last January, the son of Ruby Pearce won a landmark victory against her trust over the funding of her care. Many were quick to predict the case would open the floodgates to more claims.

Over the past few weeks there has been a slew of reports highlighting both the iniquities and inequalities in our system of funding long-term care for the elderly.

Ruby Pearce lost her battle against Alzheimer's, but her son won his case against Torbay Primary Care Trust

There has been widespread criticism of the "postcode lottery" whereby elderly people with similar health problems are assessed very differently when it comes to paying for care services. Whereas a minority of pensioners find that their local NHS is prepared to pay for their entire care package, others find they are left to foot the bill themselves. With a typical nursing home costing upwards of £500 a week, these fees can quickly swallow pensioners' savings, forcing many to sell the family home.

There has also been condemnation of the confusing and often contradictory "eligibility" criteria imposed by various health authorities to decide who does – and who does not – receive free care.

These problems were thrown into sharp relief by the recent case of Ruby Pearce, an 84-year-old woman who was suffering from Alzheimer's Disease. She was forced to sell her home to pay care fees after Torbay Primary Care Trust in Devon ruled she did not qualify for free NHS Continuing Care. But after her death two years ago her son, Mike Pearce, continued to fight the trust, arguing that her severe medical problems meant she should have been entitled to the highest level of funded care. The case went to appeal and he won. The health authority has agreed to refund £50,000 of fees.

Not surprisingly, given the publicity surrounding these issues, charities supporting the elderly and the disabled as well as financial advisers have reported an increase in the number of queries regarding long-term care funding.

Does this ruling mean that anyone suffering from Alzheimer's will receive free NHS care?

No it does not. The appeal looked at the very individual medical needs that Ms Pearce was facing. It did not base the decision to refund her nursing fees solely on the fact that she was suffering from Alzheimer's. In this case it does appear that her health needs were severe; for example, she was unable to swallow or chew food herself, so needed assistance with feeding.

Anyone who needs nursing care, either in hospital, a nursing home or in their own home, will have their own individual needs assessed to determine how this care is paid for. However, Age Concern has welcomed the publicity this case has received, as many people with Alzheimer's have previously been routinely rejected for NHS Continuing Care.

My elderly mother has been discharged from hospital. Does this mean that the family now have to pay for her care?

It is a common misconception that once a person is no longer in hospital she has to pay for her own care. Likewise, it is not true that people in nursing or residential homes automatically have to pay for their own care. Every person needing long-term care, either because they are elderly or disabled should be individually assessed by their local health authority. Initially this should look at just their medical and health needs, not their ability to pay.

If it is found that their primary need is a health need, then – in theory at least – they should qualify for fully funded NHS care, regardless of where this care is given.

What is NHS Continuing Care?

This is often also called "fully funded" NHS care. Anyone qualifying for this level of care should get all their medical fees, and associated costs paid in full by the NHS - in practice their local health authority. If they are in a nursing home this will include the accommodation costs.

What happens if I don't qualify for NHS Continuing Care?

If you do not qualify then it is local social services, rather than the local health authority, that are responsible for your care. Unlike the NHS, social services are able to assess your ability to pay. Those with assets over £21,000 in England and Northern Ireland – which can include family home – will be forced to meet the cost of living expenses and "personal" care in full. They receive a contribution (known as a Registered Nursing Care Contribution) to pay for their actual nursing care.

How can I tell if I qualify for Continuing Care?

This, I am afraid, is the $64,000 question. Each primary care trust has its own complex "eligibility criteria" which it uses to assess whether individuals qualify for this funding package.

Eligibility criteria vary between health authorities. Evidence suggests some health professionals do not even understand these guidelines and even within the same authority, two people with very similar health needs can be assessed very differently when it comes to fully funded NHS care.

These eligibility criteria attempt to define exactly what the local health authority deems a "primary health need". The assessment will look at a number of factors, including the nature of the health problem, its severity, its complexity and whether the condition is unpredictable or stable.

However, a recent report by the charity Carers UK suggests that many trusts are tightening up these criteria and only the pensioners with the most severe health needs now get full care. According to Age Concern 25,000 people in the UK now receive NHS Continuing Care. But the charity reckons that from its analysis of the health needs of residents of care homes upwards of 100,000 people may potentially be eligible for this funding. Of course if all applied and successfully received this funding, it would create massive financial problems for the NHS.

What is the Coughlan case I keep hearing about? How does that affect NHS funding?

Pamela Coughlan was a disabled woman who took the NHS to court after it withdrew funding for her care in a nursing home. In 1999 she won the case in the Court of Appeal. The court ruled that the NHS was responsible for funding care in a nursing home, provided the primary reason for going into this home was a health need. Social services are only responsible if nursing care is an incidental or ancillary need.

However, despite this apparently clear ruling the Department of Health left it to local health authorities (which subsequently became primary care trusts) to determine their own eligibility criteria as to how they define a "primary health need". As stated this led to widespread variations as to who receives free care.

Why aren't there any national standards regarding NHS Continuing Care?

The Department of Health will published a more detailed framework on long- term care funding this spring. This is expected to set out more detailed national guidelines on how individual trusts determine who qualifies for free care.

Can I challenge a decision made my local Primary Care Trust?

Yes you can, but be prepared for it to be a long, hard slog. Many people do get a decision overturned, but unfortunately many more do not. The first step is to check that the Primary Care Trust has followed the correct procedure in making its assessment. The Health Ombudsman says that it should be a multi-disciplinary team that makes the assessment, not, for example, just one district nurse.

There has to be proper consideration given as to whether the patient qualifies for continuing care. If they are turned down, then the reasons and the eligibility criteria should be fully explained to the patients and where appropriate their next of kin.

If this procedure has not been followed then you should immediately seek to have your case reassessed. Even if the correct procedure has been followed, patients can still appeal against a PCT decision, particularly if you think the decision made by the health authority does not abide by the principles laid down in the Coughlan case.

Those whose appeal fails can also take their case to the Health Ombudsman.

Where do I go for more information?

Your local PCT or social services should be able to provide you with a complaints or appeals procedure. You should also be able to get a copy of local eligibility criteria from your PCT. See this forum for useful help, advise and media awareness videos and the Petition.

Top tips

1. Claim attendance allowance. This is a non-means tested, non-taxable benefit paid weekly at the lower rate of £41.65 if you need care by day or night or at a higher rate of £62.25 if you need care by day and night.

2. Make an NHS claim. Make sure you claim an NHS contribution towards your nursing home fees, even if you are only staying for a short respite period.

3. Is it a health need?

If you are on the highest band of NHS contribution, make sure you are not entitled to full NHS funding. The NHS has to pay for your care if the need for care primarily results from a health need.

4. Are you entitled to council tax exemption? If your property is left empty while you move into care, you should receive full exemption from council tax until it is sold.

5. Ensure "12 week property disregard" is upheld. The local authority must disregard the value of your property for the first 12 weeks of residential care and assist you with your fees if your other capital is below £21,000 and you meet the other assessment criteria of their local authority.

7. Split joint accounts. For people paying for care from a joint account, split the account into separate single accounts immediately to benefit from state assistance as early as possible.

8. Seek specialist advice.

9. Join us on this Forum for help and support from people in the same boat as you are? Watch all the media we have been associated or contribued to on our ever increasing Awareness section. . .
http://www.fightthebureaucracy.org/downloads.html




_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

82% of the population feel as we do!


A recent poll has revealed that 82% of people believe the Government should put more funding into dementia research.

This reflects the concerns of the All Party Parliamentary Group (APPG) on Dementia which will report its findings today.

The group is expected to highlight issues over the use of antipsychotics for dementia patients - a move welcomed by the Alzheimer's Research Trust, who earlier this month published research showing most patients with Alzheimer's on long-term antipsychotic treatment would benefit from having the drugs withdrawn.

Rebecca Wood, Chief Executive of the Alzheimer’s Research Trust, said:

“The APPG report highlights the urgent need to develop better treatments for Alzheimer’s. With more research funding, we could produce better drugs that are fit for purpose. The low priority given by the government to the development of new treatments for dementia is illustrated by the fact that only £11 is spent on UK research into Alzheimer's for every person affected by the disease, compared to £289 for cancer patients.”

The APPG report is expected to call for the mandatory training of care home staff and will demand that care homes follow NICE guidelines which recommend that treatment using antipsychotics is reviewed after three months. It is also expected to call for family and friends of the patient to be involved in the decision to prescribe the drugs.

Recent research, funded by the Alzheimer’s Research Trust, raised serious concerns over the long-term use of antipsychotics. The investigation from King’s College London found that the long-term use of anti-psychotic treatment worsened verbal fluency in people with dementia. Further results to be published later this year suggest people on the drugs may die on average six months earlier.

Rebecca Wood continues: “We are calling for the use of these drugs as a last resort only, regular monitoring of patients who remain on the drugs so they may be withdrawn when behavioural symptoms are no longer severe, and better training of care staff. And of course - an urgent increase in research funding to find new treatments.”





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TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

Drugs 'kill 23,000 Alzheimer's victims a year'

By Sarah Womack, Social Affairs Correspondent, The Telegraph



More than 23,000 elderly people with Alzheimer's could be dying prematurely in care homes each year after being given drugs to keep them quiet, a report claims today.

Anti-psychotic drugs, which are not licensed to treat dementia but are prescribed to control agitation, sleep disturbance and aggression, are being given to 100,000 elderly people to keep them "quiet and manageable", says a report by Paul Burstow, the Liberal Democrat MP and a campaigner for the rights of elderly people.

Despite studies that show the drugs can increase the risk of strokes and have other harmful side effects, the report claims the Government has failed to act to stem their use.

The report comes as research by three universities says long-term use of anti-psychotics offers "no long-term benefit for most patients".

The claims in the report will fuel the debate over the use of powerful drugs, dubbed "chemical coshes" because of their strong sedative effect, on care home residents.

Mr Burstow cited a yet-to-be published study by King's College London that gave a placebo to one group of Alzheimer's patients and anti-psychotics to another for 12 months.

The study, funded by the Alzheimer's Research Trust, found that after 24 months, the placebo group had a 78 per cent survival rate compared with 54.5 per cent for the rest; after 42 months the survival rates were 60 per cent versus 28 per cent.

Mr Burstow said: "There are around 244,000 people with dementia living in care homes, and the Alzheimer's Society estimates 100,000 are being given anti-psychotic drugs. Of those, I am saying that 23.5 per cent could be dying prematurely as a result of being prescribed anti-psychotic drugs - or 23,500 people a year."

Neil Hunt, of the Alzheimer's Society, said: "The over-prescription of anti-psychotic drugs to people with dementia is a serious abuse of human rights. Anti-psychotics should be used as a last resort."

Mr Burstow's report, which will be debated in the Commons today, calls for urgent police action and a ban on routine prescribing.

The drugs involved are thought to include Risperdal, Largactil, Serenace, and Stelazine, made by Janssen-Cilag, Sanofi-Aventis, IVAX and Goldshield respectively. None recommends the use of their drug in Alzheimer's patients.

Mr Burstow said: "Using drugs to restrain vulnerable older people with dementia is no different to strapping them to a chair. It is an abuse of their human rights. Ministers are guilty of being complacent. There should a ban on prescribing anti-psychotic drugs in all but the most severe cases of dementia."

A Department of Health spokesman said: "Guidance to health professionals and care staff is very clear: anti-psychotic drugs should only be used when they are appropriate as part of best clinical care practice."





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TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

My I take this opportunity to wish Stephen Johnson and his family our deepest respect at this time of double grief, after the sudden loss of his Mother, I'm sad to report Stephen's Brother Rod lost his battle for life on the 27th March. You may be aware of all the media attention Stephen achieved in fighting for his Brother's right to Continuing Health Care. Now Rod is free from pain, I'm pleased to announce Stephen is now concentrating his efforts to claw back all those unlawful Health Care bills and will be taking appropriate measure for recompense, he has the most prestigious contacts and we wish him good luck, we are all with you!


http://uk.youtube.com/watch?v=vABgLHEGhdM

http://www.fightthebureaucracy.co.uk/dvd/nhs_x10.php




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TCB, Shaky

(fightthebureaucracy.org)

Author: Stephen Johnson
Topic Replies: 1

Dear Phil,

Once again, many thanks for putting the programme on You Tube. Perhaps we are geting there.

Kind Regards,

Stephen (Johnson).

Author: Shaky
Topic Replies: 1

Our good friend STEPHEN JOHNSON's long term fight to receive CHC funding for his brother Rod is highlighted once more on Television.

I urge all of you to watch and take in the points raised - we are proud to be associated with 'STEPHEN JOHNSON' & 'BLEDDYN W HANCOCK' for their endeavors in helping many people short changed by these NHS failings.


http://www.fightthebureaucracy.co.uk/dvd/nhs_x10.php

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 1

Well done Shelley,

All the best for you and your Mother! - well done for hanging in their and getting your just desserts



_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shelley
Topic Replies: 1

Hi Folks,

At last Mum has been refunded her fees, totalling £127055.50 including interest.

There is more negotiation needed on one or two things, but it is a relief.

Shelley

Author: Shaky
Topic Replies: 1

You will be aware that Stephen Johnson allowed the filming to go ahead yesterday with the BBC, even after the sudden death of his mother this week.
The show will be between 12-1pm 2nd March on the Politics Show, BBC1 North West.
It is channel 978 if you have Sky.
Stephen is talking about his brother Rod who is in a nursing home and his fight for Continuing Care.

http://news.bbc.co.uk/1/hi/programmes/politics_show/default.stm

If you cannot see it on the tv you can watch the programme on the link.

I will work with Stephen to get a version embedded on this site too.

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 1

To our good friend and contributor Stephen Johnson:

Our thoughts are with you and your Family at the sudden death of your Mother, I know she would be proud of all the effort, dedication and knowledge you have contributed to fighting for the rights of your Brother Rod and all of us in turn,

Phil Shakespeare

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 1

Congratulations Shelley,

This is wonderful news, a great ray of light for all of us to aspire to!

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shelley
Topic Replies: 1

Hi folks

At long last the PCT have agreed to pay £120000+ into Mums account this week and as there is a discrepency over interest, any balance due, following review by a 'senior' person, will be paid the following week.

A great triumph for Alzheimer patients.

Keep fighting.

Shelley

Author: Shaky
Topic Replies: 1

Thanks for the info and welcome back, appreciate your input






_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: C J Sach
Topic Replies: 1

Hi everyone
Idon't know if any of you remember me, it has been a long time, anyway was watching GMTV this morning and they were doing a feature on care homes and they want people to email them with their basically horror stories, I have called them but just thought that I would let you all know in case you wanted to do this.
I hope you are all well, do you know that it was a year ago on Wednesday that my poor father in law died, at least he has now been a peace for a year, my poor old mother in law was actually broken into on the Monday night, but she was not at home, and has £2,000 worth of jewelley taken.
Sorry Phil managed to remember my pass word in the end. Anway take care keep up the good fight.

Author: pat1066
Topic Replies: 0

Dear All

I wanted to make you aware of this research appeal.

Alzheimer’s UK is an independent registered charity (No.1115434), seeking to raise funds throughout the UK to further the research, education and care necessary to deal with this disease and the ever increasing demands that it places on individuals and families.

They want to help those involved in confronting Alzheimer’s disease, and to promote programmes in education and care, but right now their priority is research. They need people to support their proposed research effort in British hospitals and universities.

This is their first annual campaigns to raise funds to fight this disease. Their aim is to raise sufficient funds to make a real difference in the fight against Alzheimer’s disease.

They wrote to me where a donation could be made by filling in their reply slip, but you can also phone them on 0845 094 5338 to make a donation. Their address is:
Alzheimer’s UK REC
Freepost RRGK-ZXJT-LGLY,
London
SE1 3YA

If you decide to make a contribution, they request if it can be done by the 15th February 2008.

Also the Alzheimer’s Society ( Charity No. 296645), have an online clearance shop where many items such as card and wrap, kitchen stuff, garden items, gifts for him & her, gadgets & games, stationary, and many more items have been discounted.
Link:
http://www.alzheimerssociety-clearance.co.uk

Thank you for reading my post and I hope you found it useful.

Pat.

Author: Shaky
Topic Replies: 0

Powerful piece from the Royal College of Psychiatrists website . . . .

The campaign to increase the understanding of mental health problems and reduce their [stigma] and discrimination.

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Dementia is a devastating disease. It robs you of all your faculties. They say it is like a second childhood. But it isn't.

A child is a developing person. A man with dementia is a disintegrating person. He was a man. He lived alone. He had a family, a wife, children. He was gay. He was black. He was white. He was a successful businessman. He was someone who didn't do what he wanted.

He spent his adult life getting washed, dressed, going to the toilet, shaving, eating. He could speak. He could laugh at a joke. He could look after himself.

Now, bit by bit he slides into dependence. It is not childlike. The infant takes her care for granted. He fights against his. The baby loves having her nappy changed. His incontinence pad shames him. The toddler gladly takes the other's hand. He cannot abide being lead from place to place. Or if he can, you cannot bear to see it.

You cannot bear to see the man who walked with you through the park becoming someone who no longer knows what a park is.

The change comes slowly. Who is to say that this is the moment at which you stop seeing him as himself? He loses his dignity when you stop treating him with dignity.


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1. Alzheimer's Disease and Dementia

When he was 40 this man said that if he ever ended up like this he should be taken out and shot. Now he's 70 and he can't remember being 40. On a good day he can still recognise his daughter.

She can recognise him every day. He is not the man he was. But parts of him are still there. His particular frown. The way he folds his handkerchief. His delight when he hears the birds sing.

When a person can't remember or do the things he used to do, he is like a different person. If he also acts differently you might say he is not the man he was. But that depends on what makes him the man he is.



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2. Alzheimer's Disease and Dementia

Grandpa used to be a wonderful storyteller. Now he doesn’t talk much at all. He tries to sometimes, but the words don’t come out right. Then he talks louder and shouts and points with his hand. Sometimes he cries.

There are many sorts of dementia such as Alzheimer’s disease. They all affect the brain. Gradually the person loses his memory. He can’t do the things he used to. In the end he cannot speak.

This doesn’t happen overnight. It happens gradually, bit by bit. In the middle of it is a person who knows he is losing his mind, his independence, and his place in the world. Alongside him is his family, who know they are losing him. Just because he cannot speak, it does not mean he cannot understand.



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3. Alzheimer's Disease and Dementia

He used to be an angry young man but now he's an angry old one. He was quite a sight in those days - printing pamphlets, shouting from the platform, struggling with the police. He was a leader of the student revolution. They took notice of him then. Now they only pay attention when he threatens the nurse with his stick.

Dementia affects the brain. The person gradually loses his intelligence, his memory and his personality. Some go quietly, others rebel. They can shout or swear or even strike out. This is distressing for people close to them.

But for the man himself? Perhaps it is better than being invisible.



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4. Alzheimer's Disease and Dementia

In the war this woman was a land girl in Norfolk. Now she keeps trying to go back to the farm, but it isn’t there any more.

People with dementia become muddled. They forget where they are. They may act as if they are somewhere else. They may not know what time it is. They may mix up night and day. They can wander out of their houses in the small hours believing it is time to go shopping.

This woman is confused. She is losing contact with the present. The past has become more real. The future remains unknown.



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5. Alzheimer's Disease and Dementia

If your mind goes do you go with it?

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

Diagnosis

Alzheimer's disease cannot be diagnosed with complete certainty during someone's lifetime. It is only after death that the plaques and tangles that are characteristic of the disease can be identified in the brain. As a result, there is no specific test for diagnosing Alzheimer's. The family will notice slight differences in persona, unusual 'out of character' behaviour and loss of concentration, speech is a good indicator, initially forgetting the subject matter to loss of communication skills all together, as in my Mom's case. You may also notice aggression and frustration in usually mild mannered people. Unexpected depression can some times be an early indicator. Normally diagnosed initially from the most common symptoms, such as memory loss. Standard diagnostic tests include a full medical history, careful physical examination, tests include naming famous faces, telling the time, indicating a clock-face, mental recall and even naming the prime minister. In most cases memories from years ago are easier to recall than modern thoughts and stimulants. I found, in those early stages, Mom would get frustrated by the fact that she could not remembers things and would adlib the answers in order to fill those gaps in the story. I also remember a sudden loss of awareness with regards to day and night.

Other tests, such as a CT or MRI scan of the brain, may be used to make sure that the person does not have a condition which can produce symptoms similar to Alzheimer's, such as other forms of dementia, or depression.

After eliminating other causes, a diagnosis of Alzheimer's disease can be made with an accuracy of about 90%. Sadly their is NO cure, mentally agility can help to slow down the process if caught early.

There are some medicines that seem to delay the progress of the disease. The National Institute for Clinical Excellence (NICE) has reviewed three drugs - donepezil, rivastigmine and galantamine - and has decided that they are of some value in certain people with moderate Alzheimer's disease. They should be continued only if the person improves, or at least does not become worse, and the person must be reviewed every six months.

A new medicine called memantine may have the same effect for some people who have moderate or severe Alzheimer's disease. However, NICE has not yet completed its review of memantine. NICE is currently proposing that this medicine should not be available on the NHS in England and Wales as a treatment option for those with Alzheimer's disease, although no final decision has yet been taken, watch this space!

Support and care SHOULD BE the most important part of treatment for Alzheimer's disease. Many people with the condition are cared for in the community, caring for a person with Alzheimer's can be very difficult. Support from district nurses, who can advise on day-to-day nursing care,
community psychiatric nurses, who can advise on caring for someone with a dementia illness and social services (I find from many letter and messages sent to me that its the Social Services eliment that falls down most, Many SS depts are at logger-heads with Primary Care Trusts on who should be responsible - unfortunately MONEY issues and POLITICS stand in the way of better and fairer treatment for Elderley patients, most cases of Alzheimers manifest between 5 years of initial symptoms, social care needs can be addressed in early and less severe cases BUT final stages need the specialist help and support of EMI facilities funded by PRIMARY care trusts i.e. OUR NHS (free at the point of delivery, in other words already contributed to by our taxes!), the social care can be obtained through your local council authority (means tested and a passport lottery of different charges apply throughout this Country!).

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 0

AN OVERVIEW

Alzheimer's disease is a progressive disease of the brain that causes dementia, gradually destroying a persons memory and ability to learn, reason, make judgements, communicate and carry out normal daily activities. Alzheimer's disease is the most common cause of dementia, accounting for about 60% of all cases.

The disease attacks the cells, nerves and transmitters in the brain, causing tangled clumps and bundles (known as plaques and tangles) of certain proteins to develop inside and outside the brain's cells. This gradually destroys the connections between the brain cells that are essential for normal mental activity.

Alzheimers disease typically begins with minor memory problems, mood swings, and difficulty finding the correct words. Later, there may be confusion, and changes in personality and behaviour.

Most cases of Alzheimer's develop in those aged 65 or over. Below the age of 65, Alzheimer's is rare, affecting about 1 person in 1000. Over the age of 65 it affects about 1 in 20. The risk of developing Alzheimer's continues to increase with age, so those aged 80 have a higher risk of developing it than those aged 65. By the age of 85 nearly 1 in 2 will have the disease.

Women have a slightly greater chance of developing Alzheimer's than men. About 500,000 people in the UK are believed to have the disease.

Alzheimer's disease is a progressive disease, which means that it gets worse over time.

The symptoms of Alzheimer's disease can vary greatly, but those with the disease often have one or more of the following:

Problems with memory - this may include forgetting the names of people they know well, forgetting where they live, or even who they are. Normally, recent memories are affected first, with memories of events further in the past only affected once the condition becomes more developed. As Alzheimers progresses, memory loss may affect memories of recent events so completely that the person appears to be living in the past - they may even think of themselves as young and not recognise their true age.

Problems with speech and language this may include forgetting simple words, using the wrong words without noticing, or their conversation may become simplified, repetitive or irrelevant.

Confusion - becoming confused in new surroundings or by new people, or about who or where they are. They may lose track of time so that they are unsure what day it is, or even whether it is morning or afternoon.

Changes in mood or behaviour - becoming irritable or aggressive. As Alzheimer's progresses they may lose their normal inhibitions and begin to say or do inappropriate or antisocial things; in some cases this can include inappropriate sexual behaviour. They may lose interest in the outside world or their own care, giving up interests and hobbies, paying little attention to their personal hygiene, or forgetting to wash or change their clothes.

Difficulty performing simple tasks difficulty doing everyday tasks such as cooking a meal. They may begin cooking and then wander away, forgetting what they were doing, or they may prepare a meal and then forget to serve it. Problems learning new information, ideas or skills.

Alzheimer's disease can also cause:

hallucinations, delusions, obsessive or repetitive behaviour, a belief that the person has done or experienced things that never happened (confabulation), disturbed sleep, or sleeping in the daytime and being awake at night, or incontinence. As Alzheimer's becomes severe, it can cause other symptoms, including:

difficulty swallowing, difficulty changing position or moving from place to place without assistance, physical deterioration, loss of appetite or loss of weight, increased vulnerability to infection, and complete loss of short-term and long-term memory.

Although the symptoms of Alzheimer's vary from person to person, three broad stages of the disease can be recognised - mild, moderate and severe:

Alzheimer's usually starts with a gradual, almost imperceptible, loss of brain function. This is often noticed first as minor memory problems, similar to everyday forgetfulness, which can be compensated for by keeping memo pads and lists. However, the loss of memory often causes anxiety. Being unable to perform even simple arithmetic is another common early sign of Alzheimers disease.

As Alzheimer's progresses it enters a moderate stage, where memory loss is more severe, often affecting the memory of recent events in particular. Sometimes, those with this stage of the disease become confused and invent events or conversations to fill the gaps in their memory (known as confabulation). There is a progressive loss of awareness of the current time or place (disorientation), with uncertainty even in familiar locations and inability to give the date or even the year. Language problems increase, with inability to find the right word (dysphasia). These difficulties can cause alarm and frustration, and this can in turn lead to sudden and unpredictable mood changes.

In the severe stage of Alzheimer's, there is severe disorientation and confusion. There may be perception of non-existent sights, sounds and smells (hallucinations) and false ideas of persecution (paranoid delusions). These are usually worst at night. The individual may become demanding, suspicious and sometimes violent. They often start to ignore personal hygiene, and incontinence of urine and faeces is common. Those with severe Alzheimer's disease can do little on their own and will normally need full-time care.

Alzheimer's is considered to be a fatal disease, although the actual cause of death is usually another illness (such as pneumonia) which develops as a complication in a person already weakened by Alzheimer's. Those with Alzheimer's die an average of eight years after first experiencing symptoms. However, the disease progresses at different rates in different people and the duration of the disease can vary from 3 to 20 years.

It is not known exactly what causes Alzheimer's disease. Scientists think there is unlikely to be a single cause, but a number of factors that come together to trigger the disease. However, they have identified certain risk factors that increase the likelihood of developing Alzheimer's:

Age is the greatest risk factor for Alzheimer's disease, with most cases affecting people over 65. The likelihood of developing the disease doubles every 5 years after age 65.

Family history of the disease is a risk factor, and the risk of developing the disease is higher if a parent, sister or brother has it.

Scientists have found some genes that are known to directly cause Alzheimer's, so that anyone who inherits them is almost certain to develop the disease, usually before age 65, and sometimes as early as their 30s or 40s. However, these genes have been found in only a few hundred families worldwide. Alzheimer's caused by these genes is known as familial Alzheimer's disease.

Those with severe head or whiplash injuries appear to be at increased risk of developing Alzheimer's.

Alzheimer's is a feature of Down's syndrome, and 15% of people with Alzheimers disease have a family history of Down's syndrome. Recent research has concentrated on the gene responsible for the production of a substance called beta-amyloid protein. This protein is found in the tangled fibre masses that develop in the brain of people with Alzheimer's disease, and also in those of older people with Down's syndrome. The gene for this protein is on chromosome 21. Those with Down's syndrome have an extra copy of this chromosome in every body cell.

Research has shown that the same factors that increase the risk of heart disease may also increase the risk of Alzheimer's. This means that those who smoke and those who have high blood pressure or high cholesterol levels may be at increased risk of developing Alzheimer's.

Some studies suggest that remaining mentally active throughout your life, especially as you get older, reduces the risk of Alzheimer's. However, the evidence is currently inconclusive.

NHS DIRECT (2008)

_________________
TCB, Shaky

(fightthebureaucracy.org)

Author: Shaky
Topic Replies: 3

Thanks Kev for all your hard work, again I urge all that are caught up in this circus to watch and take notes on this superb overview of THE LAW regards YOUR NHS and its framework, since 1946!

_________________
TCB, Shaky

(fightthebureaucracy.org)