Making up for lost times

Imagine losing everything: your memories, your home, your
relationship with your partner, children and friends. Imagine
forgetting how to play the piano, cook or tie your shoelaces.

Dementia is a cruel condition, and one that many people fear. And
as people live longer, the condition is becoming more common. At
present it affects about 700,000 in the UK, a number predicted to
rise to about 840,000 by 2010 and 1.5 million by 2050. Alzheimer’s
disease is the most common form of dementia accounting for 55 per
cent of sufferers.¹

But significant changes are afoot. Treatment for the symptoms of
dementia is only now becoming more widely available. And the recent
health ombudsman’s ruling on the funding of dementia care may pave
the way for significant legal challenges to health authority
funding decisions.

Diagnosis and treatment
There has been widespread criticism of how long it can take for
people with dementia to be diagnosed formally. Simon Denegri,
assistant chief executive of the Alzheimer’s Society, says: “The
lack of knowledge and understanding of dementia among GPs is one of
the biggest grumbles about the care people receive. We did some
research last summer which found that less than a third of nurses
and GPs felt confident about dementia.² It’s partly
concern about having to tell people they’ve got it, and partly a
lack of awareness and training.”

But he says the sufferer’s own anxiety and fear can also play a
part. “People tend to be reluctant to go to their GP with memory
problems – we have known people wait sometimes for three or four
years before making an appointment.”

But the delays caused by professional reticence or private anxiety
have prevented many sufferers from benefiting from new drugs to
treat dementia, such as Aricept, Exelon and Reminyl, in the early
stages when they are most useful. Denegri explains: “These drugs
can alleviate memory loss and confusion to a degree. They can give
people a window of anything up to two or three years where they can
decide what they want and make plans.”

These drugs were approved by the National Institute for Clinical
Excellence in 2001, so they should now be available to patients,
depending on health authorities’ prescribing policies. A newer
drug, Ibixa (memantine), is for people with moderate to severe
dementia and the institute is expected to produce the results of an
appraisal before the end of this month.

But Denegri says: “The institute guidelines did improve access to
these drugs, but there is still a real problem with postcode
prescribing. Research last year by The Maudsley, a psychiatric
hospital in London, suggested that one in four health authorities
were still restricting access – often by capping budgets, capping
the number of patients who could have them, or setting up a long,
drawn-out assessment procedure.”³

Funding
Ann Abraham’s first ruling as health service ombudsman (news, page
10, 27 February 2003) has again thrown the funding of dementia
patients’ care into the spotlight. She found that in the cases of
two dementia patients, Department of Health guidance on funding
continuing care was being “misinterpreted and misapplied by some
health authorities and trusts, leading to hardship and
injustice”.

Put simply, health authorities are defining their eligibility
criteria for “health care needs” too tightly, labelling many
people’s health needs as “social care” needs. Health needs are
funded through the NHS, which is free. Social care needs are
means-tested and recipients are expected to contribute.

Abraham’s judgement has potentially far-reaching ramifications. The
Alzheimer’s Society has already been contacted by more than 1,000
people who wish to challenge the funding criteria used by their
local strategic health authorities. If this groundswell continues,
the NHS potentially faces a remuneration bill running into billions
of pounds.

Jonathan Ellis, Help the Aged’s policy manager of health and social
care, says: “This question about funding of continuing care is a
huge issue. There are about 500,000 people in care homes, and our
figures suggest about half to two-thirds have moderate to severe
dementia – so it’s a sizeable proportion of the population.”

Rather than addressing some of the long-standing inequalities, the
government’s much-vaunted “free nursing care” has created an even
more divisive system for patients with dementia, many of whom will
need long-term intensive care around the clock.

Paying for this type of care in a nursing home can cost £2,000
a month. But because needs such as feeding and helping with going
to the toilet do not have to be provided by a registered nurse,
many dementia patients receive little or no free nursing care. Yet
if the threatened tidal wave of legal challenges to funding
decisions goes ahead, the free nursing care inequity may simply
cease to apply. 

– See also the forthcoming article by solicitor Luke Clements on
the continuing care funding fiasco in Community Care, 22
May.

¹ Figures from the Alzheimer’s
Society. Information on numbers of sufferers at

www.alzheimers.org.uk/News_and_Campaigns/Policy_Watch/demography.htm  

² Alzheimer’s Society,
Feeling the Pulse, 2002.

³ S Mace and D Taylor, “Adherence to Nice guidelines for
the use of anticholinesterases for Alzheimer’s disease”,
Pharmaceutical Journal, Vol 269, 2002 

‘You have to fight every step of the way’

Brian Willetts, 64, cared for his wife, Norma, for several years
after her diagnosis of Alzheimer’s when she was 58. She now lives
in a residential care home that specialises in dementia care.

He says: “She was formally diagnosed in November 1999. I have to
say that our GP wasn’t up to speed at all with Alzheimer’s. We kept
going back and he kept telling us it was just premature memory
loss. Eventually she had a CT scan, and afterwards the consultant
just walked up to us and said ‘Your wife has dementia’. I could
have throttled him. Later I found out that Norma had thought he’d
said she was going to die.

“She was given a ‘severe’ diagnosis straight away, which came as
quite a surprise because at that point we were still going to
social events together. But then she always did put up a good front
in company.

“She went into hospital for the first time in April 2001, and she
went rapidly downhill. I asked the consultant to prescribe Aricept
and he said that her Alzheimer’s was too advanced for any benefit,
but he understood that I wanted to do the best for her and agreed
to prescribe it. I had to pay for it though. It cost £104 for
a 28-day supply.

“After a while the consultant told me I was throwing money down the
drain, and persuaded me to stop. But almost immediately afterward
Norma took a steep downturn. The consultant said it wasn’t related
to stopping Aricept, and I have to believe him, but until then she
had seemed to be maintaining the same sort of level.

“She was in hospital for four or five months and at the end they
took the decision out of my hands and said that she had got to go
into a home, because if she came home with me it would finish me
off. I was grateful for that. It would have been impossible for me
to make that decision.

“At the moment I’m trying to get Ebixa for Norma. The health
authority has said they won’t let her consultant prescribe it, even
if I paid for it. They said it hadn’t been thoroughly tested yet
and might have side effects – although it has been used in Germany
for 10 years. I feel very angry about it. Alzheimer’s is an awful
disease – sometimes I visit her and come out crying. What side
effects could possibly be worse? If there’s anything that could
give her a better quality of life I want her to try it. Why can’t
we be given the choice?

“I’m not ungrateful for the help we have received. But I feel that
you have to fight every step of the way. Nothing has come easily.
I’ve had to battle for everything.”

‘Health and social care distinction is
meaningless’

Gill Herdson’s mother Vera Hanley was diagnosed with
Alzheimer’s in 1996 and died last year. She says: “She was
fiercely independent and, after the diagnosis, she lived at home on
her own for three years. But then she fell, broke her wrist and
went into hospital, where she broke her shoulder falling out of
bed.

“It was a bad time. We were told she would never

walk again, never do this, never do that. We had a lot

of help from social services in finding her a place. The first
place proved unsuitable, but the next was superb. She
couldn’t have had better care. But social services made it
clear there was no chance of any funding. Mum had her own home.

“We sold her home for £120,000, and we put £100,000
into a fund which was intended to provide the income for her care,
but which lost about 60 per cent of its value because of the crash
in the stock market. We started off paying £340 a week, and it
went up to £395 a week. It cost about £20,000 a year.

“The assessment [for free nursing care] was a waste of time. She
was put in the middle band [about £70] along with everyone
else. People in the early stages who could still do most things for
themselves were put in the same band as people like my mum, who was
bedridden and had to be encouraged to swallow. Then the management
of the home refused to have anything to do with the free nursing
care bit, because they didn’t want to have to pay the set-up
costs. That went on until January 2002. Mum died in the March.

“I fought so many battles over the whole thing. She was a real
fighter, and I felt I had to fight on her behalf. But little people
have so little weight. I just hit a brick wall, again and
again.

“Alzheimer’s is a disease and it needs health care. The
distinction between health and social care is so meaningless.

“What infuriates me is that she had to pay for every bit of
health care that she received. She was always quite careful with
money. She saved and yet she ended up paying for all the care that
she should have had free from the NHS.

“And on top of that, she was still paying income tax on her
small teacher’s pension.”