My father is 84. He looks much as he did 20 years ago,
except his beard had to go because it proved a trap for food
when he was being fed. Last week the barber he had visited
for years, but whom he no longer recognises, shaved his
cheeks bare - another small but necessary indignity that
visibly marks the loss of his identity. One pitiful
consolation is that he won't remember.
My dad spent a lifetime in love with language - esoteric
meanings, puns, poetry, jokes (often very blue), plus his
own set of catchphrases that, just occasionally, could
grate. How we long to hear them now. 'I've had an elegant
sufficiency,' he would say with a flourish at the end of
every celebratory meal. Now, he says little. He smiles
occasionally as if to signal that his sense of humour,
always strong, will be the last part of him to die.
In addition to his mother tongue, Welsh, he could speak
Spanish, English and Italian, and had a good go at Urdu,
Korean and Greek. In his seventies he had begun to teach
himself Russian. He loved to play with words - a pleasure
perhaps particularly common among those who left school
early after a hard childhood - and developed a voracious
appetite for learning.
My dad had an active brain. After the Navy, his job as a
Morse code operator with the Foreign Office took him around
the world. He mixed with bullfighters in Spain; learned to
fly Tiger Moths and rode horses with friends in the
Pakistani army in Peshawar; sailed on the Nile with a CIA
'adviser' in Sudan; and took up golf in Korea.
My parents' house overflows with his hobbies: stamp
collecting, photography, history, gardening, metal
detecting. There are the remnants of a domestic distillery
that for years kept the neighbours happy; and, of course,
the teach-yourself-Russian tapes. All that cerebral
activity, however, failed to inoculate him against the
plague of the over-eighties. My father was diagnosed with
Alzheimer's disease earlier this year, as was his sister,
Megan, now 88, several years before.
Nothing special in that. Theirs is a common story for
octogenarians, one in five of whom suffers from Alzheimer's.
The struggle of my mother Nancy, aged 82, to care for my
father, while simultaneously mourning the loss of the man
she married 60 years ago this April, is familiar to untold
thousands of elderly people, themselves fragile.
Their plight is somewhat ignored, since they make few
demands. They are the generation grateful to have survived
the war and reared not to make a fuss, unlike their
children. Besides, to many people Alzheimer's carries a
stigma - another reason to remain in the shadows. According
to one estimate, only 10 to 15 per cent of people with
dementia have had the disease diagnosed. So we have yet to
comprehend fully the unrelenting scale of what is endured by
sufferers and those who care for them. As a result, we also
appear not to take too much notice. At least until,
suddenly, it's not 'old people' with Alzheimer's but our own
mother and father. Or us.
What can we do to help, we who look on sometimes
helpless, often frustrated, as our closest and most loved
family and friends succumb to the illness? Of course, there
are drugs. Thirty studies and half a dozen clinical reviews
provide irrefutable proof that four dementia 'treatments'
help a large proportion of people with Alzheimer's to
function better for a period of time. They also reduce the
destructive processes that kill off the brain cells -
although they would do little for my father.
The drugs cost ?2.50 per patient per day - ?1,000 a year.
That cost can be recouped if the people with Alzheimer's for
whom the drugs work can be kept out of a nursing home for a
month because of improved functioning.
And this is where the problems start. In March last year,
Nice - the National Institute for Clinical Excellence -
announced that it was proposing to issue new guidance to
withdraw all four drugs from the NHS, on the grounds that
they were effective but too costly. Nice, an independent
organisation set up by the government to offer clinicians
and managers clear guidance on the treatments that work best
and on their cost-effectiveness, is expected to announce its
final decision tomorrow.
A public outcry followed its initial suggestion. John
Reid, then the Health Secretary, suggested in an
unprecedented move that Nice might look again at its
original appraisal. Andrew Dillon, chief executive of Nice,
responded: 'We think there is more data which could affect
our decision, and we are asking the drug companies for
access to it.'
A range of organisations, individuals, MPs and medical
professionals pointed out that it was Nice's original 'data'
that was the problem. They charged that it was erroneous,
incomplete and lacked transparency and clarity - some of the
criticisms that the House of Commons Select Committee on
Health had made in a critical report on Nice a couple of
years earlier.
So, has Nice redeemed itself? Tomorrow Nice will publish
its new guidance on the four dementia drugs. Sources suggest
that they will reverse their earlier proposal to strike
these drugs off the NHS list of approved treatments. Instead
they will show that they have listened to the critics and
will allow the drugs to be given to patients who have 'mild
to moderate' dementia. However, it seems that patients with
severe dementia will not be eligible for the drugs. This
will prove controversial, as some psychiatrists felt that
the treatments could really help alleviate some of the worst
symptoms, such as aggression.
'If that is the decision,' says Dr David Wilkinson, head
of one of the first memory clinics in the UK, the Memory
Assessment and Research Centre in Southampton, 'then it's a
great help in one way because it keeps the services alive.
But for some patients, it will mean frustration.'
Nice has a reputation for excellence, although critics
can be scathing. 'The acronym is misleading,' says Professor
Robin Jacoby, emeritus professor of old age psychiatry at
Oxford University. 'I say it stands for the National
Institute for Cutting Expenditure.' The body has to make
difficult decisions conscious of the political demands of
the minister, the power wielded by leading pharmaceutical
companies, and the demands of patients, who have
successfully used the courts to gain access to the expensive
drugs they need.
In that fraught setting, Nice has to come to a decision
about which drugs are both health and cost effective, using
a complicated 'model' - a mathematical system that attempts
to assess price and effectiveness, called a final cost per
quality adjusted life year.
How good a job has it done in the past five years on
weighing the four dementia drugs? Critics say that the
criteria on which Nice assessed the dementia drugs, the
absence of a single representative of old age psychiatry on
its appraisal committee and the opaqueness of its method (at
least a PhD in health economics is required to achieve even
a glimmer of understanding) raises issues about the narrow
way in which 'value' is measured in health economics in the
NHS, to the detriment of the elderly in particular. 'Is it
"worth" the investment? [That] means different things to the
NHS, to administrators, politicians and the punters,' says
Jacoby. 'So, to whom do we listen?'
Another issue is whether Nice, an unelected body which
critics say lacks transparency, is the right arena to decide
who has priority and what treatments are rationed in an
acutely cash-strapped, NHS. In short, the dilemma that Nice
has had trouble in resolving is precisely the one that
society would prefer to avoid - are the elderly worth the
money they require for a life worth living?
Keith Turner, 67, father of four and a diabetic, is a
retired chiropodist. In 2002 he gave up reading because, by
the time he came to the end of the sentence, he couldn't
remember the beginning. 'It was a little bit of a joke in
the family, dad's getting old ...' he smiles. On a routine
diabetes check, his consultant asked if there was anything
else he could do to help. Keith's wife, Lillian, said: 'I
wish you'd give my husband a memory.' An appointment was
made with a neuropsychologist for which Keith had to wait a
year. Eventually, he was diagnosed as being in the early
stages of AD. 'You can't change the rules. You try and make
the best of it,' he says. 'I'd go shopping with my wife. I'd
forget and wander away. She could never leave me. It was a
lot of worry.'
Two years ago Keith was put on Aricept, one of the four
dementia drugs that Nice may propose withdrawing from the
NHS tomorrow. 'I saw an improvement in a matter of weeks.
It's still brilliant. I can drive again; I can remember; I
can hold a conversation; I don't wander away. It's given me
back my life.'
In 2001 Nice was equally enthusiastic. It recommended
that three of the drugs, Aricept and Exelon, introduced in
the late Nineties, and Reminyl, introduced in 2000, should
be used in the mild-to-moderate stages of AD. The brains of
people with AD lack acetylcholine, one of the chemicals
associated with memory, learning and communication. These
three drugs, known as inhibitors, as well as a fourth drug,
Ebixa, introduced in 2002 and used in the moderate and
severe stages of AD, slow the rate at which acetylchline
breaks down.
The drugs work for only around 60 per cent of patients.
They are effective for up to 18 months. The drugs buy time.
'The degree of change varies. It may mean, for instance, a
man can go to the post office and remember why he's there.
It means remembering grandchildren's names,' says Wilkinson.
'It can allow a person to dress himself and cope alone.'
He gives the example of an 87-year-old woman whose
husband was diagnosed with the disease. The woman said her
husband was a good man until he was diagnosed with AD. One
night he woke her and chased her down the stairs, locking
her out in the pouring rain in her night dress while he
screamed 'Whore!' and 'Harlot!'. 'What these drugs can do is
to stop that for a period. For some couples, that extra time
is priceless,' Wilkinson says.
It takes 32 months to acquire a diagnosis for AD in the
UK. In Germany, it happens within ten months. In Italy, 80
per cent of people with AD are offered drugs - here the
figure drops to 20 per cent. Since the new regulations
imposed by Nice, clinics have sprung up that make a
diagnosis quicker while also monitoring the drugs regime and
providing emotional support.
In March 2005, however, Nice suggested that only Ebixa
should be prescribed as part of a clinical trial. Nice
estimated that, if the drugs were no longer available on the
NHS, ?15m would be saved in year one, ?45m in year two and
?60 million in year three.
Carers immediately objected to the way in which Nice had
made its calculations. 'Without Ebixa I believe my wife
would have had to go into a care home 12 months earlier,'
said the husband of one woman receiving Reminyl and Ebixa. 'Ebixa
costs ?132 per month. A care home costs ?400 in England and
?675 in London a week. The drug treatment was more
cost-effective and has helped to retain our quality of life.
It also has the benefit of being available when needed,
which cannot be said of support services.'
The Alzheimer's Society argued that the 'model' that Nice
employs is not able to capture the change in the quality of
life for dementia patients that the drug treatments provide.
'It's a crude tool that measures what's easiest to measure,'
explains Wilkinson. 'It doesn't calculate the impact of the
whole syndrome of the disease.'
Tomorrow Nice reveals if it has listened to its critics.
Will it have reviewed the way in which it calculates
'value', in the context of those with dementia? Will all
four drugs now be prescribed within the NHS, or will new
restrictions be imposed? Soundings suggest that it will give
the go-ahead, but with strict criteria.
At present the only definitive diagnosis for Alzheimer's
is via a post mortem that reveals the holed, cauliflower
state of the brain. When the patient is still alive a
clinician has to make a series of assessments, under current
Nice guidance. They include tests. Central to these is the
mini mental state examination, MMSE. Nice dictates that an
individual has to achieve a score of at least twelve to be
eligible for dementia drugs.
I sat in his surgery while Wilkinson conducted an MMSE
test on a man in his late sixties. I struggled with some of
the questions (count backwards from 100 in sevens)
demonstrating that I have either inherited my father's
disease or, bizarrely, my IQ isn't high enough to
demonstrate that I don't have dementia.
Wilkinson gave the patient, weighed down by a combination
of anxiety, fear and a desire to please, an address and
asked him to repeat it a few minutes later. He failed. He
was shown a picture and asked, within minutes, to list the
contents. He half failed.
The Alzheimer's Society has pointed out that the test,
the key to dementia drugs, discriminates against people
whose first language is not English or who lack the cultural
knowledge or mathematical ability to respond under pressure.
'My mother failed an assessment test, gaining less than
ten points,' says one carer for a 79-year-old with AD. 'She
was very upset and apologetic. Looking back I realise that
she probably suffered from dyslexia . The consultant said he
could not prescribe Aricept any more. I begged him to change
his mind, but he would not relent. My mother went downhill
rapidly after that. About two months later her ability to
converse ceased.'
The months of campaigning to push Nice to change its
appraisal has also focused attention on the grossly
inadequate levels of help for those with dementia and their
carers in some areas of the UK and raised yet again the
issue of who should foot the bill for the cost of adequate
care.
Is it right that in England and Wales, but not Scotland,
the patient with dementia is expected to pay for his or her
own treatment? Are we, as taxpayers, prepared to fork out
more? Would the extra cash make its way to the elderly, when
other demands are pressing and ageism rife?
Health and social care professionals are doing the best
they can, but the lack of resources often means they are
forced to police a brutally inadequate regime of 'support'.
My father had been ill for several months. My mother cared
for him and I, along with my husband, provided weekend help,
although we lived 70 miles away. My dad was incontinent;
awake all night and roaming. He was difficult to wash and
dress .
A well-meaning social worker said my mother could have
half an hour of help in the morning and night. If any task
was not achieved in the allotted time, the staff would have
to leave. My mother could also have stair rails. A day
centre was arranged for one day a week. More time was
unlikely because of the length of the waiting lists.
My mother stayed up all night for fear that my father
would fall down the stairs in his wanderings. She weathered
his delusions with the support of an inspirational community
psychiatric nurse - who came once a week. But without
sufficient help, my mother too has buckled.
In 2003, 2004 and 2005 a succession of investigations,
including those by the King's Fund and a coalition of
charities involving Age Concern and Help the Aged, said
that, in spite of a series of government initiatives,
advocating independence and high-quality care, in practice
services for the elderly are in crisis. The old are being
robbed of their resources.
Although two-thirds of those who receive local authority
help are elderly, they receive under half of the funding.
The money is 'creamed off' for families and children on whom
a much brighter spotlight is trained. The coalition's
chairwoman Annie Stevenson said last year: 'Older people are
paying for inadequate social care funding with their own
mental health, physical health and dignity.'
My father has suffered a series of small strokes and is
now receiving good care in an NHS psychiatric ward. We are
fighting to keep him within the NHS system because he is ill
and it's his right. 'He's paid taxes since he was sixteen
and never claimed a penny in benefits,' my mother says. 'Why
should he pay for his own care now that he's ill?'
A cost-effective manifesto for those with dementia would
include access to Alzheimer drugs within the NHS with
clinical judgments on who needs them left to GPs and
specialists. There should also be adequate support in the
home for people with dementia and, crucially, their carers,
and decent standards in nursing homes, financed out of
taxes.
I know it would be expensive. But as the cases of
Alzeimer's increase and the number of elderly increase, it
is important that we make the decisions to support the
sufferers and those that care for them. If my dad could find
his voice again, I think that he would agree.
Home
Page
![[t3 home]](../t3fs/top_banner_MAIN_r2_c02.gif)