Trouble ahead

Services for people with dementia are
suffering as homes close and recruitment problems mount against
the background of an
ageing population. Ruth Winchester reports.

One in 20 people aged 65 or over, and one in
five people who reach 80 will get dementia of some form. As average
life expectancies increase, more people are going to see their 85th
birthday than ever before. So it makes sense to have services in
place that can give people with dementia the best possible care and
the best possible quality of life.

Unfortunately, if you’re one of
the 700,000 people in the UK who are currently suffering from
dementia, the chances are that you aren’t getting either. While
there are undoubtedly areas of excellence in dementia care, they
are relatively few and far between. Friends and relatives complain
bitterly of “warehousing and containment” of their loved ones, a
worrying reliance on neuroleptic drugs to keep people quiet and
immobile, and deeply disrespectful and sometimes abusive behaviour
from care staff. Many also feel they have been the victims of a
lack of training, understanding and humanity from a range of
professionals, from GPs to social workers, home helps to care home
managers.

Most
observers agree that a major problem is looming. Large numbers of
nursing homes are opting to close or to stop accepting local
authority-funded residents because, they argue, the fee levels make
it uneconomic. Good dementia care is unavoidably expensive – it
demands a lot in terms of the quantity and quality of care staff,
and of the care environment itself. So if it is uneconomic for
homes to care for people with moderate support needs, it is doubly
uneconomic for them to provide a service to people with dementia
whose care needs are significantly higher but who very often do not
bring correspondingly higher fee levels with them. As a result
there is now a severe shortage of both specialist dementia care
beds and beds in more generic services in many parts of the
country. This impacts both on choice and, potentially, on the
quality of what provision remains.

This
problem may have been compounded this year by the advent of the
National Care Standards Commission. According to Frank Ursell,
chairperson of the Registered Nursing Home Association, the NCSC
has made “a pig’s ear” of re-registering nursing homes. Under the
Registered Homes Act 1984 nursing homes were able to care for
anyone who wasn’t being detained under mental health legislation.
But the new classification codes under the Care Standards Act 2000
mean a general nursing home, categorised as just “OP” or old
people, can’t take anyone with dementia. Ursell points to some
areas of the country where all existing nursing homes have been
designated OP – these areas potentially don’t have a single nursing
home registered as being able to care for people with dementia. And
since the Alzheimer’s Society reckons that around three-quarters of
people in nursing homes already have Alzheimer’s disease or another
form of dementia, this could lead to something of a
problem.

But
despite the problems faced by some nursing homes, perhaps the
NCSC’s approach is right. Generic care homes are arguably a poor
substitute for specialist dementia care schemes where staff should
have a broad understanding of dementia and be trained to handle
patients safely and considerately.

Gary
Fitzgerald is chief executive of Action on Elder Abuse. He points
to evidence from their helpline that suggests that if mentally
alert older people are vulnerable to abuse, anyone with dementia is
more so. He cites examples of disrespectful behaviour such as
leaving people naked or semi-dressed for very long periods,
straightforward neglect such as the failure to empty a catheter,
and examples of long-term abusive neglect where horrified relatives
have had to call ambulances for older people because of gangrenous
bed sores. And, although registered nurses can be struck off for
this type of abuse, Fitzgerald argues that there are far fewer
sanctions against care staff who can, at present, simply disappear
and get a job somewhere else.

Another big issue lies around the
inequity of free nursing care. The Alzheimer’s Society points out
that if someone with terminal cancer needs 24-hour care such as
feeding, toileting and cleaning, they will get it free. Conversely,
someone with dementia – also a terminal disease – who needs exactly
the same care will have to pay for most, if not all of
it.

The
society blames the government’s criteria for free nursing care,
which it says are so narrowly defined that virtually all dementia
care is classed “personal care” and hence charged for. Only care
provided by a nurse is free. With specialist dementia provision so
patchy and quality of care so variable, relatives’ choices are
limited. Many families feel they have little option but sell homes
and raid savings to pay between £450 and £650 per week
for the care someone needs.

The
problem, reiterated again and again, is that care of older people
is underfunded. We expect looking after older people to be cheap,
and it is not. According to Martin Green, chief executive of
Counsel and Care: “Older people’s services are underfunded
generally, and dementia services need significantly more resources
to deliver quality care. There is a real problem with finding
sufficient staff, and there needs to be a recognition that dementia
care is an extremely difficult job to do well.”

Green
speaks for many others when he says: “The answer is more resources,
and a 10-year plan that will deliver enough trained staff – there’s
a very long lead time on this.”

Training is perhaps the crux of
the matter. Caring for people with dementia demands high levels of
skill and sensitivity. There is still evidence that GPs are
routinely failing to diagnose dementia, often because of ignorance
of the disease – families are regularly told that early signs of
dementia are “just old age”. Staff in residential care homes and
home care workers are also being expected to care for people who
may be frightened, aggressive or unpredictable, without adequate
training. The fact that many workers do manage to provide adequate
and even excellent care is admirable, but specialist dementia care
training would help ensure that this was universal, rather than
“the luck of the draw”.

The
other answer is a change in attitudes. According to Green: “Older
people need to be seen in terms of their entire mental health needs
– there’s an assumption that being sad and lonely in old age is
normal and acceptable. We should be looking at the clinical mental
health needs of a 90 year old in the same way as we would at those
of a 20 year old.”

This,
it seems, is very often not the case. The government has put much
emphasis on rehabilitation and intermediate care services for older
people recently, but many of the schemes providing these services
exclude anyone with dementia. And, while people with dementia can
often manage at home in their familiar environment for years, a
short stay in hospital for a minor complaint can be so confusing
and frightening that many never go home again. These people are
likely to benefit from avoiding hospital admissions.

Dementia facts

– More than 700,000 people have dementia in
the UK

– Of these, 18,500 are under the age of 65

– 55 per cent of people with dementia have
Alzheimer’s disease.

– More than a third of people with dementia
live alone.

– 18 million people globally have dementia –
nearly three-quarters of them live in the developing world.

– By 2025 the number of people affected will
be nearer 34 million.

Source: Alzheimer’s Society