For many of us, there's little more bleak than the prospect of Alzheimer's
disease - it's that idea of the loss of self that is so frightening. Yet a
new study turns on its head the assumption that a good quality of life ends
once Alzheimer's and other forms of dementia take hold. Not only does it
indicate that those affected can lead fulfilling lives, but that there's
something that will make happiness almost guaranteed: keep up the social
life.
The study, from University College London published in the Journal of
Neurology, Neurosurgery & Psychiatry, is one of the first to ask people
with dementia directly about their feelings over time, to try and gauge
their quality of life.
Dementia is the accelerated loss of brain cells, usually due to a disease such
as Alzheimer's. It affects 750,000 people in the UK. This new study comes at
a time when news stories about the need for treatments, and the decline of
high-profile figures such as Iris Murdoch have consistently painted a
picture of loss. Baroness Warnock, an expert in medical ethics, has
controversially proposed euthanasia for dementia sufferers because of the
strain they put on their families and public services.
But Cornelius Katona, a leading expert in old-age psychiatry from University
College London's medical school, believes we should pay more attention to
the factors that can make a difference to the lives of people affected by
this potentially terrifying condition. And his research suggests that if we
make sure the right activities and environments are available, we can give
people with dementia a good quality of life without searching for elusive,
expensive drugs.
“If you work clinically with people with dementia, you aren't usually struck
by how distressed and miserable they are,” Professor Katona says. “People
with dementia generally rate their quality of life highly. That was a
starting point for our research. We also suspected that the traditional
ideas of what it meant to age ‘successfully' - avoiding ill-health, poverty
and other adversity - were flawed. Actually, avoiding adversity isn't
necessarily the key to being satisfied with life as you get older.”
The new study focused around interviews with 224 people with mild, moderate
and severe Alzheimer's, but its results apply to all forms of dementia. The
interviewees were assessed to ensure that they could give meaningful answers
and asked questions using standard health status, cognitive impairment and
quality of life questionnaires. These indicated how happy they were with
their life, and also how well they were mentally and physically functioning.
The researchers went back after 18 months, and asked the same questions. The
resulting analysis looked at who had declined most physically and mentally,
and who had stayed happiest. It came up with some fascinating results.
Those with the best relationships fare best
Generally, those affected by dementia - whether it be severe or mild - didn't
experience any decline in their sense of wellbeing over the 18 months, even
though an objective assessment might have noted one.
And those with the highest sense of wellbeing were also those who scored
highest on “social relationships” measures - how many people they regarded
as close, how often they saw them, and what the relationships were like.
People who had the best relationships were the most happy, and stayed happy
longer. The results also showed that the happiest people were those who
hadn't any indication of mental health problems such as anxiety and
depression at the onset of Alzheimer's. This, says Katona, indicated that
they were ageing “successfully” - despite their decline in cognitive
function. It means we should be careful not to judge a decline by our own
standards, rather than their own.
“When you compare how a carer rates the quality of life of someone with
dementia with how the person with dementia themselves rates it, then you
find the carer always rates it lower. This is all probably related to the
carer's own susceptibility to anxiety and depression, because their lives
are so stressed.”
A study published in the Journal of International Psychogeriatrics last month
found that one in four spouses of people with dementia was suffering from
clinical depression.
Since conducting the study into Alzheimer's, with UCL's Professor of Mental
Health Sciences, Gill Livingstone, Katona has conducted a larger study into
what predicts good quality of life as we age generally. Again the factors
are your previous state of mental health, and how socially engaged you are.
“The real point of this is that there's something you can do,” Katona says.
“If we're going to prepare for an ageing population, with a higher
proportion of people with dementia, we need to tackle anxiety and depression
better whatever age it strikes. And we need to facilitate social networks in
middle and late life, before people start becoming more dependent.”
For those of us worried about ageing, the lesson is to make sure you don't
become socially isolated in mid to late life. And address any problems you
have with anxiety or depression - talking to your doctor is a good start.
For those caring for people with dementia, the message is more complex: you
can't change someone's history of mental health, and dementia is, by its
very nature, an isolating condition. When people no longer behave in a
socially acceptable manner, getting out and meeting people - or even having
visitors - can be problematic. But local groups, such as those run by the
Alzheimer's Society, can provide a continuing opportunity for a social life
and for people to talk about their illness by phone or in person.
Professor June Andrews, Director of the esteemed Dementia Services Development
Centre at the University of Stirling, says the new research is a welcome
recognition that dementia is not the sentence to distress and misery that
it's made out to be - and that much can be done now to improve the
experience of people affected, without wonder drugs.
“What people need, if they're to cope, is not a pill but to get out,” she
says.
James McKillop, aged 68, from Glasgow, agrees. In fact, a diagnosis of
dementia in November 1999 changed his life for the better. For years before
that, he'd been depressed. Things kept on going wrong in his personal and
work life, and he didn't understand why. In 1995, he'd had to give up his
Civil Service job because he was forgetting how to do routine procedures -
things that he'd done week-in, week-out for the past 25 years.
“In the end, I couldn't cope. I became a hermit, staring at a blank TV screen
all day. I'd become more and more frustrated, unable to make head or tail of
what was happening, and I gave my wife and family a really miserable
time.But receiving a diagnosis of dementia changed everything because I
realised I was at fault and they realised I was ill.” McKillop believes that
he has a better quality of life now than before the diagnosis. “I have met
so many wonderful people who have enriched my life. I wish I had developed
dementia many years ago.”
And so what is the advice for people with dementia, and their families?
It is vital that family members act early
It's essential to identify the first signs of the disease early, so family
members can discuss how to keep social activities and ties going. Another
area to consider is starting a life story book (see box left) - a detailed
record of a person's past life which they keep with them, so that even when
they're in an environment (like a home) where they're not well known, there
are prompts to start conversations and possibly a relationship.
And does Katona have any specific suggestions for activities that might stand
people in good stead if they develop dementia? Something, even, that the
Government might prescribe in the absence of wonder drugs?
“It's all about keeping active socially as well as physically. Something like
ballroom dancing seems to be especially beneficial, because as well as
giving people a good cardiovascular workout, it provides a social network.
So, if you're in your fifties or sixties, I'd recommend people should start
that.”
A government dancing czar then? Step up Bruce Forsyth.
What carers can do
Stay in the loop People with dementia champion the importance of an
active social life. Physical activity is also important for staving off
depression. Contact your local community centre for information on events
and groups.
Keep in touch A card, a call or a visit mean a lot.
Look on the bright side Focus on what a person can do, not what he or
she can't.
Offer specific help Tackle something on the “to do” list.
Out and about Plan a visit or a daytrip.
Make a life story book These are a combination of a scrapbook and an
annotated photo album - providing an account of someone's life, and an easy
conversation-starter. Caringmemories.net
make customised life books.
For more information log on to alzheimers.org.uk
; helptheaged.org.uk
