Confusion about Confusion

I have hesitated before writing anything on the subject of dementia because it is such a complex medical area with widely different levels of knowledge among clinicians and health care professionals.  In terms of the numbers of people affected, it is probably the greatest challenge facing our ageing population, not just because of the huge scale of the issue, but also because of the lack of strategies for addressing the problem which vary from a degree of enlightenment to groping in the dark.  For the sufferer dementia brings a baffling decline into an unknown and unknowing world.  For their relatives it brings an often devastating and stressful period of bereavement before death, as a cherished personality deteriorates before their eyes.

This is not an easy subject and there are certainly no simple solutions.  The field is full of uncertainties and in some cases miss-diagnosis.  This in turn can lead to miss-information and in many cases mistreatment.  I write not at all as an expert but as someone with some experience.

In 1986 I was involved in commissioning a nursing home which specialised in dementia.  What an eye opener that was.  I had no idea how devastating dementia could be on the individual and their family.  That might sound naive but patients suffering from the later stages of this condition are either locked away in an institutional environment or left alone and isolated in the protective custody of a loving relative.

This first nursing home – Newfield House in Coventry – was held in the embrace of our early ideals of individualised support.  We had a strong, highly committed and newly enthusiastic staff team, most of whom were liberated from a much more institutional NHS mental hospital regime.  I don’t say this to be critical of the NHS; they were sponsoring partners with us in looking for new ways to care for people with memory loss.  The staff brought with them years of experience – one third of them were qualified mental health nurses.  One of the first things they did was to significantly reduce many of the drugs residents had been prescribed, particularly sedatives which were more used for containment rather than treatment.  This often made caring for residents more demanding but importantly it released people to be themselves.  It gave staff the opportunity to find out about the residents and often explained why they behaved the way they did.

To do this job, good staff have to have patience beyond belief, to constantly answer the same questions over and over and to creatively divert anxiety into a new and positive interest.  We have come a long way since those early days and idealistic ambition, and some 30 years and much experience later, at least given us insights into more hopeful ways of caring for people with memory loss.

A cure still remains elusive and positive therapies are unaffordable for the majority of sufferers.  Sadly, many people still sit in the same chair every day isolated in their own lost world.

What prompted me to write this blog was an article in the press last week that “walnuts can cure dementia”.  Then this week I learned that “stopping eating cake can beat dementia”.  No doubt behind these overly simplistic headlines lies some serious research, but newspaper sub-editors do a cruel dis-service to sufferers and their relatives by trivialising the research and by raising false hopes in this most serious of issues for older people and society as a whole.

I must thank Professor Brian Lomax, a Psycho Geriatrician from Leicester for first giving me an insight into this subject.  The heading of this blog is the lecture title he gave 30 years ago and yet it would still be appropriate today.

I will write more on my experience of this subject in the months ahead but first I would like to hear from both professionals, carers and sufferers.  Perhaps together we can build a more constructive way forward ?


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