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Creative Spaces - dementia and environment

When the drugs don't work

Lars Stenberg, Sensory Trust

A recent review [i] ordered by the Department of Health in the UK on the use of anti-psychotic drugs on dementia sufferers states that as many as 144,000 people are being given the drugs unnecessarily. The report, authored by Sube Banerjee, professor of mental health and ageing at the institute of psychiatry at King's College London, reveals that excessive use of the medication causes an estimated 1,800 deaths and almost as many strokes among older people every year.

The drugs, used as “chemical restraints”, are given to people with dementia in care homes in order to reduce common behaviour patterns such as wandering, shouting and repeated questioning which make it difficult for staff to maintain an orderly and calm working environment. Anti-psychotics for older people? Like failed anti-histamines that made you too drowsy repositioned in the market as “sleep aids”, could this possibly be a re-branding of a drug based on a market gap rather than efficacy? Surely not! But wait, this isn’t a Big Pharma rant.

The care services minister, Phil Hope, accepted all the recommendations in the review and promised a fundamental change in the treatment of those suffering from dementia, however it seems that the focus will be on monitoring the use of the drugs, rather than real fundamental changes. This is unfortunate and a missed opportunity as the issue here is not more appropriate administration of chemical restraints.

Care homes are often places unlike anything that we have lived in before. Efficiently medical, the environment offers few cues to engagement, fewer clues to the activities we might perform as residents. Small wonder that folks are found to be shouting, questioning and wandering. Where’s the kitchen? Where’s my armchair? Why can't I make myself a cup of tea? The environments do not cause dementia, but I would like to see a study to plot the rate of deterioration in residents versus folks living “on the outside”. Morgan Spurlock, the maker of Super Size Me, should spend a month living in a care home and measure his grip on reality. There has to be a movie in there somewhere.

The issue is that too often the environments we end up in as we get older contain no emotional meaning for us. Why should that matter when many people believe the focus ought to be on medical care? Emotional meaning is held in a part of the brain that is one of the last to be damaged by dementia. Dr. John Zeisel who runs a care home network in the United States, writes that those living with dementia can still connect to the world around them, and those who love them, through art, music, touch and facial expression. According to Dr. Zeisel building care home environments that support a life with emotional meaning has been proved to be at least as effective at reducing stress and anxiety as the anti-psychotic drugs. And of course in the long term it may also prove to be cheaper.

Dr. Zeisel is one of the consultants on the Creative Spaces project. Run by Sensory Trust, the project brings people with dementia back together with members of their community to redesign the outdoor spaces in care homes run by Cornwall Care in the UK. This three year project seeks to create meaningful outdoor, semi-public spaces around care homes and to give residents the chance to reconnect emotionally both with the environments and with the community.

One in three of us will die with some form of dementia, and those with dementia live on average for four and a half years with the condition [ii]. If the creation of more meaningful environments can improve the quality of life for those with dementia, their families, carers and staff, surely that is the fundamental change we should see in care provision?

I’m Still Here : A Breakthrough Approach to Understanding Someone Living with Alzheimer's – John Zeisel
Inquiry by Design – John Zeisel
Alzheimer's statistics


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