Dementia sufferers deserve better treatment

The abuse of those suffering with dementia has come under the spotlight recently with first the revelation of the over subscribing of anti-psychotic drugs to elderly people and then that those with dementia are not receiving the treatment they deserve when in hospital.

A report from the Alzheimers Society has found half of all dementia patients leave hospital in a worse state than when they arrive and that they stay in far longer than others coming in with similar conditions. The Alzheimer's Society blames longer stays on a lack of communication, which can exacerbate problems associated with dementia, such as incontinence. The main reasons for a hospital stay were falls, broken hips or hip replacements, urine infections, chest infections and strokes.

Meanwhile, an independent review for the government found that 180,000 people with dementia are being prescribed a powerful cocktail of sedative drugs of which more than three quarters - 144,000 – are being prescribed inappropriately.

The drugs are estimated to cause 1,800 deaths and 1,620 strokes a year but despite warnings about the risks prescribing has continued. There are 700,000 people in Britain with dementia, of which half suffer with symptoms of agitation, aggression wandering shouting and other difficult behaviours.

As the son of a father who suffered with Alzheimer’s disease I have had first hand experience of how staff in care homes seek to control patients. When my father became unmanageable for my mother at home he went into a residential home. This home was unsuited to deal with dementia, so after a period in hospital he went on to a home that was more specialized in dealing with dementia patients. As things declined, he then moved a third and final home. The second home felt it was unable to cope with his increasingly agitated behaviour.

There was a perceivable change in Dad after the third home. He went from being alert to very drowsy. This was all the more perplexing, given that the manager of the home had sold the move on the basis of being able to stimulate and get better responses out of Dad. I became increasingly suspicious that Dad was being drugged and raised the issue with the manager. He acknowledged my concerns and said he would review the drug dosage.

This experience and others also underlined the importance for dementia sufferers of having an advocate to stand up for their interests. In many cases, dementia sufferers can be as vulnerable as babies. They are open to abuse at almost every turn so there is a need for someone to stand up for their rights as well as proper stringent regulation. For those without advocates, the abuse endured can no doubt be truly horrendous.

The other side of this story was that Dad could get quite aggressive. Despite being a shadow of his former self he retained a lot of upper body strength and when he started throwing his weight around the care assistants struggled to cope. On one occasion, a care assistant touched him on the head and he jumped up but my brother was present and managed to restrain him. Just prior to his death, I was in the room as care assistants edged round him, one declaring, and “I don’t want to get hit.”

Care homes that house dementia patients are not always nice places. There are no inhibitions with patients often screaming out or suddenly launching off towards a complete stranger. The occasional one will come and confine they think their own family is robbing them, sometimes. So given the circumstances it is possible to have some sympathy for those in the homes who resort to drugs by way of restraint. However, as the review points out it is not acceptable practice.

The government is now moving to impose long overdue regulation on the sector. There is to be investment in specialist dementia training with a new national director of dementia overseeing a reduction in the use of the anti-psychotic drugs. While this may reduce the use of the drugs it does not address the fundamental problem of how dementia is dealt with in the UK.

The problem is that dementia sufferers are farmed out to privately run homes, whose primary motivation for existence is profit. This means that most of the staff are on the minimum wage, many are migrant workers who are more easily exploited. In the worse case scenarios, these homes are warehouses of death, simply storing elderly dementia sufferers, while making money at their expense until death strikes.

Each dementia sufferer is no doubt viewed as a profit centre. This was underlined with in own father’s case as the extras beyond the £700 a week we were already paying for care began to roll in. One of the more amusing exchanges was over the exorbitant monthly charges for haircuts. My own plea was that Dad was having more haircuts then than at any other point in his life. “He’s having more hair cuts that I am and he only has about 100 hairs,” I said.

It is the precedence of profit over care that really needs to be addressed if dementia sufferers are to start receiving the care they deserve in a civilized society. The use of the “chemical cosh” is to a large degree symptomatic of the make a profit out of suffering culture that exists when it comes to the treatment of old people.

The whole attitude needs to change. There needs to be a more holistic approach taken to dementia sufferers, seeking to stimulate the senses rather than simply dull them. The new regulations are welcome but can only be a start. As the number of dementia sufferers continues to grow over one million in the next decade this is a problem that needs addressing now. The present approach is in many cases inhumane and a sad reflection on our society that seems to put a very low value on sanctity of life.

Other articles by Paul on dementia -http://www.churchtimes.co.uk/content.asp?id=81949
www.newstatesman.com/society/2008/08/dementia-case-loved-dad-family
www.thetablet.co.uk/goprev.php?issue=1000107