Dementia

The following essay is about dementia. One day in his nursing home room, because of the effects of Alzheimer’s Disease, my father said “silly island” in an attempt to express himself. I don’t know what he meant to say but at the time these two words seemed to sum up the deep misery of dementia.


Silly Island: Dementia and Nursing Homes

When someone you love is suffering from dementia (meaning irrationality), your world is turned upside down. Watching a precious family member drain away bit by bit is almost impossible to cope with until you stop trying to approach it logically. While we watch, the strong become dependant, weak, silly and helpless. They are marooned. The once keen, sharp mind is sick because the brain has been damaged by clumps of protein plaques and tangled fibres that progressively destroy nerve cells (Alzheimer’s Disease).

Relatives of dementia sufferers, who are suffering too, are forced to formulate unprecedented thoughts to help them cope. Many clutch at straws to ease the hurt. They tell themselves that the person who brought them up, the person they’ve been married to for 50 years, the person who was once so talented, endearing and dedicated to family life is now so mentally impaired that he or she doesn’t experience indignity, or feel the pain of separation from relatives and close friends.

My father passed away in 2007, my wife in 2008.

My father passed away in 2007, my wife in 2008.

Those with dementia don’t realise they’re talking gibberish and wearing nappies. They don’t know they’re using language that’s out of character. They don’t know why they shouldn’t urinate on the floor. They don’t realise they have been abusive to staff or relatives or other residents. They’ve forgotten where home is yet some of them continually want to go there. The loss and wretchedness can’t be measured.

There’s nothing you can do to make sense of finding your father standing alone in a nursing home room half-naked after soiling himself. No one can never fully come to terms with this, or with having to wash and shave his face, clean his teeth, comb his hair, feed him slices of fruit and cheese and cut his toenails. Relatives must be stoical. Many of them learn through hard experience that  mere positive thinking is no weapon against their sense of helplessness.

It’s impossible to accept that your father can’t remember your name or doesn’t know who you are. The pain is eased a little by the unwanted familiarity that comes with routine and the passing of time. Mostly you simply desensitise yourself by refusing to dwell on it. Structured thinking is out. To be honest, on those few occasions when I really thought it through as far as I could I became too upset. But worse was to come.

It was so hard having to leave my clothes close by the bed just in case the nursing home phoned in the middle of the night with bad news.

My father died in March 2007. He was ten times the man I am. Ten years later I miss him terribly.

Step Into Another World

It’s all too easy for relatives to be unfairly critical of nursing homes. We can all live with attempts at keeping up appearances, especially at announced inspection times. Some of us encounter cheesy promotional spiel that would be better suited to a car salesman, but the shine will wear off. It’s best to simply focus on the facts and gauge standards as best we can. But a few steps beyond the garden flowers and plush foyers bring us into an unpleasant environment, with very disagreeable sights and smells.

Sometimes things aren’t what they seem and stressed relatives and visitors can quickly jump to wrong conclusions. Just because we see an old person lying helplessly on the floor doesn’t mean she’s neglected. In the dead of winter an elderly frail man sitting in the corner fast asleep with is bare feet on the cold floor doesn’t necessarily mean he’s been overlooked. He may have resolutely resisted all attempts to have his (or somebody else’s) socks put on.

Part of the problem is this: there’s a lot of potential for ambiguity in nursing homes. It could be argued that this is particularly the case with EMI care (Elderly Mentally Infirm). After all, human nature being what it is, the neglect of the elderly can sometimes be explained away quite easily. A bothersome resident may be put in a large low chair he can’t get out of simply to keep him out of the way. We would like to think that he’s there because it’s more comfortable and appropriate. Our loved ones may occasionally be sedated because it’s in their and other residents’ best interests. However, there’s plenty of ongoing evidence (see below) to suggest that sedation is regularly used excessively or just to make the carer’s life significantly easier, and this is plainly wrong.

Around the world the abuse of the elderly in nursing homes is depressingly common. Research shows that there are regular reports of malnutrition, “chemical straightjackets” (The Sunday Telegraph), physical attacks, outright cruelty, toileting neglect and theft.

The sedation of residents causes a lot of concern. Nursing home staff may need to use calming drugs to control problematic or aggressive behaviour. It may take time to discover how much medication to give and what works best for whom. Relatives appreciate that this is unavoidable but may also question how much is too much. They have every right to speculate about possible selfish motives for the sedation of dementia sufferers.

“…many patients are still being drugged into a stupor just to make them easier to care for” (The New York Times).

“A report by the Liberal Democrats suggests residents who do not need these drugs are being kept sedated to make life easier for staff” (BBC news item).

“More than one in 10 residents of nursing homes and long-stay units for the elderly are receiving inappropriate medication to deal with the symptoms of dementia, new research has found” (The Irish Times).

“The over-prescription of medications, particularly of anti-psychotic medication for people with dementia, is sometimes used in the care environment as a tool for managing service users and ensuring that the care of people with dementia is easier for the staff” (Irish Women Lawyers Association, Law and the Elderly).

“People with dementia are too frequently given powerful sedative and antipsychotic drugs which make life easier for care staff” (Harry Cayton, formerly Chief Executive of the Alzheimer’s Society).

“The use of powerful sedatives continues to blight the lives of people with dementia. They reduce a person to a state where they lose what minimal control they have over their daily lives. Neuroleptics are frequently prescribed to people with dementia without explanation of the consequences, or consent from either them or their carer” (Andrew Chidgey, Campaigns Officer, Alzheimer’s Society).

“Anti-psychotic drugs can double the risk of death among Alzheimer’s patients given the medicines to prevent disturbing and troublesome symptoms… resorting to the medications to treat Alzheimer’s is controversial. Studies have shown that the practice is associated with a range of serious adverse conditions, including Parkinson’s-like symptoms, accelerated mental decline, and strokes. Taking the drugs for several weeks also appears to increase death rates among Alzheimer’s patients” (The Press Association, 2009 report).

“…a three-year study published in The Lancet Neurology reports a doubling of the risk of early death in those on the drugs long-term. As many as 100,000 people in UK care homes with dementia are routinely prescribed anti-psychotic drugs for aggressiveness or agitation… There was a significant increase in risk of death for patients who continued taking anti-psychotics during the course of the study. After two years, 46% of patients treated with anti-psychotics were alive compared with 71% on the placebo. Three years after the start of the study, fewer than a third of people on anti-psychotics were alive compared to nearly two-thirds taking the placebo. ‘We must avoid the use of these drugs as a potentially dangerous ‘chemical cos’ to patients who would be better off without it’ (Rebecca Wood, Alzheimer’s Research Trust).” (Taken from a BBC News Report.)

Relatives should express their concerns quickly if they are convinced loved ones are unreasonably sedated, but it’s easy to be too judgemental. Residents may appear to be stupefied. They may be unable to walk or even stand. They may have difficulty keeping their eyes open. Too much sedation is the likely cause, although illness can result in similar symptoms. It’s best to voice your concerns.

Senior staff and down-to-earth carers in nursing homes can be very helpful, but it’s best to keep in mind that you’re dealing with a profit-making business that’s understandably concerned about its reputation in the local community. Should we expect nursing home managers to quickly hold up their hands and come clean about isolated incidences of serious malpractice or when significant mistakes are made by staff, especially when they know it’s extremely difficult for outsiders to uncover the facts? In a sense each nursing home regulates itself on a day-to-day basis, so ultimately we rely on honest staff, thorough independent studies and more stringent inspections.

While I have a lot of genuine admiration for dedicated professionals working under very difficult and unpleasant circumstances, my countless daily experiences with several nursing homes over a 7-year period have left me rigidly sceptical. Sometimes there seems to be a reasonable explanation for just about anything. If only all nursing homes were so squeaky clean. Emotionally drained relatives are often left with no other choice than to hope for the best and lean somewhat reluctantly on the professionalism of staff. Clearly the ravages of old age are tough on everybody. It’s true that dedicated, reliable staff doing stomach-churning work during long 12-hour shifts may feel like they aren’t appreciated, and some negative criticism is unquestionably unfair.

Loving Support and Professional Care

But a nursing home can’t provide loving care. We shouldn’t expect it to. Sensitive relatives will care from the heart, not mechanically as part of daily occupational routine. Many of those who work with vulnerable people have to exercise professional detachment to protect them from the stress of sympathetic emotions. For some this mental juggling is surely difficult. We feel for them. Nevertheless, how many professionals working in nursing homes are unreasonably impersonal, too detached and even careless? Is there evidence for it?

Too many bad experiences will eventually condition relatives, but this shouldn’t surprise anyone working in a nursing home. Suspicion and distrust will surface from time to time and it’s understandable that senior staff will be very keen to keep a lid on any discontentment. But sometimes, rightly or wrongly, relatives feel fobbed off. A lot depends on how each home is managed and how forthcoming the staff is. Let’s face it: nursing homes have a questionable reputation in modern society. I know of those who were so shocked at the treatment of loved ones that they had them transferred to other nursing homes.

There are levels of annoyance. Many minor difficulties pile up into quite a heap but don’t seem to register with staff. As a family we have wondered why we are usually responsible for shaving, cleaning teeth and cutting nails. We understand involvement can be rewarding but where do we draw the line? We were frustrated when qualified nurses repeatedly put a hearing aid in upside-down and back to front. It’s uncomfortable that way. They get destroyed in washed clothes and even disappear off the face of the earth.

Why does excrement go unnoticed long enough to dry solid on floors and doors? Why did 11 pairs of socks with name tags disappear? Why was my father wearing a woman’s vest? Why was there a skirt in his wardrobe? Why had large bruises gone unnoticed? Why did it take over 20 minutes for staff to answer an accidental call from my grandmother’s room? (I deliberately waited to see how long it would take.)

And more seriously, we weren’t at all surprised to learn that my grandmother had broken her shoulder despite confident assurances from a senior nurse that she was fine. We were dismayed to learn she had been verbally abused and relieved that the member of staff responsible was rightly dismissed the following day. We were at a loss to understand why she was left sitting alone in a chair in the middle of her room when staff knew very well she had great difficulty walking but tried repeatedly. We were outraged when we learned how poorly my grandfather was cared for in a nursing home. One evening senior members of my family demanded a wheelchair and brought him back home without any discussion with staff.

My family circle’s many negative experiences don’t constitute a watertight indictment, nor are they meant to, but it’s little wonder that so many lack confidence and sometimes take staff assurances with a pinch of salt. Quite often there’s an uneasy peace between staff and more astute relatives. Whether it’s justified or not, some keep direct complaints and confrontation to a minimum for fear of grievances being taken out on residents.

Beyond that unpalatable reality, keeping the peace and choosing to intelligently measure your comments to staff is often a wiser approach. In serious ongoing circumstances it may be more effective to rise above local managers altogether and seek help and advice elsewhere.