Dementia is probably the one thing that people over the age of sixty-five dread more than anything else. It must first be said that to see this progressive decline is almost always worse for the immediate family than for the sufferer, who is usually unaware of what is happening.
There are many types of dementia; Alzheimer’s is the most common, but there are others. Confusion mimics dementia, and misdiagnosis is often made. Confusion can arise from all sorts of things – the death of a spouse or a partner, or of close relatives or friends; new surroundings, new faces – we can all suffer, at any age, from confusion. It is not confined to the elderly by any means.
Seventy per cent of all people in care homes are confused, probably because the life they have known for seventy or eighty years has come to an end, and now they are surrounded by strangers. On top of this, depression may be part of the trouble, arising from being in a care home in the first place. Often the person is grappling with the grief of bereavement, and loneliness, and the feelings of being useless and worthless contribute. The treatment is friendship, love, care, sympathy, understanding – all the qualities that generosity of the human spirit can give, and little else. Drugs and other medications have a small part to play, but if a misdiagnosis of dementia has been made, drugs can add to the confusion and deepen depression.
True Alzheimer’s disease is quite another matter. It is not confined to the elderly, but can start early in life. It is an identifiable disease, of unknown cause, of no known cure, and progressive until death occurs. There is no telling whom it is going to strike, but as our life span increases, the risk of dementia increases.
The symptoms of Alzheimer’s dementia start with frontal lobe forgetfulness of events, names, places, mixing up times, places, people, which is not difficult to live with and, in fact, can be quite endearing.
But Alzheimer’s disease will lead to other things, such as personality changes, aggression, destructive behaviour, dirtiness, random accusations and anger, and dangerous or obscene behaviour. We now recognise these as symptoms of the disease. Physical changes also occur – blindness, apparent deafness, inability to chew or swallow, inertia, muscular weakness or paralysis. Those who retain muscular strength can sometimes develop excessive walking habits – they walk from morning to night, never stopping until they fall exhausted. We are kind to these people, now – former generations of doctors and nurses kept them in chains.
The family can usually cope with these, and other manifestations of Alzheimer’s. It can be very difficult, but with day-to-day help from professional carers, they manage, inspired by love, respect and pity for the person affected. The condition is irreversible, but the patient can live for years before the degradation of the final stages occurs.
It is when Alzheimer’s reaches these stages that institutional care becomes necessary. The patient is helpless, can neither speak, eat, swallow, spit, nor cough. The body is unable to hold itself upright, the head rolls sideways or forwards on the frail neck, which cannot support the weight. The mouth hangs open and saliva dribbles out continuously. Not infrequently the muscles, instead of becoming limp, develop rigidity, and the body is twisted backwards into grotesque shapes that cannot be moved. Either way, the patient has to be strapped to a chair, and will also be doubly incontinent. The sufferer knows nothing and no one, and has reached the stage rather nastily known as a ‘vegetative state’. It is as near to death as anyone can be, and most people would say, ‘I would rather be dead’. Yet today, people can live like this for years.
In my days of nursing, patients seldom reached this state, because they died first from one of many possible causes: heart or kidney failure, bronchitis, pneumonia, septicaemia caused by bedsores, starvation because they could not swallow, choking because food or fluid entered the lungs and they could not cough. Pneumonia was the usual release. We called it ‘the old man’s friend’. Life-saving treatments were fewer than are available to us today, but also, and perhaps more importantly, medical people had far more autonomy. We were not hemmed in by bureaucracy and endless rules and guidelines. A doctor and the ward sisters could agree that treatment should not be given to a specific patient under specific circumstances, and this decision would not be questioned. Today, fear of litigation inhibits all decision-making.
In his outstanding book How We Die, Sherwin B Nuland tells the moving story of his friend Philip Whiting’s descent over six years into the extremes of Alzheimer’s.
… Phil became totally incontinent but was quite unaware of it. Although fully conscious, he simply had no idea of what had happened. Urine soaking his clothes and smeared sometimes with his faeces, he would have to be undressed to clean off the filth that profaned the pittance of humanness still left to him …
And through it all, he never stopped walking. He walked obsessively, constantly, every moment the ward personnel let him … Even when he was so weak that he could barely stand, somehow he found the strength to walk back and forth, back and forth, around the confines of the ward … Once seated, the frail body bent sideways because Phil didn’t have the strength to hold himself up any longer. The nurses had to tie him in lest he topple to the floor. And even then, his feet never stopped moving …
During his final month of life, Phil had to be tied into bed at night to prevent him from getting up to resume his incessant walking. On the evening of January 29, 1990, in the sixth year of his illness, puffing breathlessly from the effort of one of his fast, forced marches, he stumbled into his chair and fell to the ground, pulseless. When the paramedics arrived a few minutes later, they tried CPR [cardio-pulmonary resuscitation] to no avail and sped him to the hospital, which was right next door. The emergency room doctor pronounced him dead of ventricular fibrillation leading to cardiac arrest … [1]
The Methodist Homes for the Aged is an excellent, non-profit-making charity, and takes a high percentage of patients with Alzheimer’s who require twenty-four-hour care. The carers work cheerfully, motivated by a sense of vocation and duty. The Methodists have a specific policy for care of the dying, set out in their booklet The Final Lap. The teaching is based on acceptance of death as a fact of life, and the need to prepare for its coming, and I was discussing this with a chaplain for one of the Methodist Homes. All of their chaplains are closely involved with, but not responsible for, medical practice. Citing Nuland’s description of his friend’s condition and death, I posed the question, ‘Would you really allow such an aggressive resuscitation attempt upon anyone in that condition?’
I expected him to say, ‘No, we accept death and respect the dead.’ But he didn’t. He left it open by saying, ‘The trouble is, it is increasingly hard to define death – the boundaries are so blurred, and we do not have in each individual Home a member of staff who is qualified to pronounce death.’
He sat pondering for a minute, and then continued.
‘Apart from that, no Home wants to have too many deaths. You see, it is our policy to integrate the Home into the community, so that residents are not isolated. If too many coffins are seen leaving the premises, this could start fear and suspicion and gossip among people living in the area. You never know what might be said. This would be bad for the Home, and all the residents would suffer.’