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The loneliness of dementia
The numbers of those suffering from dementia are set to increase substantially. How should the Church respond, asks Brian Allen
 Maintaining dignity: above: a carer working with Alzheimer’s patients |
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GORDON has told his story many times now, but there was a time when no one was listening to what he was saying. The turning point came when, at his wits’ end, he told his GP that he could no longer cope, and was prepared to kill himself. The doctor referred Gordon for psychiatric assessment, which duly took place. Doctors then recognised that what Gordon was unable to cope with was caring, unaided, for his wife Janet, who by then was in the moderate-to-severe stages of dementia. Janet had gradually become unable to recognise people, or to carry out her usual daily functions. The recognition of Gordon’s difficulties meant that she was able to enter a nursing home that both welcomed and supported Gordon’s involvement with her care. Gordon’s story is by no means unique, but it highlights the way in which dementia can affect not only the sufferer. Ignorance and stigma, as much as the progress of the disease itself, can often leave people on their own, with devastating consequences. It is vital that an appropriate diagnosis is made, in order to gain access to the help that is needed. The importance of early diagnosis as a key to dementia care was highlighted in last year’s report from the National Audit Office Improving Services and Support for People with Dementia. One worrying aspect of these findings is that fewer GPs feel confident about their training to diagnose and manage dementia than three years ago. In view of current demographic trends, it is critical that dementia-care issues have a prominent place on social-policy agendas. “Informed inertia”, which has dominated approaches to dementia care, has been found wanting. A LONG-NEGLECTED aspect of human experience, dementia has become more familiar in recent years, not only because of high-profile sufferers such as Ronald Reagan, Iris Murdoch, George Melly, and the science-fiction writer Terry Pratchett, but also through the work of such agencies as the Alzheimer’s Society. Although not necessarily a disease of old age, dementia is more likely to affect older people. There are considerable social, political, and economic implications in living longer, and these are compounded by the increased incidence of dementia, as highlighted in the recent report from the Alzheimer’s Society Dementia UK. It is estimated that there are currently 683,597 people with dementia in the UK. Approximately 20 per cent of the population above the age of 80 and five per cent above the age of 65 have a form of dementia. It is marginally more prevalent in women than in men in these age groups. Below the age of 65, approximately two per cent of the population may suffer from a form of dementia. Marginally more men than women are affected. Dementia UK estimates current costs of dealing with the disease to be £17 billion, and suggests that by 2025 one million people in the UK will have dementia. The 2003 World Health Global Burden of Disease study estimates that, in people over 60, dementia was a contributory factor in 11.2 per cent of all years lived with disability. This is more than stroke (9.5 per cent); musculo-skeletal disorders (8.9 per cent); cardiovascular disease (5.0 per cent); and all forms of cancer (2.4 per cent). Although there have been advances in research into dementia, public funding is significantly less than for other serious medical conditions. Since 2002, almost a quarter of research papers have been about cancer, compared with just over one per cent on dementia-related topics. As a result, effective medical treatment is in its infancy; but there is a group of drugs that, in some cases, can delay some of the symptoms of dementia in its earlier stages. The National Institute for Clinical Excellence (NICE) has been challenged in court over its refusal to accept that there is enough evidence to allow the use of this medication in the early or mild stages of the disease. The Alzheimer’s Society and others argued that account should be taken of the benefits to carers as well as to sufferers. Research has demonstrated that in many residential and nursing homes there is inappropriate prescribing of neuroleptic drugs (tranquillisers used to treat psychotic conditions when a calming effect is desired) to people with dementia. NICE, however, appeared not to have taken this evidence into account when making its decisions. Loss is common to all forms of dementia, and can affect carers as well as sufferers. The demands of caring can mean a loss of relationships and social contact, leading to isolation. Indeed, dementia has been called the “long bereavement”, in which the emotional pain is compounded by both the disease process and society’s attitudes to it. DEMENTIA challenges us on many levels: from social policy to underlying philosophical questions about the nature of personhood, from theological dilemmas to the practice of providing good quality care for those affected. Tom Kitwood, an academic moral psychologist, who pioneered the work of the Dementia Group at Bradford University, has argued for a person-centred approach to the care of people with dementia, although he prefers to describe them as people whose mental powers are diminishing. Professor Kitwood’s dementia care is much influenced by I and Thou, by the Austrian-Israeli-Jewish philosopher Martin Buber. Buber describes life as a dialogue, beginning with relationship. He suggests that the meaning is in the encounter, the communication of the one with the other. “In the beginning and in the end is relationship, which can never be transcended or absorbed — even in God. There is the closest possible mystical unity between I and Thou, but always it is a mysticism of love, which insists upon and respects the non-identity of the other.” Professor Kitwood’s work confronted what he termed “malignant social psychology”, in which people with dementia are regarded as less than persons. Professor Kitwood lists at least ten negatives, including infantilisation and labelling, which deprive a person of the opportunity to realise his or her potential. A REPORT from the former C of E Board for Social Responsibility, Ageing, refers to a study of society’s attitudes to people with dementia by Hugo Petzch [CHK], in which he described three biblical models that arose out of working with people suffering from dementia. The “scapegoat” model (Leviticus 16) demonstrates some of the least-favourable attitudes, where the need to distance oneself from the victim, and to avoid any fear of contamination by association, are both present. Those who are put “out of sight” bear the burden of the guilt of society for the breakdown in relationships. The image of the suffering servant provides the second model (Isaiah 53.2b-3, 4), where the servant’s plight and the onlookers’ responses speak of the collective nature of the problem. The restoration of broken relationships can begin only when we recognise that our own attitude plays a part in distancing others, including people with dementia. Some health-service and church work operates in this way. High-dependency nursing may concentrate on practical and physical tasks alone, and people with dementia become objects for research as potential brain-tissue donors. Petzch argued that these two models are not exclusive, but overlap, and people can move in and out of each. His third model establishes a more appropriate response to the problem of our relationship with people whose cognitive functioning is diminishing. This draws on the account of the Gadarene demoniac (Luke 8). Someone rejected by society should be called by name, and accepted unconditionally; and this should culminate in that person’s restoration to society. Petzch emphasised that the will to restore the person is a pre-requisite. Unconditional acceptance brings concern for the plight of sufferers who are otherwise rejected. The will and the means to alleviate the suffering, even if at present it is incurable, can follow. Spiritual and pastoral care of people with dementia could be said to be based on an unconditional, person-centred approach, which can be the foundation for a ministry centred on the personhood shared by Christ. Much of Western tradition, however, shares a view of “persons” defined by function and rationality, and thus dysfunction and irrationality are indicators of non- or sub-persons. This could be seen as a comment on society itself: unable to cope with what seems like weakness and dependence, it equates those qualities with failure. Such attitudes, often born out of fear, can achieve moral and political acceptability, so that it becomes possible to kill those whose brains do not function well, and to call it “euthanasia”. The Churches share a mission to sustain people with mental as well as physical infirmities, and those caring for them. The past decade has brought several pieces of work in the UK dedicated to responding to these needs: from, for example, the Dementia Group of the Christian Council on Ageing; Methodist Homes; Faith in Elderly People, Leeds; and, more recently, the Leveson Centre. Although the tasks involved are person-centred and practical ones, it is important to promote a theology of dementia that can underpin pastoral work. Otherwise, even the best-intentioned care-giver is liable to be affected by society’s negative perspectives on dementia. In his research on ageing in the Early Church, the Revd Robert Merchant has drawn attention to the emphasis on social welfare reflected in the sermons, writings, and actions of church leaders such as St Basil and St John Chrysostom. Their commitment to vulnerable older people was evident in the design of homes for the aged. An examination of current advertisements in the ecclesiastical press of clerical vacancies, however, shows that the main concern of parishes is to find clerics who are interested in working with young people and families. Any mention in the advertisements of older people, or people with disabilities, is exceptional. Does the contemporary Church fail to recognise the significance of this rich and demanding area of ministry through lack of theological conviction? Non-Western traditions may be helpful in developing our understanding of these issues. By listening carefully to the voices of people with dementia, and their carers, we are reminded of the value of being in the present moment. Perhaps sufferers are teaching us something about the nature of personhood in creation. A person with dementia has the same human rights as any other citizen, and this includes access to the best quality palliative care available. Christians are challenged to give full value to the status of anyone with dementia, and to all those involved in their care. Justice for people with dementia is not a cheap option, either in terms of personal commitment or political will. Far more resources will be needed if they are to be treated as full members of society. The Revd Brian Allen is Chaplaincy Team Leader at Northumberland, Tyne & Wear NHS Trust. This is an edited version of an article in the forthcoming edition of Crucible. What is dementia? DEMENTIA is a general term for a group of symptoms including loss of memory and reasoning and communication skills, as well as changes in mood and behaviour. Each person experiences dementia in a different way — depending not just on the type of dementia, but also on a range of factors such as physical and emotional make-up. Dementia is an irreversibly progressive condition, which has, as a common feature, a gradual loss of the ability to carry out ordinary tasks. The commonest form of dementia is Alzheimer’s disease, which involves the malfunction and death of brain cells and a gradual long-term loss of function. In vascular dementia, the second most common form of dementia, these losses of function often occur in steps as a series of small, sometimes undetectable, strokes causing problems with the supply of oxygen to the brain. Alternatively, it can be caused by diseased small blood vessels or by a single stroke. It is not uncommon for vascular dementia to occur with dementia of the Alzheimer’s type. Dementia with Lewy bodies is the third main clinically identifiable category, caused by protein deposits or “bodies” in the brain causing symptoms similar to Parkinson’s disease in its movement difficulties, and losses similar to those caused by Alzheimer’s. These may be accompanied by hallucinations. This means that the person’s abilities and experiences can fluctuate from moment to moment, making things confusing and distressing for carers. Fronto-temporal dementia is more rare, but is more common among people below the age of 65, and behaviour and personality can change considerably. |
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The author Terry Pratchett (above) this month pledged £500,000 to the UK charity the Alzheimer’s Research Trust, in the hope of finding a cure for the disease. Mr Pratchett was diagnosed with a rare version of early-onset Alzheimer’s in December 2007.
“I am, along with many others, scrabbling to stay ahead long enough to be there when the cure comes along,” Mr Pratchett said. “There’s nearly as many of us as there are cancer sufferers, and it looks as if the number of people with dementia will double within a generation. In most cases, alongside the sufferer you will find a spouse suffering as much.” The Alzheimer’s Research Trust estimates that 700,000 people in the UK have the disease, but just £11 per patient is spent annually on research, compared with £289 for each cancer sufferer. “Perhaps that is why I know three people who have survived brain tumours, but no one who has beaten Alzheimer’s,” Mr Pratchett said in The Sun. “If we live to 65, one in three of us will die with dementia, a stark fact that should spur us all to join the fight against this devastating condition,” the Alzheimer’s Society says. At the moment, no one would be able to tell he has the brain disease, Mr Pratchett told The Guardian. “It’s quite hard to tell whether I have dementia or not — except for the fact that I’ve been shown a nasty bit at the back of my brain.” Mr Pratchett is paying for the Alzheimer’s drug Aricept because, he says, he is too young to qualify for it on the NHS. He has also had all the mercury-amalgam fillings in his teeth replaced by white ones, because of fears they may have helped trigger the disease. |
