The Reverend Albert Jewell answers one JKP Reader’s Questions about his latest book, Spirituality and Personhood in Dementia
The Revd Albert Jewell is a retired but still active Methodist minister. He served as pastoral director with MHA Care Group from 1994 to 2001, where he co-ordinated the work of the Sir Halley Stewart Age Awareness Project. He is currently Vice-Chair of the Christian Council on Ageing and the secretary of its Dementia Group.
This month, we offered one of our readers, the Revd Keith Tewkesbury of Wales, UK, a chance to preview a copy of Revd Jewell’s latest JKP title, Spirituality and Personhood in Dementia, and ask him some questions about it. These questions are incorporated below.
Sincerest thanks to Revd Tewkesbury for his insightful questions, and to Revd Jewell for his illuminating responses! Click here to see Revd Tewkesbury’s review of the book.
You’ve written a number of books on aging and spirituality. How did this become a particular focus for you?
When I was appointed Pastoral Director of Methodist Homes for the Aged (MHA) in 1994, I was already impressed by the positive contribution of recently retired people (and older) in the local churches and communities I served as a minister. As a hospital chaplain I encountered both very good care given to older people with dementia and situations where drugs and restraint seemed over-used. Amazingly, individuals who appeared to be totally unresponsive during acts of worship in hospital chapels and care homes demonstrated afterwards that this was very far from being the case. At MHA we received a generous grant from a charity to promote an Age Awareness Project which produced a number of resources including my edited book, Spirituality and Ageing in 1999. I became convinced that the spiritual needs of older people are the same as those of younger people but that they have a particular focus because of the nearer proximity of death. When I retired I pursued a PhD studying the sources of well-being, including spiritual well-being, in a sample of churchgoing older people.
Why was it important to write this book, and why now? How did it come together?
The book should be seen as one of a trilogy. Spirituality and Ageing and the subsequent volume, Ageing, Spirituality and Well-being (2004), contained respectively five and two chapters dealing directly with dementia. This seemed proportionate in light of the fact that only some 30% of people are likely to develop the dementias that most characterise old age. It therefore seemed appropriate that Spirituality and Personhood in Dementia should be totally concerned with dementia. The timing seemed right in that the paradigm switch in care to a person-centred approach, pioneered by the late Professor Tom Kitwood, was gaining ground, albeit slowly, and the recent government-initiated Dementia Strategy seemed to cry out for appropriate resources to improve the holistic care of people with dementia, who would be more likely be found in their own homes or in care homes rather than in hospitals. Through my earlier books, and as secretary of the Dementia Group of the Christian Council on Ageing (CCOA) and editor of its newsletter, I found myself in touch with a wide range of individuals from different backgrounds and disciplines in the dementia field across the world. I was surprised and gratified that all twenty of those I approached to write chapters willingly accepted, although I was sorry that the two who would have made contributions from Jewish and Muslim perspective respectively had to drop out for different reasons. Those contributing fell into three groups: those writing from direct personal experience, researchers and practitioners, and theoreticians. The project took almost two years from inception to publication because of the multiplicity of writers involved – but they all delivered well and on time!
Can you give us a couple of examples from the book that raise particularly important or timely issues related to dementia care?
Choosing two is rather invidious as they all meet this criterion! However, I guess the question invites selecting from amongst those writing from personal experience and the researchers/practitioners. From the former I choose Marianne Talbot who had already written a regular blog, ‘Keeping Mum’, for Saga Magazine Online. Her chapter on ‘A Carer’s Perspective’ is devastatingly honest about the difficulties of navigating the care system and the harm this can cause for the person with dementia as well as the unbearable pressure on the single carer. Care commissioners and providers have much to learn from reflecting on what Marianne writes. Consultant Clinical Psychologist, Padmaprabha Dalby, writing on ‘To Live and Do and Help’, reports from her small-scale qualitative research that her subjects found vital purpose and fulfilment in life from going on giving and serving other people, in most cases religiously inspired. This is a wonderful example of the importance of harnessing the remaining strengths of those with dementia rather than stressing their losses. Rather than being done to or for, or worse still being regarded as non-persons, they can still do and be the unique persons that they are – given the necessary encouragement. But all the chapters, though realistic, are positive.
Revd Keith Tewkesbury: To what extent and how far has your exploration of dementia enhanced your understanding of spirituality?
Very much and in several ways. People with dementia in the main live in the present moment because the past tends to get dismantled. To be able to live fully in the present, rather than be bugged by the past or worried about the future, is a great gift and one I covet. There is a lot to learn from Buddhism here, as several of the contributors to the book demonstrate. Sadly, most Christian theological models fail to include people with dementia because they are based upon memory, relationships, spiritual growth, or doing God’s work. People with dementia remind us that ultimately we are all dependent on the grace of God alone – being remembered and valued by him – not on anything we profess or do. For someone like myself, rather too intellectual, speculative and active, the person with dementia recalls me to the simplicity of the tactile symbols of faith and familiar words of scripture and liturgy – these are the things that really last and are sustaining!
Revd Keith Tewkesbury: What are the implications of the growing body of research into the spiritual needs of people living with dementia (and their carers) for the Health and Social Services and government policy more generally?
I am so glad you have included ‘and their carers’. So often they feel desperate because of the continual pressure and guilty because no one is a perfect carer – we are all human beings with our limits. In providing such care the person can become cut-off from friends and their main sources of spiritual support in churches and other faith communities, who not always good at recognising and responding practically to the needs of family carers. There is virtual unanimity amongst care providers that the person-centred approach is far superior to restraint and what is sometimes called ‘the chemical cosh’. However, such person-related care is very time consuming and therefore very costly. Relevant and continuous training is not always provided for professional carers who are woefully low-paid. Funding from local authorities on the whole is quite inadequate to guarantee any quality of care. If the Dementia Strategy is to have any chance of succeeding, then it is going to cost, and at a time when local authorities are being further squeezed by central government. We do well to remember that a society is to be judged on the way it treats its most vulnerable members. As regards spiritual care, care providers and workers are usually scared off because they do not understand what it is. Gaynor Hammond, in her chapter, demonstrates through the course of a day how spiritual care, which gives proper dignity to each unique person, is delivered through quite ‘ordinary’ attitudes and acts.
Care homes should not be expected to provide for the religious needs of their residents but they should be encouraged to harness the support of local clergy, churches, and other faith groups and leaders. Local Churches Together groups and similar organisations can take the initiative here. I was recently the visiting preacher at an Anglican church where at the very start of the service some 20 people were blessed and sent on their way. I discovered afterwards that this happens once a month and they go to several care homes to conduct services at the usual times of morning worship.
Revd Keith Tewkesbury: How can best practice be more widely disseminated and implemented?
This I guess is the $60,000 question! It is not easy. As a member of CCOA and Faith in Elderly People (Leeds), I can say that we have continually made representations to government regarding spiritual needs within a holistic framework, the paramouncy of person-centred care, and staff training. The CCOA Dementia Newsletter is widely and freely distributed. It is mainly a matter of keeping up the pressure on both national and local government with allies such as Alzheimer’s Society. The best advocacy is giving wide exposure to excellent (as well as patently bad) examples of care. Some recent TV programmes and newspaper articles have done this. Dementia is but a poor relation in most people’s priorities and this will take a great deal of time to change – but, with our ever growing elderly population and the increase incidence of dementia it brings, this is surely something of concern to all.
Revd Keith Tewkesbury: How would you respond to someone who wants to care for a person with dementia and who finds it seemingly impossible to connect with them?
It really depends on the stage of dementia the person has reached. Early on it is usually possible to gently help the person to keep contact with reality, i.e. retain them in ‘our’ world, by ensuring that they are reminded of the time of day, what they have just done or what they are going to do etc. As the disease progresses, this does demand a goodly supply of patience. In the later stages of the disease, the person appears to lose contact with reality and live in a world of their own – though often with flashes of present awareness or recognition. It is then that a carer is likely to get most frustrated about lack of ‘connection’ and be tempted to argue volubly. This is obviously not helpful to the person with dementia who may respond with aggression or retreat into their own world. Best advice is not to continue trying to drag the person back into your world but to seek to enter theirs and explore what underlies their seeming confusion or worry. If they take you to be their mother instead of their wife, then gently ask if they are missing their mother or what they remember about their mother – rather than contradict or ‘correct’ them. If this leads to a happy conversation, albeit time-displaced, then the good feelings engendered can last a long time. John Killick’s chapter in the book demonstrates great skill and patience in relating to the person with dementia. But he was a stranger, and a close relative often gets the feeling the person is not really trying to relate – leading to resentment that can fester. There are quite simple pieces of advice that can help. For example, make sure you don’t speak too quickly or in a complicated way. One thing at a time! Be careful about asking factual questions, which the person may find they simply cannot answer because of memory loss and feel diminished as a consequence. Far better to stick with feelings. Since what you ask in your question is such a common experience, it is also helpful for carers to be able to meet with other carers to share their experiences and the ways in which they personally cope. There are such groups organised by Alzheimer’s Society and others. The message is: don’t be too proud to learn from others.
Revd Keith Tewkesbury: How do you put across the concept of ‘being’ (rather than ‘doing’ or ‘thinking’) to those who find it unintelligible?
This is a difficult question to answer. You are right that in a society which emphasises doing and achieving so highly, and assesses personal worth on that basis, the concept of ‘being’ can be less than intelligible. Even many ‘religious’ people find simply being in the presence of God something that they find hard to accept. One response might be to encourage sceptics to think of situations or experiences which have been especially powerful or meaningful for them, when they have been ‘doing’ nothing. Such may be listening to music or contemplating a beautiful scene – in other words, they have been the passive recipients of something special which may have renewed their psychic energy. All lives are a balance between doing and being – as witness the fact that we sleep for roughly a third of our day. As people get older, this balance does tend to change. Most find the necessity to reduce their activity level by a process of what has been called ‘selection and optimisation’. In the light of the nearer prospect of death, it is natural to give attention to existential matters to somehow make sense of one’s life and even find some ultimate meaning in it. Going on doing into very old age can be a barrier to what I would regard as the spiritual agenda of the second half of life. But not everyone warms to this.
“The scope and variety of contributions combining both practical and theoretical chapters makes this an ideal catalyst for theological reflective practice. The level of research based expertise makes this book a valuable resource for all those who work with older people some of whom will be experiencing degrees of dementia. This will include clergy and church pastoral workers as well as those in social services, care homes, carers and family members. As a Methodist minister in a typical circuit appointment I found it a ‘must read’ providing insights and raising questions which will inform my pastoral practice. It links theology and psychology in creative ways providing a basis for pastoral care within the context of sustaining spirituality which is broadly defined to include those of varied faith traditions and none. Most importantly of all it explores what it is that makes us human and of continuing worth to the end of our lives.”
- Revd Keith Tewkesbury MTh BD BA BSc, Methodist Circuit Minister and Assistant Chair of the Wales Synod
Copyright © Jessica Kingsley Publishers 2011.