Finding Meaning in the Experience of Dementia by Elizabeth Mackinlay and Corinne Trevitt is based on the findings of the first major study on spiritual reminiscence work with people with dementia. This extract explains the role of the facilitator in spiritual reminiscence groups.

The communication strategies demonstrated by the facilitator could ‘make or break’ a group. When listening to the recordings of spiritual reminiscence groups it was interesting to note how much the difference between responses depended on the group facilitator’s style. Prior to the commencement of the project in each facility, the group facilitators had training in techniques to enhance their communication and group facilitation skills. The research assistant present at all the group sessions was of considerable assistance in assisting with challenging communication issues and in debriefing the facilitator at the completion of each session. It was good if the facilitator had had the experience of being a participant in a spiritual reminiscence session, prior to facilitating a group themselves.

The facilitator had to be very comfortable with the notion of personhood and be able to identify the behaviours that led to ‘malignant social psychology’ (Kitwood 1997). In addition, s/he needed to have a good understanding of the elements of behaviour that encourage person-centred care and also the guidelines for managing reminiscence activities. In the following example the facilitator gave as much time as needed to help Jessica find what she wanted to say. By just affirming that she was still listening, the participant was encouraged to keep going – to try to find the right words. The interaction also identifies how frustrating it can be for people with dementia to join in and contribute when words are difficult to find.

Facilitator: Mmm.
Jessica: I want to do it, but I am slow. And that is the main problem I think, that I am slow at doing these things. I know how to do it, but it doesn’t come.
Facilitator: Mmm hmm.
Jessica: I am slow to get that done, and I keep thinking about it, but it is not coming as quickly as I wanted to, and I am slowly exasperated.
Facilitator: Mmm.

The facilitator also needs to be aware of his/her own spirituality, to be comfortable with the types of questions asked in spiritual reminiscence.

Questions such as:
• What gives you most meaning in your life?
• What does spirituality mean for you?
• What makes you feel happy or sad?
• What has brought you joy?
• What do you look forward to as you come near the end of your life?

Questions of God and religion were also asked in the groups, and facilitators had to be comfortable with their own spirituality so they could facilitate these topics in discussion. One facilitator in the study decided not to continue facilitating a group as, although she felt this was important work and she attended church regularly, she did not feel comfortable speaking about religion with others.

An essential beginning for group work is respect by the group facilitator for the group members and a willingness to meet them where they are in their life journeys. The skills used in small groups are those used by the helping professions – first, active listening and being really present with the participants.

Effective facilitation of group participation includes using appropriate and open-ended questions and then allowing space and silence while the individual reflects. It includes the use of paraphrasing, unconditional acceptance and the skills of focusing and summarising.
In spiritual reminiscence, it is best to focus on the meaning of events and experiences in the lives of the participants rather than simply on the description of the events remembered. This moves the conversation to a deeper level and enables a review of life meaning. Spiritual reminiscence is one of the spiritual tasks of ageing, and as such an important component of the life journey; it is so much more than simply an activity.

*This article is adapted from Chapter Twelve: Maximising Effective Communication.

He is the co-editor, with Mahendra Perera and Karuppiah Jagadheesan, of the forthcoming book, Making Sense of Near-Death Experiences: A Handbook for Clinicians‘ – available from Jessica Kingsley Publishers in November 2011.

In this video, he discusses the phenomenon of the Near Death Experience (NDE); why it is essential that nurses, doctors, palliative care workers, psychologists, psychiatrists and other helping professionals learn how to talk seriously about these experiences in a non-judgemental way; and offers some advice about what clinicians should do when encountering a patient or client who has had an NDE.

Click here to view the video on YouTube.

Copyright © Jessica Kingsley Publishers 2011.

Jessica Kingsley took a few minutes between meetings to talk about why we attend this major international event, and to highlight some of the things we’ve been talking about.

Click here to view the video on YouTube.

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.

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“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.

Dr. Larry Culliford is a psychiatrist, lecturer and author. He co-founded the Royal College of Psychiatrists’ Spirituality and Psychiatry Special Interest Group, and is former Chair of the Thomas Merton Society of Great Britain and Ireland.

Here he answers some questions about his new book, The Psychology of Spirituality: An Introduction.

Tell us about you and your background, and why you wrote this book.

I was born in Surrey on St Patrick’s Day 1950. Although I was baptised in the local Church of England church, none of my family were very interested in religion. Despite this, loving Bible stories, I gravitated decisively towards Christianity at school. I also loved science, studying physics, chemistry and biology in preparation for medicine at Cambridge. Somehow, I already knew that there was no fatal incompatibility between science and religion, and that both contributed to a wider form of wisdom and truth.

Later I became interested in psycho-somatic illnesses, in how mental distress seems to cause or contribute to physical symptoms. After qualifying as a doctor in 1974 and working for a year in the NHS, I went to New Zealand and Australia. Some stories from my life at that time are in the book. I worked as a GP and then trained to become a psychiatrist. A number of experiences convinced me that the art of medicine involved healing people, rather than simply suppressing or removing symptoms. It was more than simply the application of science. I liked to take my time with patients, ask questions and really listen to the answers. Psychiatry allowed me to do that. Psychiatric patients also brought with them a whole new set of conundrums.

I started to think, and started to write to help me make sense of my thoughts. I realised, still in my twenties, that physics and chemistry did not explain life fully, and biology (including the biology of the brain) did not explain consciousness and the mind fully. It struck me then that personal psychology didn’t explain interpersonal and group interactions fully, and that social psychology had limitations too. To complete the picture, these four (physical, biological, psychological and social) required a vital fifth, ‘spiritual’ dimension. You cannot understand anything properly until you take all five into account. According to the holistic paradigm, connections between the five dimensions are seamless. The boundaries between them are more apparent than real.

Rather than abandon the secular scientific model of understanding how things happen in the universe, I found myself extending it in a way that allowed answers to ‘why’ as well as ‘how’ questions: questions about finding meaning and having a sense of purpose in life; questions about values and morals, about how to be and behave; questions that lead to wisdom, in addition to facts. I learned a lot about holistic (as opposed to dualistic) ways of thinking, years ago, from Eastern faith traditions and practices, particularly Buddhism and Zen. I have had my thinking cap on ever since, and this book is my best attempt so far to make a coherent narrative of it all.

What is the new holistic or ‘psycho-spiritual’ paradigm, and why is it taking hold at this point in time?

The holistic, psycho-spiritual paradigm refers to a universe that is awe-inspiringly sacred and unified. Whatever happens in one part, and in one mind, affects (if only infinitesimally) what happens everywhere else, and in all other minds.

Each person is vitally linked to the divine whole through a core consciousness or ‘spiritual self’, and through this to both the natural world and to everyone else. Here lies a valuable source, which many people already know about intuitively and depend on, of guidance and wisdom, of creativity, courage, hope and strength. The ‘everyday ego’, on the other hand, is more selfishly concerned with surviving and thriving in the material world. According to the new paradigm, this dualistic split begins in infancy and plays itself out through six stages of spiritual development towards eventual reunion, harmony and maturity.

Spirituality and psychology have been kept apart for too long. It is good news that, in terms of both personal and social psychology, the psycho-spiritual paradigm has arrived to point a valid way forward. Evolving since William James published The Varieties of Religious Experience in 1902, it was boosted considerably by the work of Carl Jung in the last century, and extended more recently by several pioneers, including James Fowler, John Swinton, David Fontana and Victor Schermer. This book offers some final pieces to the jig-saw, linking the whole picture together.

For example, rather than something to avoid, adversity (such as when a person is ill or dying, or facing other kinds of loss, such as bereavement) becomes more acceptable, because it presents opportunities for spiritual development. The book explains in detail how emotional healing leads directly to personal growth.

The paradigm is taking hold now because many people have intuitively come to recognize its value at both personal and social levels.

‘Conformist’ stage three, for example, is associated with a universal drive to belong to a social group, but this often leads to a kind of us/them, right/wrong, win/lose, success/failure mentality that provokes widespread mistrust, contributing to destructive antagonism and conflict. However, ‘individual’ stage four also brings problems, resulting in feelings of rejection and painful isolation.

The idea that there must be a better way has grown strong in many people, who understand that what we each think, say and do matters. What we each reject, avoid saying and don’t do is also just as important. As a remedy, people are finding their own ways to develop spiritual skills through a range of spiritual practices that are not necessarily based on religion. These developments are covered systematically in the book’s two final chapters.

Spiritual practices essentially involve taking control and allowing the mind regularly to grow still. The benefits are considerable. Usually gradually, but occasionally in sudden bursts of insight, something seems to happen. Spiritual values (like honesty, kindness, generosity, patience, and compassion) begin to take hold. Desires give way to contentment. People naturally become less possessive, more flexible in their ideas and behaviour. Lives are simpler, and a comforting sense of kinship with a much broader variety of people emerges.

Generally less fearful, we are more co-operative and less competitive, living day by day with greater joy, spontaneity and freedom than before. This benefits the people around us, and many others more indirectly. Social evolution will involve more people moving out of the illusory comfort zone of stage three, entering and surpassing stage four, into ‘integration’ stage five and beyond.

In addition, in the field of psychology and in other disciplines, the deployment of spiritual skills means that the search for objectivity associated with the former secular, scientific model can now profitably be complemented by a suitably contemplative methodology to achieve deep subjective insights that are equally valid and reliable… and may prove of superior value.

In the book, you use Barack Obama’s personal story to illustrate the stages of spiritual development. Why him?

U. S. President Obama has a high public profile. His best-selling autobiography, Dreams From My Father, written at the age of 33, describes a man during individual stage four, resisting temptation to conform to a social group that is governed by self-seeking material values, while trying to avoid isolation and discover his true identity. He writes clearly about a number of powerful experiences that can be interpreted as spiritual, prompting and guiding his development towards integration stage five and a commitment to spiritual values.

What does it mean for those in the helping professions to have ‘spiritual skills’ in practice? What is their role in the spiritual development of their clients and patients?

Medical conditions, mental health and social problems all involve people experiencing distress and disability, facing losses and the threat of loss. The basic spiritual skill, of being able to rest, relax and create a still, peaceful state of mind, underpins others, such as empathic ability and emotional resilience, which allow us better to understand, comfort and guide those people in difficulty who are suffering. These are skills that give people the courage to witness and endure distress while sustaining an attitude of hope, and the inner strength to be able to give without feeling drained.

When we feel tested by our work, instead of being negative, seeking to avoid adversity and suffering, we can take it as an opportunity each time to learn and grow wiser. There are several illustrative vignettes and personal anecdotes about this in the book. It often involves giving up cherished attachments and accepting one’s limitations, being better able to grieve losses and let go, rather than continue fiercely to resist changes and loss. Taking a positive attitude to suffering sets an example also to the people we are trying to help.

The book’s final two chapters focus on these key professional skills, and on various spiritual practices, religious and secular, that can be used to develop them. People who engage with such practices in a disciplined way will gradually move forward through the stages of spiritual development and come to be motivated less by fear and anger, much more by seeking and achieving equanimity, satisfaction, respect, contentment, and freedom from suffering, not just for themselves but for everyone else too. It is a calmer, happier and more useful way to be.

Tell us a little bit about the chapter in the book about taking a ‘spiritual history’ – how did you develop this and what is its function?

Some years ago, I was asked to write an article for a psychiatry journal on assessing the spiritual needs of patients. I was also putting together a short course for medical students (described in the book) on spirituality in health care. I read what others had already done, but also thought about it myself. This often involves keeping a topic or problem in mind until inspiration strikes. Insights and solutions arise more easily, I have found, since learning to meditate many years ago. I think of it as tuning into my spiritual awareness in a way that has become a pleasing habit, and somewhat ordinary, rather than the tedious and confusing chore it often felt like at the beginning.

Professionals are often understandably wary of religion; but spirituality (the ‘active ingredient’ of all world religions, so to speak) can no longer be ignored. It operates as a dimension of experience for non-religious people too, even if they are not much aware of it and do not accept it. As described in the book, plenty of good healthcare research shows that paying attention to the religious/spiritual dimension contributes (in wide range of physical and mental illnesses) to preventing ill-health, improving speed and degree of recovery, reducing persistent distress and minimising the consequences of disability.

Taking a spiritual history is a sensible first step towards avoiding the mistake of throwing the spirituality baby out with the religious bathwater. A number of checklists and protocols exist, but a simple and direct way involves the use of just two sets of questions: 1) “Are you religious or spiritual in any way?” (“Please tell me about that.”) 2) “When things a going badly for you (such as when you are ill), how do you find strength and comfort, sources of courage and hope?”

Even in those who deny being religious or spiritual, the second question gets to the heart of what gives their life meaning and provides them with important resources. It opens up the spiritual dimension for at least some kind of preliminary discussion.

In Chapter 3, I have told the story of a female medical student reporting back after asking a patient about her spiritual life and how it helped her cope with her illness. With great enthusiasm, she told her fellow students and me, “That’s the first time in three years as a student that I have felt I’ve actually helped somebody”. It was a valuable breakthrough for her.

Genuinely enquiring about a person’s spirituality, and listening to what they say, tends to deepen rapport, and can by itself be therapeutic. At the very least, taking a brief spiritual history in this way allows a professional to decide whether there might be a religious or spiritual component either to the problem or the solution, and whether a more experienced person – such as a hospital chaplain – might help clarify and remedy the matter.

What is the goal of spiritual development?

The goal of spiritual development involves living meaningfully and gratefully, moment by moment, day by day, in an untroubled way that enhances one’s feeling of harmony with unified nature, fostering trust, respect and affection mutually between you and all fellow travelers on life’s journey. This is fully consistent with Christianity, as well as with the core teachings of the other major world faiths, which together represent a vast treasure-house of spiritual wisdom. There is no need to take my word for it. The book offers ideas to ponder, questions to consider and exercises to try. Why not experiment for yourself?

Copyright © Jessica Kingsley Publishers 2010.

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