Spirituality and dementia

Spirituality is an essential part of many people’s lives and can manifest itself in unique ways. This post explores the role spirituality plays for people with dementia as well as for carers and how those around them can support the ongoing need for the spiritual aspects of life.

BetweenRememberingBook: Between remembering and forgetting: The spiritual dimensions of dementia edited by James Woodward, 2010

We are increasingly aware of the economic and emotional cost of dementia, but its spiritual dimension is often overlooked. Between Remembering and Forgetting brings together contributions from distinguished and experienced practitioners in the front line of dementia research and care to reflect on this, and to explore the implications for Churches and other faith groups, as well as for individual carers. A practical focus offers not only a critique of areas for future research and development in the field of dementia, but also directs the reader to further resources. The Editor was for ten years Director of The Leveson Centre, which brings together for study, reflection and the exchange of ideas and information those who believe that older people should not be considered passive recipients of care, but as valued and cherished members of society who can inform and enrich the lives of others. In particular the Centre is developing an understanding of spirituality as lived by older people, and aims to support them to express their spiritual awareness.

Dementia - Frank and LindaBook: Dementia: Frank and Linda’s Story: New understanding, new approaches, new hope, 2010

Frank and Linda have been together since their schooldays. They married, ran a guest house and raised children – then Frank developed dementia. “I’m losing my best friend,” said Linda. Frank’s story is almost over, but had he been born twenty years later it might have been different.

Today, thanks to a better understanding of how the brain works and how it is affected by dementia, experts and carers have developed a new way of caring that can help to hold the person together, reinforcing their individuality and even allowing them to live contentedly.

Frank and Linda’s story powerfully depicts this new approach to caregiving. It focuses on the three important aspects of dementia care – living, helping and spiritual support. Built on the foundational Christian belief in the sanctity and meaning of life, the book is filled with pointers and information, including a detailed appendix that lists organisations around the world that offer advice and help.

AJDCAugSept2014Article: Carers reveal their spiritual, emotional needs, Fiona Calvert, Australian Journal of Dementia Care 3(4), August/September 2014, p.37

Researchers from Charles Sturt University investigated the spiritual needs of carers of people with dementia. The themes of connectedness, personal well-being of the person with dementia, importance of religious, spiritual and end-of-life issues and meaning and hope were identified by the family members of a recently-deceased person with dementia.

This summary article is based on a study published by Slape J (2014) Dementia and palliative care: the spiritual needs of family members. Journal of Religion, Spirituality & Aging 26 215-230.

Note: should you be interested in this article please request it through our handy form.

vital_connectionsBook: Vital Connections in Long-Term Care: Spiritual Resources for Staff and Residents by Julie Barton, Marita Grudzen and Ron Zielske, 2003

That spirituality is an integral component of the total well-being of older adults is being increasingly recognised. Now staff in long-term care settings can see compelling reasons for integrating spiritual care into daily care and realistic ways of putting it into practice.

Vital Connections in Long-Term Care provides an abundance of practical lessons, exercises, discussion questions, multicultural and interdenominational case examples, journaling opportunities, and implementation suggestions that can be used to sensitize staff and others to residents’ spiritual needs and the ways that these needs may be supported through special functions and everyday interactions. Learn how to: assess a resident’s spiritual needs : transcend religious orientation ; build a sense of community ; bring a spiritual dimension to celebrations and rituals ; use spirituality to help people cope with pain ; use familiar religious routines to reassure disoriented residents ; broaden application of spirituality during mealtimes ; help people cope with end-of-life issues ; and much more.

Vital Connections will help directors of nursing and nursing staff, administrators, care managers, social workers, activity directors, occupational and physical therapists, in-service trainers, instructors in aging and spirituality courses, and chaplains and parish nurses enhance their practice and transform residential care facilities into sacred spaces.

GuideCulturalSpiritualAwarenessGuide: A guide to cultural and spiritual awareness: Nursing Standard Essential Guide by Jean Serge Mootoo, 2005

This useful resource outlines the core aspects of different religions and cultures. It covers specific beliefs around personal care, death, naming and other important religious and cultural traditions. For those wanting to understand more about different cultures and religions or for those working in an aged care or hospital setting, it is a great introduction.

 dementia journalJournal: Dementia: the international journal of social research and practice: Special Issue on Spirituality and Dementia 2(3), October 2003

This special issue of Dementia brings together three perspectives related to dementia care, religion, and spirituality; the diagnosed; the family caregiver; and the clinician. It is notable that a common message is found in all three perspectives. Specifically, issues of religion and spirituality must not be ignored in the dementia experience. Spirituality and religion are significant resources – across a wide spectrum of faith perspectives – for coping with a diagnosis of dementia. (Stuckey and Gwyther (2003) Dementia 2(3), p. 291)

Editorial – Dementia, religion, and spirituality by Jon C. Stuckey and Lisa P. Gwyther, p.291

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Satisfactions and challenges in spiritual faith and practice for persons with dementia by Lisa Snyder, p.299

In the past decade, there has been greater attention given to the role of religion and spirituality in coping with Alzheimer’s disease and related dementias. This research has focused largely on caregivers with much less attention given to those afflicted with the disease. This qualitative study examines the role of religion and spirituality in the lives of persons with dementia. Quotes from 27 individuals with Alzheimer’s and one person with frontal temporal dementia reveal the following themes: the role of religion or spirituality in finding meaning in dementia; the role of religion or spirituality in coping with the disease; the influence of dementia on religious or spiritual practices; and the influence of dementia on faith. Findings illuminate the importance of including the perspective of the person with dementia in assessments and interventions aimed at understanding and addressing the spiritual needs of families.

Note: should you be interested in this article please request it through our handy form.

Personal spirituality of persons with early-stage dementia: is it related to perceived quality of life? by Towako Katsuno, p.315

During times of stress and uncertainty, research has documented that individuals may turn to religion and spirituality as coping resources. But what about those with dementia who have a decreased cognitive capacity? Do they also turn to religion and spirituality and are these coping resources related to overall quality of life? The objective of this study was to describe the spiritual experiences of persons with early-stage dementia and to explore the relationship between personal spirituality and perceived quality of life. Twenty-three participants were interviewed using: a semi-structured interview guide; the System of Belief Inventory (SBI); and the Quality of Life Index (QLI). Qualitative data analysis illuminated an overall theme of `faith in God’ and six related categories: beliefs; support from God; sense of meaning/purpose in life; private practice; public practice; and changes due to dementing illness. There were significant relationships between the SBI scores and the QLI scores. Findings suggest that those with early-stage dementia often find personal spirituality and its internal meanings important in coping with their life situations, that is, spirituality is associated with their perceived quality of life.

Note: should you be interested in this article please request it through our handy form.

Faith, aging, and dementia: experiences of Christian, Jewish, and non-religious spousal caregivers and older adults by Jon C. Stuckey, p.337

Research consistently documents positive relationships among religion, spirituality, and outcomes related to well-being. The purpose of this study was to determine the degree to which spousal dementia caregivers and other older adults rely on religion and spirituality as coping resources. A total of 52 Christian, Jewish, and non-religious dementia caregivers – as well as matched comparison groups of non-caregivers – were interviewed. Qualitative data analysis yielded both common themes among the three religious groups as well as themes of distinction. The findings suggest that the search for meaning and purpose during stressful life events knows no religious or spiritual borders. Even among the non-religious and non-spiritual, purpose and meaning were found in other areas, including in caring for others, in friendships, or simply in the aesthetic joys of life.

Note: should you be interested in this article please request it through our handy form.

Spirituality in multicultural caregivers of persons with dementia by Carol J. Farran, Olimpia Paun and Mary Horton Elliot, p.353

This qualitative study examined spirituality in a multicultural group of caregivers of persons with dementia. The work was based upon earlier focus groups that centered on general outreach to African-American caregivers. While initial questions focused on caregiving experiences, service needs, and barriers to service use, caregivers spontaneously shared their experiences concerning spirituality and caregiving. In an effort to respond to these comments and embrace a more expanded outreach approach, successive focus groups specifically addressed questions about spirituality and caregiving. Using semi-structured questionnaires, three focus groups with existing community-based groups were conducted (N = 43). Four major categories emerged from the data: teachers of the faith; the role of faith in one’s life; benefits of spirituality; and the caregiver, the care-receiver and the caregiving experience. These major categories were integrated into a spiritual model for the caregiver and the caregiving experience. Findings suggest that community-based outreach approaches should embrace an appreciation for caregivers’ faith development, expressions, and experiences of spirituality; that clinical interventions should be more proactive in responding to spiritual/religious issues; and that future research efforts should refine methods and approaches for a more integrated scientific basis that further examines relationships between spirituality and mental and physical health outcomes.

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Religion, spirituality, and ethnicity: what it means for caregivers of persons with Alzheimer’s disease and related disorders by Marcie C. Nightingale, p.379

Caregivers of persons with Alzheimer’s disease (AD) provide an inordinate and escalating level of care. It has been postulated that: (1) religious beliefs and/or spirituality may assist individuals in their caregiving efforts; and (2) coping strategies may vary depending on ethnicity. The intent of this pilot study was to examine these theories by interviewing five African-American and five white caregivers of persons with AD using demographic and open-ended questions regarding spirituality, religious practices, and ethnicity. Five themes were identified regarding the development of the caregivers’ beliefs and practices:

  1. 1. later life development of beliefs;

  2. 2. religious training and practices;

  3. 3. family influences;

  4. 4. impact of ethnicity on caregiving; and

  5. 5. impact of spirituality and religion on caregiving.

All caregivers felt their spirituality and/or religious practices shaped how they approached providing care and all reported that they were influenced by their ethnic background. Most stated that religious practices and spirituality affected how they felt about providing care and that religion and spirituality helped them deal with difficult challenges. Through a better understanding of the importance of different coping mechanisms among caregivers, professionals are able to provide more sensitive care to persons of diverse groups.

Note: should you be interested in this article please request it through our handy form.

Aspects of spirituality in dementia care: when clinicians tune into silence by Robert M. Lawrence, p.393

Clinicians dealing with persons with dementia are usually unable to maintain communication with the individual beyond the available psychometric tests that only give a crude evaluation of the person’s capacity to express thoughts and feelings. Evidence from the elderly with terminal illness and functional psychiatric illness shows that the individual tends to `journey’ back to reassuring and positive experiences and that religious matters are of paramount importance in dealing with terminal illness and death. Normal communication channels are precluded for individuals with dementia, as they gradually lose the ability to use understandable speech. The clinician may partly circumvent loss of communication by gathering a holistic and comprehensive view of the person’s spiritual background at the very outset and by incorporating this holistic view into the care plan.

Note: should you be interested in this article please request it through our handy form.

Spiritual care and the person with dementia: the development of guidelines to support staff working with people with dementia by Daphne Wallace, p.421

This article outlines the production of practical guidelines for spiritual care of people with dementia. The guidelines are applicable in principle for any people in long-term residential and nursing care.

Note: should you be interested in this article please request it through our handy form.

where two worlds touch_webBook: Where Two Worlds Touch: A Spiritual Journey Through Alzheimer’s Disease by Jade C. Angelica, 2014

Jade Angelica shares the wisdom and hope she gleaned from caring for her mother and from many years working closely with Alzheimer’s patients and caregivers. Challenging the predominant belief that people with Alzheimer’s no longer have purpose, potential, or the capacity for meaningful relationship, Where Two Worlds Touch is both a spiritual memoir and a pastoral guide for those who love someone with Alzheimer’s. Readers will find here the reassuring words of a friend who has been there and can give advice on preserving connection, finding hope, self-care, and staying open to the possibility of grace.

ten-thousand-joys-sorrows-book-coverBook: Ten Thousand Joys & Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s by Olivia Ames Hoblitzelle, 2010

In this inspiring memoir, Hoblitzelle describes how her husband’s Alzheimer’s diagnosis at the age of seventy-two challenged them to live the spiritual teachings they had embraced during the course of their life together. A former professor of comparative literature at Barnard, Columbia and Brandeis universities, Harrison Hoblitzelle, or Hob as he was called, became a family therapist after a midlife career shift and was ordained a Dharmacharya (senior meditation teacher) by Thich Nhat Hanh. Hob comes to life in these pages as an incredibly funny and brilliant man who continued to amaze everyone around him with his startling insights about his diminishing mind. Together Hob and Olivia agreed to live this last chapter of his life as consciously and lovingly as possible. The fruit of their journey is this wise and compassionate book, which provides guidance on maintaining hope and grace in the face of life’s greatest challenges.

spirituality and personhoodBook: Spirituality and personhood in dementia by Albert Jewell, 2011

In recent years, there has been a positive shift in attitudes towards caring for older people with dementia, with a new emphasis being placed on the person rather than the problem and towards a relationship-centred rather than individual approach. Within this context of person-centred care, there is a growing recognition of the significance of a person’s spirituality in providing them with a sense of identity and a resource for coping. Spirituality and Personhood in Dementia offers an interdisciplinary discourse on spirituality in dementia care, bringing together wide-ranging contributions from leading theoreticians, theologians, researchers and practitioners. The book provides health care professionals with both a rationale and a practical understanding of the important role spirituality can play in the affirmation of personhood. This comprehensive and thought-provoking collection includes contributions from international authors, discussion of inter-faith relations and spirituality for the non-religious, as well as chapters approaching the subject from Christian and Buddhist perspectives. This book will be valuable reading for nurses, care workers, care commissioners and pastoral support professionals interested in a more holistic and contemplative approach to caring for older people with dementia.

JDCJulyAug2008Article: Soul Sessions by Marjorie Woodbridge, Journal of Dementia Care 16(4), 2008 p.14-15

The author shares her experience of sessions which aim to meet the spiritual needs of people with dementia. Soul Sessions started as an experimental programme to meet the spiritual needs of people with dementia living in a long-term care facility in Kingston, Ontario, Canada. The initial goal of the programme was to find ways of making connections that would help these people to express their feelings about life, love and their relationship with the Divine.

Note: should you be interested in this article please request it through our handy form.

JGN_July2014Article: Revisiting Spirituality in Aging by Barbara J. Edlund, Journal of Gerontological Nursing 40(7), 2014, p.4-5

An analysis on the findings of a number of studies on successful aging and the role of spirituality as a component of aging and care-giving by nurses.

Note: should you be interested in this article please request it through our handy form.

JDCJulyAug2004Article: Understanding spirituality: tuning in to the inner being by Murray Lloyd, Journal of Dementia Care 12(4), 2004, p.25-27

Murray Lloyd discusses a step-by-step approach to a view of dementia care through ‘spiritually enhanced active listening’, engaging fully with the person with dementia in the context of their spiritual needs and expressions.

Note: should you be interested in this article please request it through our handy form.

who_will_i_be_when_i_die_webBook: Who will I be when I die? by Christine Bryden, 1998

For many, Alzheimer’s is a mystery disease affecting old people. Christine Boden was 46 when she was diagnosed with Alzheimer’s and Who Will I Be When I Die?, is the story of her emotional, physical and spiritual journey in the three years since then. Christine is living with the stages of Alzheimer’s and provides a unique insight into how it feels to be gradually losing ability to undertake tasks most of us take for granted. Her story is remarkable because of the vigor with which she is undertaking this latest battle in her life and the purpose and meaning she derives from her Christian spirituality. Christine’s approach to health and well-being makes this book a must for Alzheimer’s sufferers and their families.

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