Skip to main content

Faith and Spirituality: Supporting Caregivers of Individuals with Dementia

  • Chapter
  • First Online:
Caregiving for Alzheimer’s Disease and Related Disorders

Abstract

The number of Americans currently afflicted with Alzheimer’s disease (AD) will reach crisis proportions in the future. The current number of approximately 5.4 million Americans is predicted to quadruple by the year 2047. One in eight people over age 65 have the disease, and nearly half have it by age 85. Someone new is diagnosed with the disease every 69 s (Alzheimer’s Association, 2011). Caregivers face stressful challenges in providing care for relatives with dementia, as average length of caregiving exceeds 8–10 years.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 109.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 109.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Alzheimer’s Association. (2011). Alzheimer’s from the frontlines: Challenges a national Alzheimer’s plan must address (pp. 1–38). Washington, DC: Alzheimer’s Association.

    Google Scholar 

  • Bacon-Moore, A. S., Paulsen, J. S., & Murphy, C. (1999). A test of odor fluency in patients with Alzheimer’s and Huntington’s disease. Journal of Clinical and Experimental Neuropsychology, 21, 341–351.

    Article  PubMed  Google Scholar 

  • Bell, V., & Troxel, D. (1999). The other face of Alzheimer’s disease. American Journal of Alzheimer’s Disease, 14(1), 60–64.

    Article  Google Scholar 

  • Bell, V., & Troxel, D. (2001). Spirituality and the person with dementia: A view from the field. Alzheimer’s Care Quarterly, 2(2), 31–45.

    Google Scholar 

  • Bergquist, S., & King, J. (1994). Parish nursing: A conceptual framework. Journal of Holistic Nursing, 12, 155–170.

    Article  PubMed  Google Scholar 

  • Berry, D. (2005). Methodological pitfalls in the study of religiosity and spirituality. Western Journal of Nursing Research, 27(5), 628–647.

    Article  PubMed  Google Scholar 

  • Biddix, V., & Brown, H. N. (1999). Establishing a parish nursing program. Nursing and Health Care Perspectives, 20(2), 72–75.

    PubMed  Google Scholar 

  • Bond, J. (1999). Quality of life for people with dementia: Approaches to the challenge of measurement. Aging and Society, 1(9), 561–579.

    Article  Google Scholar 

  • Brooker, D. J., Snape, M., Johnson, E., Ward, D., & Payne, M. (1997). Single case evaluation of the effects of aromatherapy and massage on disturbed behavior in severe dementia. The British Journal of Clinical Psychology, 36, 287–296.

    Article  PubMed  Google Scholar 

  • Cain, D., & Russell, B. (1995). Blessed are the caregivers: Practical advice and encouragement for those providing care to others. Prospect, KY: NB Publishing and Marketing, Inc.

    Google Scholar 

  • Carson, V. B., & Green, H. (1992). Spiritual well-being: A predictor of hardiness in patients with acquired immunodeficiency syndrome. Journal of Professional Nursing, 8(4), 209–220.

    Article  PubMed  Google Scholar 

  • Chang, B., Noonan, A. E., & Tennstedt, S. L. (1998). The role of religion/spirituality in coping with caregiving for disabled elders. The Gerontologist, 38(4), 463–470.

    Article  PubMed  Google Scholar 

  • Clarke, J. (2009). A critical view of how nursing has defined spirituality. Journal of Clinical Nursing, 18(12), 1666–1673.

    Article  PubMed  Google Scholar 

  • Collins, W. L. (2004). A personal reflection on long distance secondary caregiving: Spirituality as a strength. Social Work and Christianity, 31(3), 295–303.

    Google Scholar 

  • Collins, W. L., Holt, T. A., Moore, S. E., & Bledsoe, L. K. (2003). Long-distance caregiving: A case study of an African-American family. American Journal of Alzheimer’s Disease and Other Dementias, 18(5), 309–315.

    Article  PubMed  Google Scholar 

  • Coward, D. D. (1991). Self-transcendence and emotional well-being in women with advanced breast cancer: Review and analysis. The Gerontologist, 37, 355–364.

    Article  Google Scholar 

  • Coward, D. D. (1994). Meaning and purpose in the lives of persons with AIDS. Public Health Nursing, 11, 331–336.

    Article  PubMed  Google Scholar 

  • Coward, D. D., & Lewis, F. M. (1993). The lived experience of self-transcendence in gay men with AIDS. Oncology Nursing Forum, 20(9), 1363–1368.

    PubMed  Google Scholar 

  • Crumbaugh, J. C. (1968). Cross validation of purpose-in-life test based on Frankl’s concepts. The Journal of Individual Psychology, 24, 74–81.

    Google Scholar 

  • Dilworth-Anderson, P., Williams, S. W., & Cooper, T. (1999). Family caregiving to elderly African Americans: Caregivers types and structures. Journal of Gerontology: Series B, Psychological Sciences & Social Sciences, 54B, S237–S241.

    Article  Google Scholar 

  • Dungee-Anderson, D., & Beckett, J. O. (1992). Alzheimer’s disease in African American and White families: A clinical analysis. Smith College Studies in Social Work, 62, 115–168.

    Article  Google Scholar 

  • Ellison, C. W. (1983). Spiritual well-being: Conceptualization and measurement. Journal of Psychology and Theology, 11(4), 330–340.

    Google Scholar 

  • Everett, D. (1996). Forget me not: The spiritual care of people with Alzheimer’s Disease. Edmonton: Inkwell Press.

    Google Scholar 

  • Farran, C. J., Keane-Hagerty, E., Salloway, S., Kupferer, S., & Wilden, C. S. (1991). Finding meaning: An alternative paradigm for Alzheimer’s disease family caregivers. The Gerontologist, 31, 483–489.

    Article  PubMed  Google Scholar 

  • Farran, C. J., Miller, B. H., Kaufman, J. E., & Davis, L. (1997). Race, findings, meanings, and caregiver distress. Journal of Aging and Health, 9, 316–333.

    Article  PubMed  Google Scholar 

  • Farran, C. J., Paun, O., & Elliott, M. H. (2003). Spirituality in multicultural caregivers of persons with dementia. Dementia, 2(3), 353–377. doi:. 10.1177/14713012030023005

    Article  Google Scholar 

  • Frankl, V. (1963). Man’s search for meaning. Boston: Beacon.

    Google Scholar 

  • Frankl, V. (1978). The unheard cry for meaning. New York: Washington Square Press.

    Google Scholar 

  • George, L. K., Larson, D. B., Koenig, H. G., & McCullough, M. E. (2000). Spirituality and health: What we know, what we need to know. Journal of Social and Clinical Psychology, 19, 102–116.

    Article  Google Scholar 

  • Gwyther, L. (1995). You are one of us: Successful clergy/church connections to Alzheimer’s families. Durham, NC: Duke University Medical Center.

    Google Scholar 

  • Hall, E. T. (2000). Caring for a loved one with Alzheimer’s disease: A Christian perspective. Binghamton, NY: Haworth Press.

    Google Scholar 

  • Hebert, R. S., Dang, Q., & Schulz, R. (2007). Religious beliefs and practices are associated with better mental health in family caregivers of patients with dementia: Findings from the REACH study. The American Journal of Geriatric Psychiatry, 15(4), 292–300.

    Article  PubMed  Google Scholar 

  • Hide, K. (2002). Symbol ritual and dementia. Journal of Religious Gerontology, 13(3), 77–90.

    Article  Google Scholar 

  • Higgins, P. (2005). Bringing spiritual light into dementia. Journal of Dementia Care, 13(2), 10–11.

    Google Scholar 

  • Hoge, D. R. (1972). A validated intrinsic religious motivation scale. Journal of the Scientific Study of Religion, 11, 369–376.

    Article  Google Scholar 

  • Hutch, R. L., Burg, M. A., Naberhaus, D. S., & Hellmich, L. K. (1998). The spiritual involvement and beliefs scale. The Journal of Family Practice, 46, 476–486.

    Google Scholar 

  • Kaye, J., & Robinson, K. M. (1994). Spirituality among caregivers. Image—The Journal of Nursing Scholarship, 26(3), 218–221.

    Article  PubMed  Google Scholar 

  • Killick, J. (2006). Helping the flame to stay bright: Celebrating the spiritual in dementia. Journal of Religion, Spirituality & Aging, 18(2), 73–78. doi:10.1300/J496v18n02.

    Article  Google Scholar 

  • Kilpatrick, S. D., Weaver, A. J., McCullough, M. E., Puchalski, C., Larson, D. B., Hays, J. C., et al. (2005). A review of spiritual and religious measures in nursing research journals: 1995–1999. Journal of Religion and Health, 44(1), 55–66.

    Article  PubMed  Google Scholar 

  • Kitwood, T. (1997). Demenita Reconsidered: The person comes first. Mc Graw Hill. ISBN–10: 0335198554,

    Article  PubMed  Google Scholar 

  • Lazarus, R., & Folkmans, S. (1984). Stress, appraisal and coping. New York: Springer.

    Google Scholar 

  • Levin, J. S., Chatters, L. M., & Taylor, R. J. (1995). Religious effects on health status and life satisfaction among Black Americans. Journal of Gerontology: Series B, Psychological Sciences & Social Sciences, 50B, S154–S163.

    Article  Google Scholar 

  • MacKinlay, K. (2002). Listening to people with dementia: A pastoral care perspective. Journal of Religious Gerontology, 13(3–4), 91–106.

    Google Scholar 

  • MacNeil, G., Kosberg, J. I., Durkin, D. W., Dooley, W. K., DeCoster, J., & Williamson, G. M. (2010). Caregiver mental health and potentially harmful caregiving behavior: The central role of caregiver anger. The Gerontologist, 50(1), 76–86.

    Article  PubMed  Google Scholar 

  • Matthes, B. P. H. (2001). The role and extent of involvement of Anglican parish based priests in the care of older people with dementia and their families: An exploratory study. Dissertation Abstracts, University of London, King’s College, London.

    Google Scholar 

  • Maugans, T. (1996). The spiritual history. Archives of Family Medicine, 5(1), 11–16.

    Article  PubMed  Google Scholar 

  • McCurdy, D. B. (1998). Personhood, spirituality, and hope in the care of human beings with dementia. The Journal of Clinical Ethics, 9, 81–91.

    PubMed  Google Scholar 

  • McElligott, D. (2010). Healing: The journey from concept to nursing practice. Journal of Holistic Nursing, 28(4), 251–259. doi:10.1177/0898010110376321.

    Article  PubMed  Google Scholar 

  • McSherry, W., & Cash, K. (2004). The language of spirituality: An emerging taxonomy. International Journal of Nursing Studies, 41(2), 151–161. doi:10.1016/S0020-7489(03)00114-7.

    Article  PubMed  Google Scholar 

  • Metzger, S. M. (2000). Parish nursing: Integrating body, mind and spirit. Nursing, 30(12), 64.

    Google Scholar 

  • Miller, B., Campbell, R. T., Farran, C. J., Kaufman, J. E., & Davis, L. (1995). Race, control, mastery, and caregiver distress. Journal of Gerontology: Series B, Psychological Sciences & Social Sciences, 50B(6), 5374–5382.

    Google Scholar 

  • Mooney, S. F. (2004). A ministry of memory: Spiritual care for the older adult with dementia. Care Management, 5(3), 183–187.

    Article  Google Scholar 

  • Mui, A. (1992). Caregiver strain among Black and White daughter caregivers: A role theory perspective. Gerontology, 32(2), 203–212.

    Article  Google Scholar 

  • Mull, C. S., Cox, C. L., & Sullivan, J. A. (1987). Religion’s role in the health and well-being of well elders. Public Health Nursing, 4(3), 151–159.

    Article  PubMed  Google Scholar 

  • Murphy, C. J. (1997). Dementia care and the churches: Involving people and premises. Stirling, Scotland: Dementia Development Center University.

    Google Scholar 

  • National Institute on Aging/Fetzer Institute Working Group. (1997). Measurement scale on religion, spirituality, health, and aging. Bethesda, MD: National Institute on Aging.

    Google Scholar 

  • Pargament, K. I. (1997). The psychology of religion and coping: Theory, research, practice. New York: The Guilford Press.

    Google Scholar 

  • Payne, B. P. (1982). Religiosity. In D. J. Mangen & W. A. Peterson (Eds.), Research instruments in social gerontology (Vol. 2, pp. 343–352). Minneapolis, MN: University of Minnesota Press.

    Google Scholar 

  • Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583–594.

    Article  PubMed  Google Scholar 

  • Pesut, B., Fowler, M., Taylor, E. J., Reimer-Kirkham, S., & Sawatzky, R. (2008). Conceptualising spirituality and religion for healthcare. Journal of Clinical Nursing, 17(21), 2803–2810. doi:10.1111/j.1365-2702.2008.02344.x.

    Article  PubMed  Google Scholar 

  • Picot, S. J., Debanne, S. M., Namazi, K. H., & Wykle, M. L. (1997). Religiosity and perceived rewards of Black and White caregivers. The Gerontologist, 37, 89–101.

    Article  PubMed  Google Scholar 

  • Post, S. G. (2000). The moral challenge of Alzheimer disease. Baltimore: The Johns Hopkins University Press.

    Google Scholar 

  • Rabins, P. V., Fitting, M. D., Eastham, J., & Fetting, J. (1990). The emotional impact of caring for the chronically ill. Psychosomatics, 31(3), 331–336.

    Article  PubMed  Google Scholar 

  • Rabins, P. V., Fitting, M. D., Eastham, J., & Zabora, J. (1990). Emotional adaptation over time in caregivers of chronically ill elderly people. Age and Aging, 19, 185–190.

    Article  Google Scholar 

  • Reed, P. G. (1987). Spirituality and well-being in terminally ill hospitalized adults. Research in Nursing and Health, 11, 335–344.

    Article  Google Scholar 

  • Reed, P. G. (1991). Self-transcendence and mental health in oldest-old adults. Nursing Research, 40(1), 5–11.

    Article  PubMed  Google Scholar 

  • Reed, P. G. (1994). Response to “The relationship between spiritual perspective, social support, and depression in caregiving and noncaregiving wives”. Scholarly Inquiry for Nursing Practice: An International Journal, 8(4), 391–396.

    Google Scholar 

  • Richards, M. (2000). Communicating “soul to soul”—Challenges for care providers. Southwest Journal of Aging, 15:2/16:1, 3–6.

    Google Scholar 

  • Ries, D. T. (1993). Caregivers and the ministry of Alzheimer’s disease. American Journal of Alzheimer’s Care and Related Disorders, 8(6), 31–36.

    Article  Google Scholar 

  • Robinson, K. M., Ewing, S., & Looney, S. (2000). Clergy support and caregiver expectations for support: A replication study. American Journal of Alzheimer’s Disease, 15(3), 180–189.

    Article  Google Scholar 

  • Robinson, K. M., & Kaye, J. (1994). The relationship between spiritual perspective, social support, and depression in caregiving and noncaregiving wives. Scholarly Inquiry for Nursing Practice, 8(4), 375–389.

    PubMed  Google Scholar 

  • Roche, L. (1996). Coping with caring: Daily reflections for Alzheimer caregivers. Forest Knolls, CA: Elder Books.

    Google Scholar 

  • Roger, K. S. (2006). A literature review of palliative care, end of life, and dementia. Palliative & Supportive Care, 4(3), 295–303.

    Article  Google Scholar 

  • Ryan, E. B., Martin, L. S., & Beaman, A. (2005). Communication strategies to promote spiritual well-being among people with dementia. The Journal of Pastoral Care & Counseling, 59(1–2), 43–55.

    Google Scholar 

  • Sapp, S. (1999). “To see things as God sees them”: Theological reflections of pastoral care to persons with dementia. Journal of Health Care Chaplaincy, 8, 25–43.

    Article  PubMed  Google Scholar 

  • Sessanna, L., Finnell, D. S., Underhill, M., Change, Y. P., & Peng, H. L. (2011). Measures assessing spirituality as more than religiosity: A methodological review of nursing and health-related literature. Journal of Advanced Nursing, 67(8), 1677–1694. doi:10.1111/j.1365-2648.2010.05596.x.

    Article  PubMed  Google Scholar 

  • Spurlock, W. R. (2005). Spiritual well-being and caregiver burden in Alzheimer’s caregivers. Geriatric Nursing, 26(3), 154–161.

    Article  PubMed  Google Scholar 

  • Stolley, J. M., Buckwalter, K. C., & Koenig, H. G. (1999). Prayer and religious coping for caregivers of persons with Alzheimer’s disease and related disorders. American Journal of Alzheimer’s Disease, 14(3), 181–191.

    Article  Google Scholar 

  • Stuckey, J. C. (1998). The church’s response to Alzheimer’s disease. Journal of Applied Gerontology, 17(1), 25–37.

    Article  Google Scholar 

  • Stuckey, J. C. (2003). Faith, aging, and dementia: Experiences of Christian, Jewish, and non-religious spousal caregivers and older adults. Dementia, 2, 337–352.

    Article  Google Scholar 

  • Teixeira, M. E. (2008). Self-transcendence: A concept analysis for nursing praxis. Holistic Nursing Practice, 22(1), 25–31.

    PubMed  Google Scholar 

  • Teusink, J., & Mohler, S. (1984). Helping families cope with Alzheimer’s disease. Community Psychiatry, 35(2), 152–156.

    Google Scholar 

  • Uwakwe, R. (2000). Knowledge of religious organizations about dementia and their role in care. International Journal of Geriatric Psychiatry, 15, 1152–1157.

    Article  PubMed  Google Scholar 

  • Wainright, D. (1995). Living with dementia: A discussion pack for Christians. Derby: Christian Council on Aging.

    Google Scholar 

  • Wentrobe, D. P. (1999). Pastoral care of problematic Alzheimer’s and dementia affected residents in long-term care setting. Journal of Health Care Chaplaincy, 8, 59–76.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Karen Meier Robinson PhD, PMHCNS, BC, FAAN .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2013 Springer Science+Business Media New York

About this chapter

Cite this chapter

Robinson, K.M. (2013). Faith and Spirituality: Supporting Caregivers of Individuals with Dementia. In: Zarit, S., Talley, R. (eds) Caregiving for Alzheimer’s Disease and Related Disorders. Caregiving: Research • Practice • Policy. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-5335-2_6

Download citation

Publish with us

Policies and ethics