Leading Age CEU Application

Title of Program: Meeting Spiritual Needs of People with Dementia and Caregivers

Date of Program: April 7, 2016

Time/Duration of Program: 1.5-hour webinar, 9:30-11 am. 1 Hour CEU RCFE Dementia, 1 hour NHAP/P

Instructor Qualifications: Cordula Dick-Muehlke, Ph.D., is a licensed clinical psychologist with 30 years of experience in working with older adults. She received her doctorate in clinical psychology from Fuller Graduate School of Psychology in 1993. Please see the attached curriculum vitae for more information.

Description of Course: Show how course directly relates to either the business operations or the care of residents in the facility.

Grounded in a biopsychosocial-spiritual perspective on Alzheimer’s disease and other dementias, this session focuses on addressing the spiritual needs of people with dementia, in particular, and their caregivers. Although spirituality is a clear patient need, and impacts quality of life, the spiritual needs of people with dementia are not well understood and often under-addressed in senior living communities beyond the provision of traditional religious services. In the movement towards more person-centered care, the role of spirituality/religion in the individual’s life cannot be left behind. In fact, this session challenges attendees to ponder whether all care is spiritual, i.e., has the potential to enhance or detract from the individual’s humanity. Attendees will learn to differentiate spirituality and religion, assess spiritual needs in people with dementia, and learn several unique activities and approaches to promoting spirituality among cognitively impaired residents. Additionally, in line with the earlier, fourth webinar, in this series on supporting dementia caregivers, this session briefly discusses the important role that spirituality/religion can play positive coping. Several recommendations for promoting spirituality/religious practices among caregivers are made. The course is designed to empower attendees with the knowledge and skills to better address the spiritual needs of people with dementia and their caregivers, as one way to improve quality of life. Finally, this is the finalin a series of six webinars on Alzheimer’s disease and dementia, focusing on meeting spiritual needs as one key component of dementia care.

III. Objective of Course: What is the student expected to know upon completion of this course?

As a result of participating in this course, attendees will be able to

  1. Describe the difference between spirituality and religion. See Section I (1)(c-d)
  2. Identify at least three pieces of information to be gathered during an in-depth spiritual assessment. See Section I (5)(a)(i)(2)(b)below.
  3. Identify two types of programs/activities, other than worship services, to promote spirituality among people with dementia.See Section I (5)(c)(i-iv,vi)below.
  4. Identify at least two benefits of spirituality/religious practices for caregivers. See Section II (6)(c)(i-iv) below.

IV. Teaching Methods: Explain the types of teaching methods to be used.

This presentation will include a lecture using PowerPoint slides, followed by an interactive discussion about the challenges of supporting people with cognitive impairment in independent and assisted living.
A handout of the PPT presentation will also be provided to all webinar participants.

V. Course Content: Hour-by-hour detail of course outline, including instructor for each segment.

Presenter for entire session: Dr. Cordula Dick-Muehlke

Section I –Spirituality in the Lives of People with Dementia (60 minutes)

(1)Framework for the session: A biopsychosocial-spiritual approach

  1. Alzheimer’s disease understood, not solely from a reductionistic, scientific perspective, but holistically, considering its impact on the entire person
  2. Human beings understood as intrinsically spiritual, beings “in relationship”[1]
  3. Or in the words of Teilhard de Chardin, “We are not human beings having a spiritual experience. We are spiritual beings having a human experience.”
  4. Spirit is an integrative presence that permeates and vitalizes every aspect and every dimension of the human person[2]
  5. People with dementia recognized as spiritual beings, with ongoing spiritual needs[3]
  6. Spirituality understood as a broad, encompassing concept
  7. “The way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.”[4]
  8. “The personal quest for understanding answers to ultimate questions about life, about meaning, and about relationship to the sacred or transcendent.”[5]
  9. Not dependent on cognition
  10. “Universal, deeply personal and individual; it goes beyond formal notions of ritual or religious practice to encompass the unique capacity of each individual. It is at the core and essence of who we are, that spark which permeates the entire fabric of the person and demands that we are all worthy of dignity and respect. It transcends intellectual capability, elevating the status of all humanity to that of the sacred.”[6]
  11. Religion understood as one vehicle for spirituality
  12. “A social institution that binds people together, and involves beliefs practices, rituals and symbols that enable relatedness to the sacred or transcendent and the expression of the spiritual.”[7]
  13. An organized system of beliefs, practices, rituals and symbols designed (a) to facilitate closeness to the sacred or transcendent (God, higher power, or ultimate truth/reality), and (b) to foster an understanding of one’s relation and responsibility to others in living together in a community5
  14. Recognition that spiritual/religious beliefs and practices can promote or detract from positive outcomes
  15. In a review of research on religion, spirituality, and health, spanning 1932-2010, 50% to 100% of studies reported positive outcomes (i.e., a better emotional state or health outcome)[8]

Study Focus / Factors Investigated / % High Quality Studies with Positive Outcomes
Positive Mental Health / Well-being, meaning and purpose, hope, optimism, and self-esteem / 50-100%
Negative Mental Health / Depression, suicide, anxiety, substance abuse / 57-90%
Health Behaviors / Exercise, diet, cholesterol, smoking, sexual behavior / 56-90%
Physical Health / Coronary disease, cardiovascular functioning, cancer, mortality / 65-69%
  1. Whether outcomes are positive or negative is influenced by the type of religious coping, as demonstrated in a study of 268 medically ill hospitalized older adults[9]
  2. Improved health at 2 years post hospitalization was associated with positive methods of religious coping (e.g., seeking spiritual support, benevolent religious reappraisals)
  3. Declines in health were associated with negative methods of religious coping (e.g., punishing God reappraisal, interpersonal religious discontent)
  4. Gathering information about the person’s spiritual/faith practices at admission is insufficient; a spiritual assessment must evaluate how beliefs/practices functioned in the person’s life (e.g., beloved child of God vs. worthless sinner).
  1. Spiritual care understood as
  2. “That care which recognizes and responds to the needs of the human spirit when faced with trauma, ill health or sadness . . . Spiritual care begins with encouraging human contact in compassionate relationship, and moves in whatever direction the need requires.”[10]

(2)Alzheimer’s disease and other dementias present spiritual challenges for the affected individuals and their caregivers

  1. Dementia disrupts intra- and extra-personal relationships1
  2. Intrapersonal
  3. Complex network of neurological-biological relationships
  4. Multiple relationships between cognition, mood, behavior, functioning, and the person’s physical state
  5. Extrapersonal
  6. Relationship to the physical environment
  7. Relationship to the interpersonal environment – family, friends, communities
  8. Relationship with the transcendent
  9. Presents a challenge to the integrity of the person
  10. “Suffering occurs when an impending destruction of the person is perceived; it continues until the threat of disintegration has passed or until the integrity of the person can be restored in some other manner . . . . Most generally, suffering can be defined as the state of severe distress associated with events that threaten the intactness of the person.”[11]
  11. Raises inherently spiritual questions regarding meaning of life and may call into question religious beliefs (e.g., feeling angry at/abandoned by God)

(3)Importance of spirituality in the lives of people with dementia demonstrated in research

  1. Among 28 people with dementia, who identified themselves as Protestant, Catholic, Jewish, Christian, Buddhist, and non-religious, spirituality provided guidance, hope in the afterlife, acceptance of the dementia, and relief of anxiety.[12]
  2. Spirituality emerged as an important coping resource among 15 individuals with early stage Alzheimer’s disease, with three common themes[13]
  3. Holding onto personal faith (e.g., relying on God as a means of accepting the diagnosis, relief from worry, and hope)
  4. Seeking reassurance and hope (e.g,. through daily prayer, reading Bible verses)
  5. Staying connected (e.g., continuing to attend church and participate in church work)
  6. In 24 persons with dementia identifying themselves as Catholic, Protestant or Jewish, greater use of religious and spiritual beliefs to cope with the illness was associated with higher quality of life[14]

(4)Spiritual needs of individuals with dementia in long-term care[15]

  1. Maintaining a sense of meaning and purpose
  2. Preserve meaningful connections with the world around them
  3. Have a relationship with God

(5)Ways to facilitate spirituality for people with dementia in the long-term care setting

  1. Spiritual assessment is the necessary beginning point
  2. Spiritual assessment tools have not been adapted to dementia, may require involvement of a caregiver as well as the person with dementia
  3. Simple identification of spiritual/religious tradition is insufficient
  4. Two-step approach[16]
  5. Initial screening at admission (e.g., past religious affiliation)
  6. Followed by a person-centered interview that results in a deep understanding of the role spirituality/religion has played in the individual’s life, conducted by a chaplain or similar professional
  7. What helps you get through (cope with) the hard times in life?
  8. What gives you joy or hope?
  9. How would you describe your relationship to God?
  10. What spiritual/religious practices have been/are particularly meaningful?
  11. Are there spiritual/religious symbols of particular importance?
  12. Are there favorite spiritual/religious texts?
  13. Is the person, or has the person been, part of a church, congregation, or other spiritual/religious community and what role did he/she play (e.g., attendance only vs. wide participation in activities)
  14. Are spiritual/religious practices a source of comfort or stress?
  15. How have spiritual/religious beliefs and practices been affected by the dementia?
  16. What are current spiritual needs?
  17. Continuum of spiritual interventions: Person-centered care is really spiritual care
  18. Relatedness
  19. I-Thou as opposed to I-It relating, rooted in a deep appreciation of the person[17]
  20. Positive person work,[18] a style of interaction that affirms personhood
  21. All care, every interaction
  22. Purpose, meaning, connection
  23. Activities that tap interests and remaining abilities
  24. Individual/group counseling, e.g., spiritual reminiscence (see (b)(i) immediately below)
  25. Self-transcendence
  26. Spiritual activities, not based on a particular religion or belief system
  27. Individual/group counseling(see (b)(i) immediately below)
  28. Religious/spiritual orientation
  29. Activities based on a specific religion or belief
  30. “Ministry,” e.g., worship services, pastoral visits for prayer or communion
  31. Examples of specific approaches to facilitate spirituality in people with dementia
  32. Spiritual reminiscence[19]
  33. A 6-week spiritual reminiscence group that enables participants with dementia to talk spiritual/religious topics
  34. Week 1 - Life meaning
  35. Week 2 - Relationships, isolation, and connecting
  36. Week 3 - Hopes, fears and worries
  37. Week 4 - Growing older and transcendence
  38. Week 5 - Spiritual and religious beliefs
  39. Week 6 - Spiritual and religious practices
    A randomized clinical trial of this 6-week spiritual reminiscence intervention found that participation significantly increased hope, life satisfaction, and spiritual well-being among individuals with mild dementia[20]
  40. Other forms of spiritual reminiscence include building a manager scene or a “Noah’s Ark,” assembling a religious scene puzzle
  41. Sensing the Sacred[21]
  42. A small group worship service based on Montessori Methods, which have been used successfully in dementia
  43. Uses a sensorimotor style of storytelling to experience God, rather than just learn about God
  44. Leader uses simple wooden figures to tell well-known Bible stories, e.g., the Good Shepherd
  45. Service also includes blessing, prayer, and hymn-singing
  46. Postcards to God[22]
  47. Residents make a postcard and include a brief message to God
  48. Message may be written, or an artistic expression (e.g., painting, collage)
  49. Once completed, postcard are collected and symbolically “mailed to God” by placing them in the mail back to the facility
  50. Once received in the mail, the postcards are displayed for residents and staff
  51. Procedural and Emotional Religious Activity Therapy[23]
  52. Individualized spiritual activities that tap preserved abilities in Alzheimer’s disease, specifically procedural memory and the capacity for emotional attachment
  53. Procedural memory, or implicit memory
  54. A form of long-term memory responsible for knowing how to do things, i.e., perform motor skills (e.g., riding a bike, tying a shoe)
  55. Procedural memories are created through "procedural learning" or, repeating a complex activity over and over again until all of the relevant neural systems work together to automatically produce the activity.
  56. You do not need to consciously think about how to perform these skills; you simply do them without much, if any, thought; the routines have become ingrained
  57. Hence, well-learned spiritual/religious routines or practices are likely to be preserved and beneficial, such as
  58. Ritualistic prayer (e.g., reciting the Rosary)
  59. Lighting candles (battery-operated) for prayer requests
  60. Reciting favorite scripture
  61. Stringing prayer flags (Buddhist)
  62. Emotional attachment
  63. People with Alzheimer’s disease retain the ability to connect emotionally long into the disease (e.g., recognizing family and caregivers while not being able to identify them by name or relationship)
  64. Hence, individualized activities that that use emotionally salient items (e.g., religious books or icons) are likely to be successful
  65. Providing a “spiritual ‘teddy bear’ (e.g., Bible, Koran, Rosary, Star of David) can be calming
  66. Develop a “spiritual cart” of spiritual/religious items that can be available[24],[25]
  67. Worship services
  68. Use multiple modalities (cognitive, sensory, physical/movement) to ensure the participation of all individuals
  69. lnvolve familiar hymns, short prayers with repetitive responses (e.g., Lord, hear my prayer), communion
  70. If provided by an external source (e.g., local church), educate about modifying service to the needs and abilities of people with dementia
  71. Other activities that promote spirituality
  72. Spending time in nature, gardening
  73. Listening to music
  74. Group poetry-writing or storytelling tapping spiritual themes, e.g., hope, connection with families
  75. Artistic activities

Section II – Spirituality in the Lives of Caregivers (15 minutes)

(6)Importance of spirituality in the lives of caregivers

  1. Caregivers represent the other half of the illness experience
  2. Supporting caregivers is a critical piece of ensuring a successful placement and long-term care experience, as discussed in-depth in Webinar 4 of this series
  3. Spiritual/religious practices are important to the majority of caregivers
  4. Among 1,229 caregivers of loved ones with moderate-to-severe dementia, 77% prayed nearly every day, 70% perceived their religion/spirituality as a “great deal” important, and 42% attended religious services at least weekly[26]
  5. Benefits of religion/spirituality in dementia
  6. Greater frequency of attendance at religious services, frequency of prayer and medication, and importance of religious faith/spirituality were all significantly related to less depressive symptoms in current caregivers26
  7. Caregivers have described religion/spirituality as keeping them going and serving as a source of strength[27]
  8. A majority of the 14 ethnically and religiously diverse women participating in this study reported using church attendance and prayer as sources of support
  9. African-American caregivers distinguished themselves from their Caucasian peers as they carried on a permanent internal dialogue with God as a means of continued reassurance of support
  10. In Latino caregivers, higher levels of spirituality (i.e., religious service attendance, prayer/medication, spiritual coping) were associated with greater reward, i.e., experiencing positive aspects of caregiving (e.g., providing care makes me appreciate life more)[28]
  11. Among 150 dementia caregivers, a higher level of spiritual well-being was significantly associated with less caregiver burden[29]

(7)Recommendations for long-term care providers

  1. As part of the spiritual assessment, explore the role of religion/spirituality in the caregiver’s life, which may be similar or much different from that of the person with dementia
  2. If religious/spiritual practices play an important role in the caregiver’s life, encourage their use to cope with the burden experienced by caregivers post-placement, as well as ongoing grief and loss
  3. As needed, problem-solve practical barriers to accessing spiritual support (e.g.,
  4. Be sensitive to spiritual needs (e.g., anger with God over the illness) and refer to a spiritual professional to address
  5. Do not be afraid to incorporate spiritual topics/issues in education or support (e.g., support group) programs offered by the senior living community

Section III: Question & Answer/Dialogue with the Speaker (15 minutes)

V.Address and/or Geographic Area Where the Course Will Be Presented: Webinar

VI.Method of Course Evaluation by Participants (explain how participants will evaluate the course): Evaluation form

VII. Method of Evaluating Participants: No evaluation of participants.

VIII. Types of Records to be Maintained and Address Where Records are maintained:Electronic record of attendance and evaluations are maintained at LeadingAge California, 1315 I Street, Suite 100, Sacramento, CA 95814

1

[1]Sulmasy, D. P. (2002). Gerontologist, 42 (Special Issue III), 24-33

[2]Swinton, J. (2001). Spirituality and mental health care. London: Jessica Kingsley Publishers

[3]Fogg Berry, K. (2005). Age in Action, 20,1-15

[4]Puchalski, C., et al. (2009). Journal of Palliative Medicine, 10, 885-904

[5]Koenig, H.G., et al. (2000). Handbook of religion and health. New York: Oxford University Press.

[6]McSherry, W. & Smith, J. (2012). Spiritual care. In McSherry, W., et al. (Eds.). Care in nursing principles, values and skills. Oxford: Oxford University Press.

[7]Daly, L., & Fahey-McCarthy, E. (2014). British Journal of Nursing, 23, 787-791

[8]Koenig, H. G. (2015). Advances in Mind Body Medicine, 29, 19-26

[9]Pargament, K. I., et al. (2004). Journal of Health Psychology, 9, 713-730.

[10] National Health Service Education for Scotland (2009). Spiritual care matters: An introductory course for all NHS Scotland staff. Available at