1. Disenfranchised Grief and Dementia: Preliminary Results of a Coaching Intervention to Empower Caregivers
P. MacCourt
Centre on Aging, University of Victoria
Victoria, British Columbia
M. McLennan
Seniors & Spiritual Health
Vancouver Island Health Authority
Nanaimo, British Columbia

2. Disenfranchised grief is defined as:
  “a grief that persons experience when they sustain a loss that is not or cannot be openly acknowledged, publicly mourned or socially supported”, “ losses that are not appreciated by others.” (Kenneth J. Doka 1993/2004)
Disenfranchised grief can occur when (1) the relationship is not recognized, (2) the loss is not recognized, or (3) the griever is not recognized. (Doka)

3. Experience of Grief for Caregivers
Perceived burden results from unresolved grief
Grief occurs because of progressive losses resulting from dementia
Caregiver grief associated with cognitive decline is not well understood
The experience of grief during caregiving and its’ impact on caregivers is an understudied area in dementia research
Dempsey and Sylvia (1998) suggest much of what caregivers express as burden is actually unresolved grief. Doka and Aber (1989) state that being a witness to the gradual “death” of a loved one’s personal identity and memory from dementia brings a unique form of grief that is associated with persistent and unexpected losses preceding bodily death, and is distinct from anticipatory grief of death.
Grief in dementia originates from losses in the quality of the relationship, roles, control, well-being, intimacy, health status, social interaction, communication, and opportunities to resolve issues from the past (Loos & Bowd, 1997; Sanders & Corley, 2003).

4. Context of Caregiving GRIEF Limited supports Caregiver risk factors
Restricted ability to provide care
Loved one placed in care facility
Increased health care costs
GRIEF
The main source of care for individuals with dementia is family members and friends who live in the community. These individuals provide 75% to 85% of the care needed by Canadian seniors who are in poor mental and physical health.
The toll that caregiving takes on the family and its members has been well documented. Caregiving has been associated with a wide range of physical and psychosocial symptoms (e.g., depression, stress, burden, fatigue, feelings of anger, guilt, grief and loss, frustration, loneliness, isolation, and a decrease in well-being and life satisfaction).
These symptoms place the physical and mental health of the caregiver, and their ability to continue to care for their family member, at risk.
If the caregiver is unable to manage the care of their family member, the placement of the person with dementia, into a care facility, may be accelerated.
With increased numbers of the population in care facilities, there are associated costs to the health care system
However, for dementia there is another variable occurring in the greater context of caregiving provided by family members. (CLICK). By addressing grief, our intervention hopes to minimize the contextual transition and ease the burden for caregivers

5. Objectives
Examine a coaching intervention, informed by Meuser and Marwit’s Caregiver Grief Model, on caregivers’ levels of grief, sense of empowerment, coping and resilience
Identify helpful or unhelpful factors in the coaching experience
Compare the cost of delivering a coaching intervention across five formats
Translate and disseminate the knowledge developed into practical resources to inform service providers and caregivers
Caregiver Grief Inventory
The Meuser and Marwit Caregiver Grief Inventory will be administered at the point the participant is referred for the study, and again following the intervention. This 50 item questionnaire is an empirically derived instrument based on spouse and adult child caregiver statements obtained under controlled conditions, designed to measure the grief experience of family members caring for a relative with a dementia. The instrument is psychometrically supported by factor analytical techniques and demonstrates high internal consistency reliability. Psychometrically it divides into three components useful for both assessment and intervention: Personal Sacrifice Burden; Heartfelt Sadness and Longing, and, Worry and Felt Isolation. Cronbach’s alpha for the total score was 0.915: those for Personal Sacrifice Burden; Heartfelt Sadness and Longing, and, Worry and Felt Isolation were 0.834, and 0.779, respectively.
Empowerment Questionnaire
The Empowerment Questionnaire, a self-report questionnaire developed by Man (1998) and modified with the authors permission by McGee and Tuokko (2005) for use with family caregivers of persons with dementia, will be administered prior to and following the intervention. This questionnaire assesses how well individuals perceived themselves to be in control of, and able to master, various stressful life situations. This scale reflects that empowerment is both process and outcome, can be experienced at the individual, family and community levels, and includes the following conceptually-derived five factors: 1) efficacy - skills/abilities and strategies; 2) support - outlook/attitude, belief system, and supports; 3) knowledge - knowledge of and access to information and external resources; 4) aspiration - anticipation and preparation for future caregiving; and 5) community - influence over conditions that impact people who share neighborhoods, workplaces, experiences or concerns. In the original study by Man (1998) with 211 families caring for a brain-damaged member, the internal consistency for the whole Empowerment Questionnaire and the four dimensions of the conceptual framework ranged from 0.76 – These values compare well with widely accepted standards of reliability.
Brief COPE Inventory
Coping strategies will be measured prior to and following the intervention with the Brief COPE (Carver, 1997), an abbreviated version of the original 60-item COPE Inventory (Carver, Scheier, & Weintraub, 1989), designed to assess how people respond to or cope with stressful situations. This 28-item shortened version takes 5-10 minutes to complete and was selected to minimize the time-demands placed on caregivers participating in the study. The Brief COPE assesses 14 conceptually different coping strategies by having respondents indicate what they generally do when they experience stressful events in their life and how often they do it. The 14 conceptual scales include: self-distraction; active coping; denial; substance use; use of emotional support; use of instrumental support; behavioural disengagement; venting; positive reframing; planning; humor; acceptance; religion; and self-blame. The factor structure of the Brief COPE has been shown to be very similar to that reported for the original 60-item version and all scales meet acceptable alpha reliabilities of .50 or higher (Nunnally, 1978).
Resilience Scale
The Resilience Scale (Wagnild and Young, 1993), a 25-item scale that measures the degree of individual resilience, which is considered a positive personality characteristic that enhances individual adaptation, will be administered prior to and following the intervention. The scale is empirically derived from a sample of community-dwelling older adults. Principal components factor analysis of the RS was conducted followed by oblimin rotation indicating that the factor structure represented two factors (Personal Competence and Acceptance of Self and Life). Positive correlations with adaptational outcomes (physical health, morale, and life satisfaction) and a negative correlation with depression supported concurrent validity of the RS. Internal consistency reliability and concurrent validity values of the Resilience Scale compare well to acceptable standards of reliability.
Translate and disseminate the knowledge developed into practical resources to inform service providers about caregiver grief and appropriate and cost effective interventions and caregivers about the nature of grief associated with caring for someone with a dementia and to provide suggestions for managing grief.

6. Methods – Research Design
A mixed method design
Intervention group
Comparison group
Intervention and comparison participants in three British Columbia Health Authorities identified from Alzheimer’s Society of British Columbia or in response to newspaper advertisement

7. Methods – Intervention
Five intervention formats
Individual face-face
Individual by telephone
Face-face group
Telephone group
Online group
Pre and post-intervention quantitative measures to determine caregivers’ levels of grief, sense of empowerment, coping and resilience
Post-intervention qualitative semi-structured interviews to explore participants’ experiences of the intervention
Those receiving the group interventions will be placed into groups for spouses and groups for adult children. Group sizes will not exceed 8.
The group interventions will be 6 sessions of 1.5 hours.
Those receiving the individual intervention will receive 1-8 sessions of 1 hour based on the coach’s assessment.

8. Participant Demographics
Intervention (n=113)
Comparison (n=72)
Caregiver age (mean)
63.72
66.45
Female caregiver
80%
78%
Married
76%
90%
University graduates
37%
22%
Care-recipient age (mean)
79.54
75.87
Female care recipient
49%
36%
Caregiving for spouse
53%

9. Preliminary Results
Intervention
Comparison
Grief
p=0.005*
p=0.160
Coping
p=0.000*
p=0.219
Empowerment
p=0.370
Resilience
p=0.908
Intervention has significant effects on caregivers’ levels of grief, coping, sense of empowerment, and resilience using paired t-tests from Time 1 to Time 2

10. Discussion of Findings
Caregivers who feel empowered and increase their coping skills and resilience, are likely to stay healthier during and after their caregiving careers
Individuals with a dementia who are being cared for by their family caregivers will have a safer journey through the disease because their caregivers will be healthier and more able to look after family member’s needs as well as their own
The capacity of the formal care system to support grieving caregivers by providing service providers with the tools and knowledge to recognize and address disenfranchised grief is increased
Given the growing population of people affected by dementia, the savings to the health care system that can be achieved by supporting caregivers appropriately are likely to be very substantial

11. Future Directions
Continue recruiting until150 participants for intervention and comparison groups is reached
Identify helpful or unhelpful factors in the coaching experience through content analysis of post-intervention semi-structured interviews
Explore participants hesitation to select telephone and online intervention formats
Questionnaire in progress
Develop guidelines to assist health care providers to identify caregivers of individuals with dementia with high levels of grief, and to intervene appropriately
Upon completion, compile costs of delivering the coaching intervention across the five formats