The Grief Experience of Spousal and Adult Child Caregivers of Individuals Diagnosed with Alzheimer’s Disease or Related Dementias Following Facility Placement
Date of Award
Doctor of Philosophy
Counselor Education and Counseling Psychology
Dr. Jennifer Foster
Dr. Stephen Craig
Dr. Patricia Reeves
Although institutionalization has been identified as a critical loss point for familial caregivers of individuals diagnosed with Alzheimer’s disease or related dementias (ADRD), there is a paucity of literature regarding how spousal and adult child caregivers experience grief following the transition of care. This deficit is particularly concerning as the number of individuals diagnosed with ADRD is expected to increase significantly, the vast majority of individuals diagnosed are cared for by family members, and facility placement is a common occurrence as the disease progresses. Given that supporting a loved one with ADRD following placement creates a unique context for connection and loss, it is critical that helping professionals have an understanding of grief as it is experienced by this population. Unfortunately, despite promoting the ideals of wellness and prevention across the lifespan, professional counselors and counselor educators have not made a sufficient attempt to research and effectively respond to this experience.
To address the knowledge gap identified above, this study explores how spousal and adult child ADRD caregivers make sense of their grief following facility placement. Through an Interpretative Phenomenological Analysis of in-depth, semi-structured interviews with five adult children and six spouses, idiographic and group level findings are identified and discussed. The following four superordinate and 14 subordinate themes are articulated in the results: (1) Grief Intensified: Personal, Familial, and Occupational Dynamics - (1.1) Role Reversal: Relational Displacement, (1.2) Competing Stressors: Work, Family, and Care, (1.3) Managing Own Health: Navigating Personal Limitations, and (1.4) Family Tensions: Care Related Disputes; (2) Grief Redirected: Dispersion, Internalization, and Externalization - (2.1) Shared Placement Decision: Dispersed Responsibility, (2.2) Grief Avoidance: Dismissing Affect and Being Strong, and (2.3) Caregiver Identity: Putting Others First; (3) Grief Experienced and Expressed: Ambiguity in Emotion, Cognition, and Action - (3.1) Contextual Ambiguity: Tension, Inconsistency, and Confusion, (3.2) Mixed Affect: Relief and Difficult Emotions, (3.3) Questioning: Doubt, Fear, and Uncertainty, (3.4) Acceptance: Coming to Terms with Loss, and (3.5) Interpersonal Limbo: Holding on and Letting Go; and (4) Grief Shared: Supremacy of Informal Supports - (4.1) Informal Supports: Task Assistance, Interpersonal Encouragement, and Grief Processing, and (4.2) Formal Supports: Not Utilized. Variations in this thematic experience are noted at an individual level, as well as at a group level based upon the caregiver’s relationship to the care recipient (e.g. spouse or adult child).
Having responded to a clear deficiency in the research, the findings of this study contribute significantly to the understanding of the post-placement grief experience of spousal and adult child caregivers of individuals diagnosed with ADRD. Drawing upon this phenomenological clarification, implications for the training and practice of counselors are outlined. The need and potential areas for future research are also discussed based upon the findings and limitations of this study. Through intentional application and further exploration of these findings, counselor educators and professional counselors will be better positioned to facilitate the wellbeing of spousal and adult child caregivers following the transition of care.
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Clay, Andrew D., "The Grief Experience of Spousal and Adult Child Caregivers of Individuals Diagnosed with Alzheimer’s Disease or Related Dementias Following Facility Placement" (2018). Dissertations. 3317.