STEPS TO H.O.P.E.: BUILDING HEALTH, OPTIMISM, PURPOSE, AND ENDURANCE IN PALLIATIVE CARE FOR FAMILY CAREGIVERS OF PERSONS WITH DEMENTIA

Abstract

Currently over 5 million Americans are living with Alzheimer's disease and related dementias. Family caregivers may experience loss and grief, leading to ambiguity in their caregiving role. Palliative care interventions are necessary to help family members cope with the progressive and unsurmountable grief experiences with these terminal conditions. It is hypothesized that caregivers who participate in the Steps to H.O.P.E. program will experience a reduction in ambiguous loss, stress, and burden, and identify self-care measures to improve overall health and well-being. Steps to H.O.P.E. is an education program and interventional research study at Banner Alzheimer's Institute, Phoenix, Arizona. Boundary Ambiguity and Ambiguous Loss theories guide the theoretical framework for this program. Ambiguous Loss Theory postulate that ambiguous loss, which happens when a person with dementia is physically present but sometimes psychologically absent, may contribute to caregiver stress, anxiety, compromised coping, and the inability to initiate self-care strategies necessary for successful caregiving. Four pilot groups of 8 to 10 caregivers of persons with dementia received weekly focused discussion and guidance regarding ambiguous loss and grief over a four-week period. Program evaluation and caregiver outcomes analysis in this convenience sample consisted of descriptive analyses, paired t-tests, and repeated measures ANOVA. Results from this 12 month program with 4 pilot groups (n=37) showed a reduction in both caregiver stress and strain (F=26.88, p<0.001) and ambiguity related to pilot group affiliation (F=44.82, p<0.001). Qualitative findings indicated numerous self-care strategies and program tools that were helpful to caregivers in managing the stress, burden and grief associated with ambiguous loss including physical exercise, self-talk, asking for help, and taking breaks throughout the day. Understanding this unique loss through education and problem-solving strategies may help family caregivers begin to effectively manage their loss and grief with the tools and resources necessary to reduce ambiguity, promote resilience and foster self-care.