A Problem Solving Intervention for Hospice Caregivers

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Abstract In recent years, the demand for hospice care has increased significantly, and is now provided to over 1.5 million terminally ill Americans annually. In 2017 18% of all people admitted to hospice in the US had a primary hospice diagnosis of dementia and more than one third of them had a primary diagnosis of Alzheimer's Disease or related dementia (ADRD). An essential component of hospice care services includes the informal caregivers, i.e., family members, spouses, friends or others who assume the caregiving role for a loved one at the end of life (hereafter referred to as simply caregivers). Caregivers of ADRD patients face particularly stressful demands associated with the extended length of care, potential behavioral problems common in late- stage dementia, and the extreme impairment and debilitation of patients with end-stage ADRD. More than half of caregivers of patients with end stage dementia have to end or reduce employment and exhibit very high levels of depressive symptoms. Interventions to provide support and facilitate coping during the end stages of ADRD, and efforts to understand how socio-demographic factors and social support may elucidate the effectiveness of such efforts, are notably lacking. We are currently testing a problem-solving therapy intervention entitled PISCES (Problem Solving Intervention to Support Caregivers in End of Life Care Settings) aiming to assess whether a hybrid platform for its delivery combining in-person and video- conferencing sessions can be as effective as the in-person delivery of the intervention. While this work involves all hospice caregivers, a significant sample portion (almost one third) includes caregivers of ADRD patients. Given their unique experiences we recognize the need to study this population in greater detail. The specific aims of this administrative supplement proposal are to understand the unique characteristics and needs of caregivers of hospice patients with ADRD, explore how socio-demographic factors, social support and caregiver type (based on a communication typology) affect the overall hospice experience specifically for caregivers of ADRD patients, and refine and tailor the PISCES intervention jointly with caregivers of patients with ADRD to specifically address their needs.