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.
The specific aims of this administrative supplement proposal are to understand the unique characteristics and needs of caregivers of hospice patients with Alzheimer's disease and related dementias (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. Thus, the study is highly relevant to public health as it affects the health of a continuously growing segment of our population, namely these who are called to assume the essential role of informal caregiving for patients with dementia, and aims to highlight their needs and inform the design of a tailored intervention.
| Chi, Nai-Ching; Demiris, George; Pike, Kenneth C et al. (2018) Exploring the Challenges that Family Caregivers Faced When Caring for Hospice Patients with Heart Failure. J Soc Work End Life Palliat Care :1-15 |
| Wallace, Audrey S; Parker Oliver, Debra; Demiris, George et al. (2018) The Paradox of Hospice for Caregivers of Cancer Patients. J Pain Symptom Manage 56:e8-e11 |
| Washington, Karla T; Demiris, George; Oliver, Debra Parker et al. (2018) Quality Hospice Care in Adult Family Homes: Barriers and Facilitators. J Am Med Dir Assoc 19:136-140 |
| Tarter, Robin; Demiris, George; Pike, Kenneth et al. (2016) Pain in Hospice Patients With Dementia: The Informal Caregiver Experience. Am J Alzheimers Dis Other Demen 31:524-9 |
| Washington, Karla T; Pike, Kenneth C; Demiris, George et al. (2015) Unique characteristics of informal hospice cancer caregiving. Support Care Cancer 23:2121-8 |
| Chi, Nai-Ching; Demiris, George (2015) A systematic review of telehealth tools and interventions to support family caregivers. J Telemed Telecare 21:37-44 |
| Washington, Karla T; Pike, Kenneth C; Demiris, George et al. (2015) Gender Differences in Caregiving at End of Life: Implications for Hospice Teams. J Palliat Med 18:1048-53 |
| Albright, David L; Oliver, Debra Parker; Demiris, George (2015) Reaction to Caregiving by Hospice Caregivers Upon Enrollment. Am J Hosp Palliat Care 32:641-6 |
| Washington, Karla T; Demiris, George; Pike, Kenneth C et al. (2015) Anxiety among informal hospice caregivers: an exploratory study. Palliat Support Care 13:567-73 |
| Washington, Karla T; Wittenberg-Lyles, Elaine; Oliver, Debra Parker et al. (2014) Rethinking family caregiving: tailoring cognitive-behavioral therapies to the hospice experience. Health Soc Work 39:244-50 |
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