Barriers and Facilitators to Preparedness for Death: Experiences of Family Caregivers of Elders with Dementia

• Published in: Journal of social work in end-of-life & palliative care Vol. 15; no. 1; pp. 55 - 74
• Main Authors: Hovland, Cynthia A., Kramer, Betty J.
• Format: Journal Article
• Language: English
• Published: United States Routledge 01.01.2019; Taylor & Francis Ltd
• Subjects: Aged; Aged, 80 and over; Alzheimer's; Barriers; Caregivers; Caregivers - psychology; Caregiving; Content analysis; Death; Death & dying; Death and dying; Dementia; Dementia - epidemiology; end-of-life; Families & family life; Family - psychology; Female; Hospice care; Hospice Care - organization & administration; Humans; Impending; Male; Medical diagnosis; Middle Aged; Occupational roles; Older people; Patient Comfort - methods; Qualitative Research; Relatives; Religious beliefs; Social work; Socioeconomic Factors; end-of-life; caregivers; dementia; social work; Alzheimer’s; Death and dying
• ISSN: 1552-4256; 1552-4264
• DOI: 10.1080/15524256.2019.1595811

Less is known about how caregivers prepare (or not) for the death of a family member with dementia. This study's purpose was to explore how caregivers handle these dementia deaths, including identification of barriers and facilitators to preparing caregivers for the death of an elder family member dying with dementia. This qualitative, descriptive study employed a purposive sampling strategy in which the principal investigator interviewed 36 caregivers of family members age 65 and older who died from a dementia-related diagnosis. Directed content analysis was used to analyze the data. Four primary themes were identified as barriers: (1) hindrances to information; (2) barriers to hospice; (3) ineffective attempts to comfort; and (4) the nature of death with dementia. Six themes were identified as facilitators: (1) religious/spiritual beliefs; (2) caregiver initiative; (3) prior experience; (4) bearing witness to decline; (5) professionals alerting caregiver (of what to expect of impending death); and (6) culture and legacy of family caregiving. The results support an increased role of social work in addressing caregivers' awareness of impending death and helping prepare them for the death of an elder with dementia.