| Learning Objective #1: Discuss values of family members for end-of-life care of their elder with advanced dementia | |||
| Learning Objective #2: Discuss stressors of family caregivers providing end-of-life care to their elder with advanced dementia |
Objective: To explore the personal goals, values and stressors of family caregivers serving as surrogate decision makers for institutionalized cognitively impaired elders near the end of life.
Design: Qualitative research using focus groups. Each focus group was guided through a discussion addressing (1) relationships between caregivers and residents, (2) making decisions, (3) the resident's future, (4) goals, (5) beliefs, (6) values, and (7) resolving conflicts.
Setting: Nursing homes in Minnesota.
Participants: Thirty-nine family members of cognitively impaired nursing home residents.
Results: Three major findings emerged from the analysis of the focus group transcripts: (1) Participants described their personal goals and how they attempted to achieve a balance between these personal goals and their goals for the care of their dependent elderly family members. The personal goals were principally in two domains: the caregivers' relationships – both with the elder and with others – and the caregivers' own well-being. (2) The caregivers also described the values that were behind their goals: the most consistently invoked values were love, duty and respect. (3) The participants also described the significant stressors that affected them in their roles as caregivers. These included stress related to guilt over the admission to the nursing home; stress rooted in the ongoing deterioration of their loved one; stress related to conflicts in goals and/or values and stress related to multiple time commitments, family conflicts, and interaction with health care providers.