The caregiving literature provides compelling evidence that caregiving burden and depressive symptoms are linked with stressful care relationships however relational difficulties around caregiving are seldom described in the literature. This paper presents findings from content analysis of baseline interviews with 40 Alzheimer’s disease and Parkinson’s disease spousal caregivers enrolled in a home care skill training trial who identified their care relationship as a source of care burden. Disappointment and sadness about the loss of the relationship; tension within the relationship; and care decision conflicts within the relationship were recurrent themes of relational stress in caregiving. These spousal caregivers had relationship quality scores below the mean and burden and depressive symptom scores above the means of the other caregivers in the study. These findings provide support for developing dyadic interventions that help spouses manage relational losses, care-related tensions and care decision making conflicts.

Although family home care problems are frequently described in the health care literature, the ways in which families and other informal caregivers manage those problems are not often addressed. We conducted a descriptive analysis of interviews in which spouses caring for a partner with Alzheimer’s or Parkinson’s disease were asked to describe difficult home care problems and how they managed those problems. Analysis of these interviews indicated three recurring management styles. Adapters told stories about applying pre-existing skills to manage home care problems. Strugglers told stories of reoccurring home care problems for which they had few or no management strategies. Case Managers’ interview stories focused on the challenges of finding and coordinating home care services. These findings suggest that caregiving burden might be influenced more by the caregiver’s management style than the demands of the care situation. Suggestions for tailoring support programs for the three types of caregivers are proposed.

The ASSIST intervention was effective and inexpensive to the caregiver in direct monetary outlays; thus, there are minimal unintended consequences of the trial on caregiver financial well-being.

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