A comparison of primary and secondary caregivers of persons with dementia.

Abstract

Having 2 or more relatives involved in the informal care of people with dementia is frequent worldwide. There are, however, few comparisons of primary and secondary caregivers and even fewer of those who are caring for the same person. Our study aimed to contrast these 2 experiences of caregiving. We compared 2 related samples of 61 primary and 61 secondary family caregivers of the same persons with dementia in a nonrandomized cross-sectional study. Caregivers’ main outcome assessments were the Zarit Burden Interview (for subjective burden), the General Health Questionnaire (for psychological distress), and the Positive Aspects of Caregiving scale. We controlled for caregiver variables (e.g., demographics, caregiving arrangements, social support, sense of coherence) and the neuropsychiatric symptoms of dementia. Subjective burden was higher in primary than secondary caregivers (p = .013), but positive aspects of caregiving did not differ (p = .150). Psychological distress was high at clinically relevant levels in primary and secondary caregivers, without statistically significant differences between groups (p = .456). The findings demonstrate that notwithstanding the difficulties faced by primary caregivers, secondary caregivers may also experience clinically significant distress. Therefore, their needs for assistance and support should be addressed more systematically. These findings call for systemic family-focused interventions in dementia that address the support each person provides or might provide, as well as the psychological distress each person may feel.

Positive and negative experiences of caregiving in dementia: The role of sense of coherence

“…A previous study with FAMIDEM data focused on differences between primary and secondary caregivers of people with dementia. SOC was included as a covariate and was inversely associated with psychological distress, but had no significant relation with subjective burden nor positive experiences 24 . There, we found no differences between primary and secondary caregivers in their SOC.…”

“…We re‐analysed data from two prior convenience samples that were part of the FAMIDEM study 23,24 . A detailed description of FAMIDEM methods may be found elsewhere 23 .…”

“…These persons were followed as outpatients in neurology or psychiatry services, hospital and community‐based, in Lisbon, Portugal. Primary caregivers were defined as those family members with the most face‐to‐face contact with the patient during the previous month and who confirmed that they were the primary accountable person 24 . For the current study, we only considered the 99 primary caregivers that had been assessed on our main variable of interest (SOC).…”

“…The primary studies had been approved by ethics committees of all participating institutions 23,24 . Written informed consent was obtained (including from persons with dementia or their representatives when they were unable to consent).…”

“…In the present paper we conduct two secondary analyses of participants in the Families of Persons with Dementia (FAMIDEM) Study 23,24 . Consistent with stress models of caregiving, we consider how SOC—as a psychological resource—influences three important outcomes of caregiving (subjective burden, psychological distress and positive aspects of caregiving).…”