Chronic Diseases Research Centre, Nova Medical School/Faculdade de Ciencias Medicas, Universidade Nova de Lisboa.
Department of Human Development and Family Studies, Penn State University.
Psychol Aging. 2020 Feb;35(1):20-27. doi: 10.1037/pag0000380.
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 ( = .013), but positive aspects of caregiving did not differ ( = .150). Psychological distress was high at clinically relevant levels in primary and secondary caregivers, without statistically significant differences between groups ( = .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. (PsycINFO Database Record (c) 2020 APA, all rights reserved).
有 2 个或更多的亲属参与照顾痴呆患者在世界范围内是很常见的。然而，很少有对初级和次级照顾者进行比较的研究，甚至更少对照顾同一人的初级和次级照顾者进行比较。我们的研究旨在对比这两种照顾经验。我们在一项非随机的横断面研究中比较了 61 名初级和 61 名次级家庭照顾者的两个相关样本，这些照顾者照顾的是同一个痴呆患者。照顾者的主要结果评估是照顾者负担量表（用于主观负担）、一般健康问卷（用于心理困扰）和照顾的积极方面量表。我们控制了照顾者的变量（例如，人口统计学、照顾安排、社会支持、连贯性感）和痴呆的神经精神症状。初级照顾者的主观负担高于次级照顾者（p=0.013），但照顾的积极方面没有差异（p=0.150）。初级和次级照顾者的心理困扰均处于临床相关水平，但组间无统计学差异（p=0.456）。研究结果表明，尽管初级照顾者面临困难，但次级照顾者也可能经历临床显著的困扰。因此，应更系统地满足他们的援助和支持需求。这些发现呼吁对痴呆症进行以家庭为中心的系统干预，既要关注每个人提供或可能提供的支持，也要关注每个人可能感到的心理困扰。（PsycINFO 数据库记录（c）2020 APA，保留所有权利）。
