Boogaard Jannie A, van der Steen Jenny T, de Boer Alice H, van Groenou Marjolein I Broese
1 Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands.
2 Department of General Practice & Nursing Home Medicine, VU University Medical Center, Amsterdam, The Netherlands.
Am J Hosp Palliat Care. 2019 Nov;36(11):1008-1015. doi: 10.1177/1049909119836932. Epub 2019 Apr 14.
Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving.
To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers' burden of care and positive experiences and explain differences in outcomes.
Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses.
The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care.
Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model.
Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.
为患有危及生命疾病的老年人提供姑息治疗通常涉及非正式照护者，但姑息治疗文献很少关注非正式照护的消极和积极方面。
评估接近生命末期（EOL）和痴呆症照护与非正式照护者的照护负担及积极体验之间的关联，并解释结果差异。
从一项具有全国代表性的横断面调查中选取了1267名社区居住老年人的非正式照护者的数据，并使用方差分析和多变量回归分析进行分析。
采用非正式照护自我感知压力量表和积极体验量表来评估照护者的负担以及提供照护的积极体验。
相对于常规照护，无论是否处于生命末期，痴呆症照护都与最高的照护者负担相关。非生命末期的痴呆症照护与最少的积极体验相关，而生命末期非痴呆症照护与最多的积极体验相关。根据Pearlin压力应对模型，只有照护负担的差异可以由与压力源相关的变量来解释。
痴呆症患者的非正式照护者不仅面临高照护负担的风险，而且还可能错过与生命末期照护相关的积极体验。未来的研究应探讨与痴呆症相关的因素如何减少积极的照护体验，以便使姑息治疗成为为社区居住的痴呆症患者提供非正式照护者的积极现实。
