Frewer-Graumann Susanne
Institut für Gerontologie, TU Dortmund, Evinger Platz 13, 44339, Dortmund, Deutschland.
Z Gerontol Geriatr. 2020 Feb;53(1):3-9. doi: 10.1007/s00391-019-01643-y. Epub 2019 Nov 11.
Most people with dementia live in private homes and are supported by their relatives. Current figures estimate that the number of people with dementia will continue to increase over the next years. In comparison to other groups of people that care for their relatives, those taking care of people with dementia face a substantially higher burden due to changes that are typically associated with dementia. Relatively little is known on how relatives of people with dementia manage their support arrangements, which strategies they follow and which structures are perceived as helpful or obstructive in their daily routine.
The aim of this study was to provide insights into the structure of support arrangements from the perspective of the main caregiver. The results show in which areas of life the main caregivers experience the greatest cuts and which strategies they use to overcome these problems.
In this context 14 in-depth interviews were carried out with relatives who were the main caregivers of people with dementia. The interviews were evaluated in a research group using the techniques of grounded theory.
All aspects of life were affected by the decision to take care of people with dementia. To what extent the caregivers are affected by these decisions subjectively differs from individual to individual. All interviewees reported that the biggest challenge was to find a balance between taking care of others and self-care; however, such a balance does not always succeed for the caregivers' health and sustainability of support arrangements but nevertheless is of enormous importance. At the same time there is evidence of the circumstances under which caregivers make use of professional help and thus contribute to the sustainability of the support arrangements.
The findings show that unsustainable support arrangements cannot only be seen as a lack of adaptability on the part of the caregivers to the progression of dementia. The realization of sustainable arrangements is multidimensional and multicausal.
大多数痴呆症患者居住在私人住宅中，并由其亲属提供照料。目前的数据估计，在未来几年里，痴呆症患者的数量将持续增加。与照顾其他亲属的人群相比，照顾痴呆症患者的人由于痴呆症通常伴随的变化而面临着更高的负担。关于痴呆症患者的亲属如何安排照料事宜、他们遵循哪些策略以及哪些结构在日常生活中被认为是有帮助的或有阻碍的，我们所知相对较少。
本研究旨在从主要照料者的角度深入了解照料安排的结构。研究结果表明了主要照料者在生活的哪些方面感受到了最大的压力，以及他们用来克服这些问题的策略。
在这种背景下，对14名作为痴呆症患者主要照料者的亲属进行了深度访谈。访谈在一个研究小组中运用扎根理论技术进行评估。
照料痴呆症患者的决定影响了生活的方方面面。照料者在主观上受这些决定影响的程度因人而异。所有受访者都表示，最大的挑战是在照顾他人和自我照顾之间找到平衡；然而，对于照料者的健康和照料安排的可持续性而言，这种平衡并非总能实现，但它仍然非常重要。同时，有证据表明了照料者在何种情况下会利用专业帮助，从而有助于照料安排的可持续性。
研究结果表明，不可持续的照料安排不能仅仅被视为照料者对痴呆症进展缺乏适应能力。实现可持续的安排是多维度且多因素的。
