Zhang Xiaohong, Wang Mingzhen, Chen Kaiyue, Shi Na, Cui Xia, Yang Zhicheng, Chen Feifei, Lin Xingfeng
School of Nursing and Rehabilitation, Shandong University, Jinan, Shandong, China.
Department of Psychiatry, Shandong Mental Health Center, Shandong University, Shandong Provincial Key Medical and Health Discipline of Gerontology, Jinan, Shandong, China.
J Alzheimers Dis. 2024;101(3):937-950. doi: 10.3233/JAD-240629.
Alzheimer's disease and related dementias (ADRD) are progressive conditions. Family caregivers of patients, especially those caring for patients with ADRD exhibiting behavioral and psychological symptoms of dementia (BPSD), undergo significant physical and mental changes during long-term care. While most researchers have focused on the specific needs of family caregivers, the comprehensive understanding of these needs is limited. In this study, Alderfer's existence, relatedness, and growth theory was used to develop an interview framework to systematically and comprehensively understand the needs of family caregivers of individuals with ADRD.
The objective of this study was to understand family caregivers' needs in coping with BPSD in individuals with ADRD, aiming to alleviate caregivers' stress and promote their overall well-being.
This study used a hermeneutic-phenomenological interview research design. Data were collected via remote conferences involving interviews with 17 participants selected via maximum variation sampling. The Colaizzi seven-step method was utilized, and the interview contents were analyzed using NVivo 12.0 software.
The needs of family caregivers in coping with the BPSD of individuals with ADRD could be summarized into three themes, namely existence needs, relatedness needs, and growth needs, and 10 sub-themes.
The study findings provide new insights into the needs of family caregivers in coping with patients exhibiting BPSD. Family caregivers experience significant negative emotions, poor caregiving experiences, heavy caregiving burdens, and a desire for professional assistance and policy support.
阿尔茨海默病及相关痴呆症（ADRD）是渐进性疾病。患者的家庭照护者，尤其是那些照护表现出痴呆行为和心理症状（BPSD）的ADRD患者的照护者，在长期照护过程中会经历显著的身心变化。虽然大多数研究人员关注家庭照护者的特定需求，但对这些需求的全面理解仍然有限。在本研究中，使用阿尔德弗的生存、关系和成长理论来构建一个访谈框架，以系统、全面地了解ADRD患者家庭照护者的需求。
本研究的目的是了解家庭照护者在应对ADRD患者BPSD方面的需求，旨在减轻照护者的压力并促进其整体幸福感。
本研究采用诠释现象学访谈研究设计。通过远程会议收集数据，这些会议包括对通过最大差异抽样选出的17名参与者进行访谈。采用科莱齐七步法，并使用NVivo 12.0软件对访谈内容进行分析。
ADRD患者家庭照护者在应对BPSD方面的需求可归纳为三个主题，即生存需求、关系需求和成长需求，以及10个子主题。
研究结果为家庭照护者应对表现出BPSD的患者的需求提供了新的见解。家庭照护者经历着显著的负面情绪、糟糕的照护体验、沉重的照护负担，以及对专业援助和政策支持的渴望。
