Department of Psychiatry and Neuropsychology/Alzheimer Center Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the Netherlands.
Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, the Netherlands.
Aging Ment Health. 2022 Feb;26(2):277-285. doi: 10.1080/13607863.2020.1857697. Epub 2020 Dec 16.
Frontotemporal dementia (FTD) has a profound impact on the spouse and other family caregivers involved. While caregivers have a need for support, it is difficult for healthcare providers to respond to their specific needs. This qualitative study explores the lived experiences and needs of caregivers of persons with FTD to facilitate the development of support.
Three focus group discussions were organized to explore the lived experiences of Dutch FTD caregivers. The included caregivers ( = 24) were aged 16 years or older and were involved in the care of a relative with FTD. Two researchers independently performed an inductive content analysis using open and axial coding.
The main category emerging from the data was a lack of recognition, acknowledgment, and understanding experienced by caregivers. This was linked to caregivers' experiences with (1) complex emotional and behavioral symptoms in the person with FTD, (2) the trivializing responses of family and friends, (3) a perceived lack of knowledge and support from healthcare professionals, and (4) the bureaucratic procedures that accompany caregiving. As a result, caregivers felt lonely and solely responsible for the caregiving role.
Caregivers of persons with FTD experience a lack of understanding in caring for their relative with FTD, which contributes to feelings of loneliness. A specialized support approach is needed to address the specific needs of caregivers of persons with FTD. Support should address strategies that caregivers can use to inform and involve family and friends in the caregiving situation to prevent loneliness in FTD caregivers.
额颞叶痴呆（FTD）对患者的配偶和其他家庭成员照顾者有深远的影响。虽然照顾者需要支持，但医疗保健提供者难以满足他们的特定需求。这项定性研究旨在探索 FTD 患者照顾者的生活经历和需求，以促进支持的发展。
组织了三次焦点小组讨论，以探讨荷兰 FTD 照顾者的生活经历。纳入的照顾者（ = 24）年龄在 16 岁及以上，参与照顾患有 FTD 的亲属。两名研究人员使用开放式和轴向编码进行独立的归纳内容分析。
数据中出现的主要类别是照顾者所经历的缺乏认可、承认和理解。这与照顾者的以下经历有关：（1）患者 FTD 中复杂的情绪和行为症状；（2）家人和朋友的轻视反应；（3）医护人员知识和支持的感知缺乏；（4）照顾带来的官僚程序。因此，照顾者感到孤独，独自承担照顾责任。
FTD 患者的照顾者在照顾患有 FTD 的亲属时感到缺乏理解，这导致他们感到孤独。需要一种专门的支持方法来满足 FTD 照顾者的特定需求。支持应该解决照顾者可以用来告知和让家人和朋友参与照顾情况的策略，以防止 FTD 照顾者感到孤独。
