Roach Pamela, Drummond Neil, Keady John
Department of Family Medicine, University of Alberta, Edmonton, AB, Canada.
Department of Family Medicine, University of Alberta, 1702 College Plaza, Edmonton, AB, Canada T6G 2C8.
J Aging Stud. 2016 Jan;36:26-32. doi: 10.1016/j.jaging.2015.12.001. Epub 2016 Jan 12.
Family interaction and intergenerational dynamics have been known to influence the efficacy of therapeutic interventions and as such, the understanding of such dynamics in the experience of transitions can assist in strengthening the support provided to families living with such diagnoses. As such, the aims and objectives of this work were to develop a deeper understanding of family transition in early-onset dementia and to construct a representative model of this experience.
This qualitative study used an 'initial-and-follow-up' interview design with semi-structured in-depth interviews in participants' homes. A framework approach to qualitative data analysis was used in order to identify important points of transition in the family experience of early-onset dementia and how families frame and respond to their own health expectations.
Nine families provided written informed consent to participate in the study. The nine participating families were made up of 20 participants, including nine spousal pairs and two young adult children. Each family participated in two research interviews in their individual homes. Four major themes emerged from the data: Diagnosis; Finances; Relationships; and Meaningful Activity.
Transitions experienced by families in early-onset dementia can be significantly impacted by the opportunity and availability of meaningful activity and/or a purposeful role. Not only does this activity benefit both the person with dementia and their family, but also supports much needed home and community living for people with dementia, as demonstrated by predicted future bed shortages in Canadian hospitals and long term care facilities.
已知家庭互动和代际动态会影响治疗干预的效果，因此，了解这些动态在转变过程中的情况有助于加强对患有此类疾病的家庭的支持。因此，本研究的目的是更深入地了解早发性痴呆症患者家庭的转变情况，并构建这种经历的代表性模型。
本定性研究采用“初始访谈和后续访谈”的设计，在参与者家中进行半结构化深度访谈。采用定性数据分析的框架方法，以确定早发性痴呆症患者家庭经历中的重要转变点，以及家庭如何构建和回应自己的健康期望。
九个家庭提供了书面知情同意书参与研究。九个参与家庭由20名参与者组成，包括九对配偶和两名成年子女。每个家庭在各自家中参加了两次研究访谈。数据中出现了四个主要主题：诊断；财务；关系；以及有意义的活动。
早发性痴呆症患者家庭所经历的转变可能会受到有意义活动和/或有目的角色的机会和可获得性的显著影响。正如加拿大医院和长期护理机构预计未来床位短缺所表明的那样，这种活动不仅有益于痴呆症患者及其家庭，还支持痴呆症患者急需的居家和社区生活。
