Integrity Perserving Care of Persons with Alzheimer's Disease and Their Families - Health Promoting Longitudal Contr. Intervention Study, 2012

Identity preserving care of persons with AD and their families.
Identity preserving care aims at helping persons with AD to maintain a sense of being oneself and a worthy person with meaning ful relations. When a family member has AD all family members are affected and their life situation changes. Ways of coping with difficulties differ during disease phases. The organization of care for person living at home today lacks continuity which often leaves families alone after the diagnosis until extensive support is needed. It seems urgent to cover that period and try to find new ways of organize and lead the care, which is what our intervention is attempting to.

Design.
The study is longitudinal and controlled. To combine use of evidence based scientific knowledge with proven knowledge (Sackett et al 1996) participatory action research is applied, and the project is performed in close collaboration with persons with AD, their families and personnel.

Intervention.
Health promoting family dialogues are performed 3 times the first 2 month after the diagnosis. After this the health promoting dialogues are repeated after six months and when family asks for it. The dialogues focus on identifying patterns and relationships within the family, the actual life situation and available resources, suffering and vulnerability in the family, views on past present-future and hope. The foci can vary between dialogues depending on what the family presents as important. The dialogues are characterised by continuous improvement, listening, and sharing. The dialogue sessions are reflected on and tape recorded.

Data collection.
Individual interviews are performed with all participants. Instruments for pre- and post assessments.
Persons with AD: Instruments to assess cognitive, emotional, and functional ability, wellbeing, ill-being, quality of life and use of antidementia drugs use of sedative, and health

阿尔茨海默病（Alzheimer's Disease，AD）患者及其家属的身份保留照护。
身份保留照护旨在帮助阿尔茨海默病患者维持自我认同感，成为拥有富有意义人际关系的有价值个体。当家庭成员罹患阿尔茨海默病时，所有家庭成员都会受到影响，生活境况也随之改变。在疾病的不同病程阶段，应对困境的方式存在差异。当前居家照护的组织模式缺乏连续性，往往在患者确诊后便让家属独自承担照护责任，直至需要大规模支持时才介入。填补这一照护空白、探索新型照护组织与管理路径，正是本研究干预措施的核心目标。

研究设计：本研究为纵向对照研究。本研究采用参与式行动研究方法，将循证科学知识与已验证知识（Sackett等，1996）相结合，并与阿尔茨海默病患者、家属及照护人员开展紧密协作完成项目实施。

干预方案：在患者确诊后的前2个月内，开展3次健康促进家庭对话。此后，每间隔6个月或应家属需求时，重复开展此类健康促进对话。对话聚焦于梳理家庭内部的互动模式与关系结构、家庭实际生活境况与可利用资源、家庭所面临的痛苦与脆弱性，以及成员对过去、现在与未来的看法与期许。对话的核心主题可根据家属提出的重点需求灵活调整。此类对话以持续改进、倾听与分享为核心特征，所有对话环节均会被记录并开展反思复盘。

数据收集：对所有研究参与者开展个体访谈，并采用标准化工具开展干预前后的评估。针对阿尔茨海默病患者的评估工具涵盖认知、情绪与功能能力，幸福感、不良情绪状态，生活质量，以及抗痴呆药物、镇静剂使用情况与健康状况相关指标。