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