Duration: 2015 -2018

Funding: DZNE

Principal investigator: Margareta Halek

Project coordination: Claudia Dinand

Scientific staff: Martin Berwig

 

Background

The behavioral variant frontotemporal dementia (bvFTD) is a young onset and progressive subtype of frontotemporal lobardegenerations (FTLD) and is associated with strong changes in judgment, behavior, personality and emotions. These changes vary individually and have an impact on the daily lives of those affected and their families. Psychosocial interventions are important and indispensable components in the care of people with FTD and are most effective if they match the specific needs and requirements of the persons concerned. At present, the evidence of these interventions could not be demonstrated. Thus, it is essential to generate further knowledge and insights into frontotemporal dementia as a lived experience.

Aim and Research Interest

The aim of this study is identifying, collecting and consolidating practical knowledge and clinical expertise from multiprofessional perspectives to constitute the basis for further development and evaluation of psychosocial interventions for the care of people with bvFTD.

Methods

An explorative and reconstructive design is chosen and includes three steps:

1. Development of a literature-based guideline for conducting interviews

2. Consultation of elected informal and formal experts/ stakeholders with multiprofessional backgrounds to explore hidden practical knowledge and clinical expertise with the following data collection methods (Figure 1)

  • Focus groups with relatives / nurses or other therapists, possibly interdisciplinary
  • Guided individual interviews (selected persons, inter- and cross disciplinary)
  • Analysis of self-presentations of people with bvFTD in blog entries

3. Data analysis and –synthesis includes the identification, arrangement and graduation of the categories of applied interventions for each data source.

The findings will be compared to each other and synthesized by conceptual and theoretical interpretation regarding their potential for a good or best-practice.

Expected Results

Through this project, previously inaccessible sources of knowledge and experience for the care of people with bvFTD are brought together, systematically ordered and recommended for further evaluation. This fills a gap within the health care research. The results are prepared for publication. If necessary, an action guide will be developed.