H.I.L.DE: The Heidelberg Instrument for Assessing Quality of Life in Dementia Sufferers (2003-2009)
Development of an instrument for the multidimensional assessment of quality of life in nursing home residents suffering from dementia.
The instrument is intended to be easy to use and aims to support both caregivers’ sensitivity for and capability to actively promote various aspects of residents’ well-being and satisfaction to gain maximum acceptance in nursing home care.
During the first empirical stage of the project, various quality-of-life dimensions identified in the literature were discussed with residents, carers and relatives. A combination of retrospective ratings, behavioural observation, videography and clinical testing was adopted to contrast various sources of information and methodological accounts. In a second empirical phase, the most relevant information was organized in questionnaire form. This instrument was then administered to another sample of nursing home residents with dementia and the results were then used to further refine both the content and methodology. This version of the instrument was then tested for its psychometric properties in selected nursing homes with various repeated measurement, multi-rater and control-intervention designs. With minor modifications suggested by these pilots, the instrument was used to assess quality-of-life aspects for more than a thousand residents with various patterns of remaining competences and evaluated by practitioners in more than a hundred nursing homes throughout Germany and Switzerland.
The final version now available of the instrument is an optimised version based on the results of practical evaluation. It was found that the HILDE instrument is indeed an easy-to-use and worthwhile tool for examining residents’ well-being under a wide range of circumstances. It has been reported to increase carers’ sensitivity to dementia sufferers’ needs and emotional states, even in the advanced stages of the disease. Beyond a mere assessment of quality of life in dementia patients, nursing staff competence and resident well-being have also been boosted by the instrument. A large proportion of the establishments involved in the project intend to continue using HILDE as part of their quality management routines even after conclusion of the project.
A manual is currently being developed to do away with the need for instruction by external experts before implementing the HILDE method.
Publications and Materials
A documentation of the Conference “Quality of Life in Dementia – Assessment, Intervention, Ethics and Law”, hosted by the Heidelberg research team on May 19, 2008 is now available (in German).
Prof. Dr. Johannes Pantel
Dr. rer. nat. Julia Haberstroh
Clinic for Psychiatriy, Psychosomatics and Psychotherapy
Johann Wolfgang Goethe University Frankfurt am Main
Heinrich-Hoffmann Str. 10
Prof. Dr. Thomas Klie
Dipl. Soz. Birgit Schuhmacher
Gerontology & Care Centre
(Arbeitsschwerpunkt Gerontologie und Pflege, AGP)
The Protestant University of Applied Sciences Freiburg
Bugginger Str. 38