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Nursing Ethics, Vol. 14, No. 5, 608-619 (2007)
DOI: 10.1177/0969733007080206

Ethical and Methodological Issues in Interviewing Persons With Dementia

Ingrid Hellström

Ersta Sköndal University College, Stockholm, Sweden, ingrid.hellstrom{at}esh.se

Mike Nolan

University of Sheffield, Sheffield, UK

Lennart Nordenfelt

Linköping University, Linköping, Sweden

Ulla Lundh

Linköping University, Linköping, Sweden

People with dementia have previously not been active participants in research, with ethical difficulties often being cited as the reason for this. A wider inclusion of people with dementia in research raises several ethical and methodological challenges. This article adds to the emerging debate by reflecting on the ethical and methodological issues raised during an interview study involving people with dementia and their spouses. The study sought to explore the impact of living with dementia. We argue that there is support for the inclusion of people with dementia in research and that the benefits of participation usually far outweigh the risks, particularly when a `safe context' has been created. The role of gatekeepers as potentially responsible for excluding people with dementia needs further consideration, with particular reference to the appropriateness of viewing consent as a primarily cognitive, universalistic and exclusionary event as opposed to a more particularistic, inclusive and context relevant process.

Key Words: dementia • ethical considerations • informed consent


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