Including older people with dementia in research: Challenges and strategies

This paper examines key challenges and strategies for including older people with dementia in an ethnographic study of quality of life in institutional care settings. The methods of interview and observation are described in relation to meeting four research challenges: verbal communication impairment, memory loss, decision-making capacity, and emotional disposition. A range of strategies for privileging the voice of the person with dementia is recommended which include: using different methods bespoke to each person with dementia; greater flexibility and time; preliminary meetings with the person with dementia; discussions with formal and informal carers; and research training. The researchers also conclude that the use of observation and interview are 'meaning-making occasions' which are qualitatively different but equally valuable for understanding quality of life in care settings.