Handbook of Research Methods in Health Social Sciences pp 1991-2005 | Cite as
Researching with People with Dementia
Undertaking research with people with dementia has historically been perceived as problematic, especially as the condition advances and where there are concerns over capacity to make decisions and give informed consent. Much research that does include people with dementia as participants tends to focus on people early on in the condition. By not involving people with dementia across the trajectory of the condition, we are failing to develop important understandings from the perspectives of people living with the condition across a range of research topics. Furthermore, by not involving people with dementia throughout the research process, we may not be exploring the most relevant research topics or not considering the most relevant methods and approaches to capture their experiences. There is an increased understanding on the importance of involving people with dementia in all aspects of the research process, but the challenge remains on how to do so in a meaningful and ethical way. Researchers are beginning to explore these challenges in the literature. This chapter will draw upon the evidence base as well as personal experience in the UK to consider approaches to consent and a range of diverse approaches and methods that seek to include rather than exclude people living with dementia throughout the research process.
KeywordsDementia Research Involvement Ethics Consent Qualitative
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