People With Dementia: The Challenges for Data Collection With a Vulnerable Population


The term “dementia” covers a range of degenerative neurological conditions that lead to severe cognitive decline along with a broad spectrum of accompanying behavioral and psychological symptoms. Conventional pharmacological treatments for these symptoms and the underlying pathophysiologies are limited and can lead to undesirable side effects. There is, therefore, an increasing interest in research into the effectiveness of non-pharmacological complementary medicines, including music therapy, herbal medicine, and lifestyle modifications such as physical activity and diet. However, there are a number of challenges inherent in conducting research involving people who have dementia and their families, such as low recruitment and high attrition rates, communication difficulties, managing expectations of families, and challenges associated with the collection of physiological data. In this case, we discuss research we have conducted involving the use of music and qualitative interviews in people with mild to more severe dementia and suggest some pragmatic strategies for dealing with the difficulties we have encountered in conducting such research.

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