Collecting Self-Report Data with People with Dementia: Benefits, Challenges, and Best Practice

In this British study, 33 researchers working on dementia trials in care homes completed an online, qualitative questionnaire outlining their experiences and the perceived benefits and challenges of data collection from people with dementia (as opposed to only collecting data from caregivers or family member proxies).

Five main benefits from obtaining the direct perspective of people with dementia in research were identified: (1) improving the delivery of person-centered care, (2) hearing the voices of people with dementia, (3) residents spending time with researchers, (4) improving researcher understanding, and (5) having an evidence base from multiple sources. Five main challenges also were identified: (1) effective communication, (2) fluctuating capacity, (3) distress to residents, (4) time pressures, and (5) staff availability. Input from the interviewed researchers provided ideas on methods for collecting data that can overcome the challenges. The authors concluded that thorough training for researchers on data collection from people with dementia is important for ensuring successful data collection.

Perfect D, Griffiths AW, Vasconcelos Da Silva M, et al. Collecting self-report research data with people with dementia within care home clinical trials: Benefits, challenges and best practice. Dementia 2019; Aug 29:1471301219871168. doi: 10.1177/1471301219871168. [Epub ahead of print].