Year: 2020
Type: article
Abstract: Background Young‐onset (age < 65) dementias, especially the Frontotemporal Dementia spectrum of diseases and young‐onset Alzheimer’s disease, are often rapidly progressive and have unique caregiving demands. Educational tools for caregivers often are inconsistent and may not adequately help people envision future challenges . The study objective is to examine the acceptability of video decision aids for caregivers of people with young‐onset dementia. Method We conducted focus groups of caregivers for people with young‐onset dementia, separated by early, moderate, and late stage. Eleven video decision aids total (six per group), each focused on a caregiving topic, were shown. After each video, participants answered six questions about acceptability and then responded to open‐ended questions to explain their ratings. Descriptive statistics were calculated, and themes were summarized. Result Four focus groups have been completed (n=8, 4 mild, 4 moderate). On a scale of 1 (strongly disagree) to 5 (strongly agree), the mean (SD) ratings were 3.4 (0.43) for learning something new, 2.1 (0.65) for made me feel uncomfortable, 3.7 (0.35) for made me want to learn more, 4.2 (0.58) for how much already knew about this topic, 4.1 (0.42) for important to learn more, 4.4 (0.36) for recommend to others. Videos about talking to your loved one about not driving, choosing a skilled nursing facility, goals of care in advanced dementia, and thinking about medical decisions had the most positive mean ratings. Caregivers reported preferring visual images that match their loved one’s age group, wanting access to information earlier, and preferring to receive access to videos from their healthcare provider. While similar overall, caregivers in the moderate stage reported learning more from an introduction to caregiving video (moderate M=3.25; mild M=2) and more discomfort for the video about stopping driving (moderate M=2.75; mild M=1.75) compared to caregivers in the mild stage. Conclusion Video decision aids may be an acceptable way to convey information about the unique caregiving demands of those caring for loved ones with young‐onset dementia. Empowering caregivers with information about anticipated medical decisions may reduce caregiver burden and stress, allowing for higher quality of care for loved ones.
Source: Alzheimer s & Dementia
DOI: 10.1002/alz.041986
Institutions: Massachusetts General Hospital, Boston Medical Center
Language: English
Subfield: Psychiatry and Mental health
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W3111172025