Abstract
Background: In people with dementia, neuropsychiatric symptoms (NPSs), especially agitation, are associated with worse quality of life and caregiver burden. As NPSs may vary with illness severity, knowledge of how people with dementia and their caregivers describe and rate the importance of agitation symptoms can improve the understanding of the clinical meaningfulness of the manifestations of agitation. The internet provides new opportunities to better understand patient experiences, as patients and caregivers increasingly look to Web-based platforms as a means of managing symptoms. Objective: The aim of this study was to examine Web-based reports from a dementia symptom website to better understand the symptoms of agitation and explore how they are being targeted for monitoring by caregivers of people with dementia. Methods: The Dementia Guide website hosts a Web-based database used by caregivers (97%) and people with dementia (3%). From its 61 dementia symptoms, users can select relevant symptoms that they deem important to monitor or track the effects of treatment. We employed a staging algorithm to determine if individuals had mild cognitive impairment (MCI) or mild, moderate, or severe dementia. Agitation was defined using terms consistent with the International Psychogeriatrics Association’s provisional consensus definition. We compared the proportion of people with NPSs and agitation across stages of dementia severity and studied how many agitation-defining descriptors were selected, and how often they occurred, by stage. Results: As of March 2017, 4121 people had used the tracking tool, of whom 2577 provided sufficient data to allow disease severity staging. NPSs were tracked by 2127/2577 (82.54%) and agitation by 1898/2577 (73.65%). The proportion in whom agitation was tracked increased with increasing cognitive impairment: 68.5% (491/717) in people with MCI, and 72.50% (754/1040), 73.3% (378/516), and 90.5% (275/304) in mild, moderate, and severe dementia, respectively (χ2 3=54.9; P<.001). The number of NPS and agitation descriptors selected also increased with severity (median number of NPSs=1, 2, 2, and 3 for MCI, mild, moderate, and severe dementia, respectively, Kruskal-Wallis H Test H3=250.47; P<.001; median number of agitation descriptors=1, 2, 3, and 4, H3=146.11; P<.001). Conclusions: NPSs and agitation are common targets for tracking over the course of dementia and appear more frequently with increasing disease severity. These common and distressing symptoms represent clinically meaningful targets in treating people with dementia.
| Original language | English |
|---|---|
| Article number | e13360 |
| Journal | Journal of Medical Internet Research |
| Volume | 21 |
| Issue number | 6 |
| DOIs | |
| Publication status | Published - Jun 1 2019 |
Bibliographical note
Funding Information:In addition to academic and hospital appointments, KR is President and Chief Science Officer of DGI Clinical, which in the last 5 years had contracts with pharma and device manufacturers (Baxter, Baxalta, Biogen, Shire, Hollister, Nutricia, Roche, and Otsuka) on individualized outcome measurement. In 2017, he attended an advisory board meeting with Lundbeck. Otherwise, any personal fees are for invited guest lectures, rounds and academic symposia, received directly from event organizers, for presentations on frailty. He is the Associate Director of the Canadian Consortium on Neurodegeneration in Aging, which is funded by the Canadian Institutes of Health Research (CNA-137794), with additional funding from the Alzheimer Society of Canada and several other charities, as well as from Pfizer Canada and Sanofi Canada (in phase 1, 2014-2019). He receives career support from the Dalhousie Medical Research Foundation as the Kathryn Allen Weldon Professor of Alzheimer Research and research support through grants from the Canadian Institutes of Health Research, the Canadian Frailty Network, the Nova Scotia Health Research Foundation, the Nova Scotia Health Authority Research Fund, and the Fountain Family Innovation Fund of the QEII Health Science Centre Foundation. RAB and MSA are employees of Otsuka Pharmaceutical Development and Commercialization Inc. MM is an employee of Otsuka Canada Pharmaceutical Inc. CATC is Chief Executive Officer of DGI Clinical. At the time of the study, HW, SEH, TD, and JS were employees of DGI Clinical Inc. LM received a postdoctoral fellowship from the Mitacs Elevate program, and her industrial cosponsor as part of this program is DGI Clinical Inc. Dementia Guide is a registered trademark owned by DementiaGuide Inc which operates as DGI Clinical.
Publisher Copyright:
©Kenneth Rockwood, Myrlene Sanon Aigbogun, Justin Stanley, Helen Wong, Taylor Dunn, Chère A T Chapman, Susan E Howlett, Maia Miguelez, Lisa McGarrigle, Ross A Baker.
ASJC Scopus Subject Areas
- Health Informatics
PubMed: MeSH publication types
- Journal Article
- Research Support, Non-U.S. Gov't