JMIR Publications

ABSTRACT

Background:

In people with dementia, neuropsychiatric symptoms (NPS), especially agitation, are associated with worse quality of life and caregiver burden. Since NPS may vary with illness severity, knowledge of how people with dementia and their caregivers describe and rate the importance of agitation symptoms can improve 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 online platforms as a means of managing symptoms.

Objective:

The aim of this study was to examine online 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 website www.dementiaguide.com hosts an online 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 validated 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 provisional consensus definition. We compared the proportion of people with NPS 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, 4,121 people had used the tracking tool, of whom 2,577 provided sufficient data to allow disease severity staging. NPS were tracked by 2,127 (83%) and agitation by 1,898 (74%). The proportion in whom agitation was tracked increased with increasing cognitive impairment: 68% in people with MCI, and 73%, 79% and 90% in mild, moderate, and severe dementia respectively (χ2(3)=54.89, p<0.001). The number of NPS and agitation descriptors selected also increased with severity (median number of NPS = 1, 2, 2 and 3 for MCI, mild, moderate and severe dementia, H(3)=250.47, p<0.001; median number of agitation descriptors = 1, 2, 3 and 4, H(3)=146.11, p<0.001).

Conclusions:

NPS 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.