Study: People with dementia rely on patient portals for care

Key takeaways:

• Patient portals can be a positive resource for those diagnosed with dementia.
• The care partners of patients with dementia were more likely to actively message in the portal than those without a diagnosis.

People with dementia were three times more likely to have a registered care partner actively engaging with a patient portal than those without dementia, according to research published in JAMA Internal Medicine.

People who have dementia have complex health needs and a lesser ability to perform electronic health management tasks than those who do not have dementia, Kelly T. Gleason, PhD, RN, an assistant professor at the Johns Hopkins School of Nursing, and colleagues wrote. The patient portal plays an increasingly important role in health system navigation and may help address a range of needs among people with dementia and their care partners. However, not much is yet known about patient portal access in this population.

Gleason and colleagues conducted a study to evaluate the patient portal interactions among older adults at a large academic health system.

For the cohort study, the researchers enrolled 49,382 patients aged 65 years or older with at least two evaluation and management visits during any 2 years from October 2017 to October 2022. They measured patient portal activity from time- or date-stamped interactions containing session and login information and created a portal activity metric that measured the ratio of portal sessions to clinical encounters.

After examining the portal activity metric, they compared several measures of portal activity from older adults who had been recently diagnosed with dementia every month for the year before and after diagnosis.

Gleason and colleagues found that those diagnosed with dementia and those without were similarly likely to be registered for the patient portal (71.2% vs. 71.5%) and sent a similar number of messages (28.77 vs. 29.14), but those with dementia had lower portal activity metric scores (3.88 vs. 5.35; P < .001).

However, those with a diagnosis were more likely to have a registered care partner with shared access to the portal (10.4% vs. 3.3%; P < .001) and there were more portal messages from registered care partners of patients with vs. without a diagnosis (19.5 vs. 13.85; P = .03).

The researchers also noted a significant uptick in portal use in the year after dementia diagnosis, with a higher monthly number of sessions (6.54 vs. 4.17; P < .001) and number of messages sent (4.31 vs. 3.32; P < .001).

Gleason and colleagues concluded that “older adults with dementia and their care partners relied on the information and functionality afforded by the patient portal.”

“These results, in conjunction with gaps in dementia care quality and the importance of care partner engagement and support, have implications for modalities of systems-level dementia care initiatives that leverage the patient portal, including efforts to remedy the low uptake of shared-access or proxy portal registration,” Gleason and colleagues wrote. “Additionally, the results highlight the need to better support all patients, including those who desire or rely on care partners, through consumer-oriented health information technologies.”