Older Adults with Dementia Relying on Care Partners Show More Engagement with Patient Portal

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New research into the information needs of adults over 65 and their patient portal interactions points to the value of consumer-oriented health information technologies.

Older adults, regardless of diagnosed dementia, have comparable rates of registration for patient portals, according to new findings, but those with dementia are 3 times more likely to have a registered care partner who actively engaged in messaging.1

These findings were the result a new study conducted after prior research explored the information needs of older adults with dementia and their care partners and the manner in which these needs can be addressed through a patient portal.2

Given that there is much unknown about patient portal practices in this particular population, new research was conducted. The study was authored by Kelly T. Gleason, PhD, RN, from Johns Hopkins University’s School of Nursing in Baltimore.

“Persons with dementia and their care partners have a range of information needs that could be addressed through the patient portal, but little is known about patient portal practices in this population,” Gleason and colleagues wrote. “We conducted a cohort study of older adults’ patient portal interactions at a large academic health system by receipt and timing of dementia diagnosis.”

Background and Findings

The investigators conducted a retrospective study involving individuals aged 65 years or older who had a minimum of 2 evaluation and management visits within any 24-month period over a span of 5 total years, from October of 2017, to October of 2022.

The research team’s study received approval from the Institutional Review Board of Johns Hopkins School of Medicine, and informed consent was reported to be waived as they utilized secondary data.

The team assessed patient portal activity based on interactions logged with date and time stamps, encompassing login and session information. They categorized portal users and their associated accounts as registered accounts with 1 or more logins.

In order to quantify portal activity, the investigators came up with a metric referred to as the ‘portal activity metric,’ which represented the ratio of the number of total sessions with the portal to the number of clinical encounters. The research team examined the portal activity metric for all of the users of the portal and their proxies (utilizing shared-access credentials) based on their diagnosis of dementia.

Afterward, the investigators compared several different measures of portal activity among the older adults with recent diagnoses of dementia on a monthly basis, both for the 12 months preceding the diagnosis and the 12 months immediately following it.

To assess statistical significance before and after diagnosis, the investigators employed a paired t-test with a two-sided significance level of P = .05.

The research team’s study consisted of 49,382 participants, with an average age of 76.56 years and a nearly equal distribution of women (57.3%) and men (42.6%). Among the included participants, only 6.4% had a reported diagnosis of dementia.

In the conclusion of the study, those with a dementia diagnosis were found to be just as likely to be registered for the patient portal as those without a diagnosis (71.2% compared to 71.5%, respectively; P = .69), but they were also reported to be more likely to maintain a registered care partner with shared access to their portal account (10.4% compared to 3.3%; P < .001).

Comparing those with and without reported dementia, the investigators found that those with a diagnosis were shown to exhibit lower levels of portal activity metric (3.88 compared to 5.35; P < .001), but their likelihood of being a portal user (65.5% compared to 65.8%; P = .66) and the number of messages sent from their account (28.77 compared to 29.14; P = .77) were shown to be similar.

Interestingly, more portal messages were found by the research team to have come from registered care partners of patients with a dementia diagnosis as opposed to those without a diagnosis (19.50 compared to 13.85; P = .03).

The investigators also noted that the portal activity metric substantially rose in the 12 months after a dementia diagnosis compared to the time prior to one’s diagnosis (3.34 compared to 2.02). Additionally, the monthly number of messages sent as well as the total number of portal sessions were shown to be higher in the year after the diagnosis versus the year before.

“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,” they wrote.

The investigators added that these results demonstrate the importance of improved support to all patients using health information technologies, including patients with either reliance upon or a desire for care partners.


  1. Gleason KT, Wu MMJ, Wec A, Powell DS, Zhang T, Wolff JL. Patient Portal Use Among Older Adults With Dementia Diagnosis. JAMA Intern Med. Published online June 26, 2023. doi:10.1001/jamainternmed.2023.1568.
  2. Taha J, Czaja SJ, Sharit J, Morrow DG. Factors affecting usage of a personal health record (PHR) to manage health. Psychol Aging. 2013;28(4):1124-1139. doi:10.1037/a0033911.