Few Caregivers of Older Adults With Dementia Have Shared Access to Their Care Recipients’ Electronic Health Record Portal

Electronic Health Record (EHR)-linked patient portals enable patients to view discharge instructions, lab results, and medication lists as well as schedule appointments [1]. Many patient portals also allow for shared (“proxy”) access, which is when a trusted non-patient (“care partner”) is formally registered to access a patient’s portal account using their own credentials (login/password). A patient can revoke shared portal access at any time and this is not an acknowledgement of power of attorney or lack of capacity. Shared portal access has several advantages, including: (1) duplicate appointment and health record alerts are sent to the care partner’s phone and/or email, (2) the care partner can send messages/questions to the patient’s providers, (3) alternate contact information is available when a patient does not answer secure messages or calls, and (4) care partners can be granted shared access for multiple friends and/or family members, reducing the need to memorize multiple logins and passwords [2, 3]. In pediatrics, this last point is especially helpful for families with multiple children, but it can be equally helpful for care partners with multiple older relatives.

Older adults who have dementia or cognitive impairment could particularly benefit by granting care partners shared portal access. A recent single site study from Johns Hopkins found that while 71% of patients with dementia had active portal accounts, only 10% had a care partner with shared access [4]. Additionally, 97% of messages sent from the patient’s account were authored by nonpatients, suggesting patients are sharing login credentials rather than formally registering a care partner to be provided with their own identity credential (login/password). Sharing credentials can expose patients to data breaches or cause confusion if healthcare staff do not know whom they are contacting [5].

We wanted to investigate these findings at our own institution. We hypothesized that shared portal access will be higher for patients with dementia or cognitive impairment. Our medical center is a large academic healthsystem in the Midwest which uses Epic EHR (Epic Systems Corporation, Verona, WI) and the MyChart patient portal. We analyzed de-identified clinical data via a data exploration tool within our EHR called Slicer/Dicer, which is exempt under Category 4 from need for IRB review. The EHR Slicer/Dicer tool was queried in December 2025 to identify proportions of patients with activated portals, grouped by age (< 18, 18–40, 41–59, 60–79, and 80+ years), with the outcome of granted shared access to their portal account. First, we examined shared portal access across all patients with current active portal accounts. Next, we looked at shared portal access for older adults in the prior 6 months (June–December 2025) with activated portal accounts and a SNOMED code for dementia (52448006) or cognitive impairment (386806002).

Among all patients with active portal accounts, 89% of children ages < 18 years had registered one or more care partners to access their portal account, but that rate dropped to < 1% of adult patients (Table 1). The rate of shared access does increase with age but remains low (2.1% in patients aged 80+ years). Among adult patients with a diagnosis of dementia or cognitive impairment, the proportion with shared portal access was slightly higher in all age groups, but remained low at < 3% (Figure 1).

TABLE 1 |.

In an academic healthcare institution, proxy access was common in children’s accounts (ages < 18 years), but very uncommon for older adults, even among those with impaired cognition or dementia. Data from 2025.

	Age group (years)	Total (n)	Proxy access (%, n)
All patients with an active EHR portal:	< 18	72,273	89.4%	64,620
	18–40	382,347	0.1%	361
	41–59	334,066	0.1%	267
	60–79	277,704	0.2%	478
	80+	43,918	0.8%	335
Patients with an active EHR portal and a diagnosis of impaired cognition or dementia within the past 6 months:	< 18	275	71.6%	197
	18–40	4523	1.2%	54
	41–59	6690	0.4%	25
	60–79	12,429	0.8%	97
	80+	5859	2.1%	122

FIGURE 1 |.

Shared access to EHR patient portals among adults with a diagnosis of dementia or cognitive impairment and a currently active patient portal, by age group (June–December 2025).

Shared portal access is therefore highly under-utilized by older adults in our health system, confirming prior studies [4, 6]. This is particularly concerning for patients with cognitive impairment as well as for patients with complex chronic health conditions who might benefit from additional help with care navigation. Prior work has found that in-person technological assistance to establish portal access increases patient portal use [7, 8]. A recent multicenter trial sought to increase shared portal access for older adults in ambulatory settings using low-cost, scalable strategies involving a public awareness campaign paired with service delivery line-specific clinician and staff education [9]. While portal registration doubled among new patients, the initiative did not increase care partner registration broadly. It is possible that the hospital context, in which patients have more time with healthcare providers and staff, could be more successful in increasing shared access [8]. Hospitalized patients and care partners may also be more motivated to set up shared portal access in the context of acute illness and the importance of ensuring rapid access to test results.

We conclude that the finding of low rates of shared access for older patients with cognitive impairment or dementia is likely common across institutions. Shared access should be considered in the design and implementation of future interventions to improve transitions of care and care navigation.