Why Patient Portal Proxy Accounts Are Key for Dementia Patients 

It could be useful for providers treating patients with dementia to encourage their care partners to create their own patient portal proxy accounts, according to a JAMA Internal Medicine research note showing that patient portal use was effective for dementia care management. 

As it stands, not many care partners—either paid or family caregivers—have a proxy patient portal account, which is an account that is tethered to the patient’s but is unique to the care partner. Proxy accounts give patients the option to block some health data from being visible from their care proxies but still let proxies engage in some of their loved one’s healthcare and, in some cases, speak on their behalf. 

Proxy patient portal accounts also tend to be more secure because they prevent patients from having to share their patient portal passwords, some experts have said. Overall, proxy accounts can facilitate family or caregiver engagement, which has proven benefits to clinical outcomes. 

This latest study looked particularly at patterns of patient portal use among patients with dementia, who may have an increased need for patient portal utilization. 

“Persons with dementia have especially complex health needs and less ability to perform electronic health management tasks than those without dementia,” wrote the researchers, who hailed from the Johns Hopkins School of Nursing and Johns Hopkins Bloomberg School of Public Health. “Persons with dementia and their care partners have a range of information needs that could be addressed through the patient portal,2 but little is known about patient portal practices in this population.” 

The researchers assessed patient portal utilization patterns for nearly 50,000 patients over age 65 who’d had more than two healthcare encounters within two years across a five-year study period. 

A dementia diagnosis was not common in the study population, with only 6.4 percent having a diagnosis documented in the EHR. Across all patients, those with dementia were just as likely to have a patient portal account as their peers without a diagnosis, with around 70 percent of patients in either category reporting as much. 

But when looking at how the patients used the portal, there were some differences, the researchers said. 

For one thing, folks with a dementia diagnosis were around three times more likely to have a care partner with their own registered proxy account. Overall, proxy accounts were uncommon, with 10 percent of those with dementia and 3.3 percent of those without a diagnosis having a care partner with a proxy account. 

And although people with dementia were less likely than their peers to have patient portal activity and send a message from their own account, their care proxies were more engaged with the technology. People with a dementia diagnosis were more likely to have their care partners send a message via a proxy account than those without a diagnosis. 

The study is limited, the researchers acknowledged, primarily because it relied on EHR documentation of a dementia diagnosis. Dementia is underdiagnosed, the team explained, so there may be more patients with dementia but without a diagnosis and who have care partners with a proxy patient portal account. 

Still, the study does indicate that there are key benefits of patients with dementia having a patient portal and their care partners creating proxy accounts. 

“We found that older adults with dementia and their care partners relied on the information and functionality afforded by the patient portal,” the researchers concluded. “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.” 

Separate data has indicated that proxy patient portal access is limited. A January 2023 JAMA Network Open study found that while care partners are certainly using the patient portal, they are doing so via the patient’s personal account. This indicates that patients are sharing their passwords, which could have consequences for patient privacy and security. 

The researchers said healthcare organizations should consider marketing any proxy patient portal account capabilities they have and ensure patients are able to extend proxy access to more than one care partner.