Table 3.

Patient Portal Innovations to Support Persons with ADRD and Their Care Partners

Element	Description	Strategies (examples)
Detection of possible ADRD	Identify suspected cognitive impairment when there is a decline from previous function in daily activities, occupational ability, or social engagement; facilitate referrals for evaluation	Electronic completion of annual wellness visits via pre-screening surveys are delivered through the patient portal to identify subjective memory concerns or change in function.1
Continuous monitoring & assessment	Monitor and assess cognitive, functional, behavioral, and psychological needs as well as safety and care partner stress	Care partner-responses to structured assessments2 are fielded to identify and proactively address emerging health issues. Care partners may inquire about cognitive changes and dementia progression.
Ongoing care planning	Develop and implement a care plan that is evaluated and modified as needed, including wishes about future and end-of-life care	Care partner-reported assessments2 and advance care planning documents (e.g, advance directives) completed outside the health care setting can be submitted through the patient portal.3
Psychosocial interventions	Deliver interventions to prevent or reduce impacts of cognitive, functional, behavioral, and psychological symptoms and care partner stress	Educational materials and resources (e.g., vetted videos, websites, reading materials, referrals to community supports) to attenuate the demands of ADRD are disseminated through the patient portal. 4,5
Self -management	Provide self-management tools to enhance skills of persons living with ADRD and care partners in managing ADRD, care navigation, and supporting person-centered goals.	Patients and care partners receive insufficient guidance about ADRD management.6 The patient portal affords opportunities for disseminating education and resources in response to seminal events (e.g., hospitalization, new diagnosis), or specific health management issues (e.g., polypharmacy).
Care partner support	Identify one or more care partners to include in evaluation, decision-making, and care planning; and provide support and assistance to help them.	Care partners may be registered with their own credentials for the patient portal through “proxy”/”shared,” 7,8 setting the stage for needs assessments to identify areas for tailored education and resources.
Medication management	Use evidence-based medication management including deprescribing medications with adverse cognitive effects and increasing medication adherence.	Care partners may interact with pharmacists and clinicians through secure messaging to clarify dosing instructions, report concerns (e.g. potential adverse effects), obtain accurate medication lists, request pharmacy referrals and refills, and electronic education may be disseminated.9,10
Communication with clinicians	Facilitate timely information sharing between care partners and clinicians between medical visits.	Care partners may privately share concerns regarding potentially sensitive topics (e.g., driving or behaviors) in advance of a medical visit.
Treat related conditions	Take steps to prevent and treat conditions related to ADRD, such as depression, falls, and delirium.	Secure messaging allows for medication titration and proactive and efficient management of emerging health concerns between visits.11
Coordination of care	Coordinate transitional and other healthcare services across hospitals, nursing homes, and ambulatory care and community-based settings, including long-term services and supports	Families are often the conduit of information between primary care and specialty clinicians and long-term services and supports providers. The patient portal facilitates asynchronous communication, transparent information exchange, and awareness of the nature and scope of treatments and care among the patient/care partner, primary care clinicians, and specialty clinicians.12

Adapted from Lees Haggerty, K., et al. (2020). "Recommendations to Improve Payment Policies for Comprehensive Dementia Care." J Am Geriatr Soc 68(11): 2478-2485 and Wiener, J. M., et al. (2016). Examining Models of Dementia Care: Final Report. Assistant Secretary of Planning and Evaluation, Division of Disability Aging and Long Term Care. Washington DC, U.S. Department of Health and Human Services.

Notes:

^1.Sorondo, B., et al. (2016). "Using a Patient Portal to Transmit Patient Reported Health Information into the Electronic Record: Workflow Implications and User Experience." EGEMS (Wash DC) 4(3): 1237.

^2.Ayton, D. R., et al. (2021). "Patient-Reported Outcome Measures to Inform Care of People With Dementia-A Systematic Scoping Review." Gerontologist 61(5): e185-e194.

^3.Lum, H. D., et al. (2019). "Design and Implementation of Patient Portal-Based Advance Care Planning Tools." J Pain Symptom Manage 57(1): 112-117 e112.

^4.Kales, H. C., et al. (2018). "Effect of the WeCareAdvisor on family caregiver outcomes in dementia: a pilot randomized controlled trial." BMC Geriatr 18(1): 113.

^5.Moehead, A., et al. (2020). "A Web-Based Dementia Education Program and its Application to an Australian Web-Based Dementia Care Competency and Training Network: Integrative Systematic Review." J Med Internet Res 22(1): e16808.

^6.Shafir, A., et al. (2022). ""Captive by the Uncertainty"-Experiences with Anticipatory Guidance for People Living with Dementia and Their Caregivers at a Specialty Dementia Clinic." J Alzheimers Dis 86(2): 787-800.

^7.Wolff, J. L., et al. (2022). "Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity." JMIR Aging 5(2).

^8.Wolff, J. L., et al. (2019). "Sharing in Care: Engaging care partners in the care and communication of breast cancer patients." Breast Cancer Research and Treatment 177(1): 127-136.

^9.Bayliss, E. A., et al. (2022). "Deprescribing Education vs Usual Care for Patients With Cognitive Impairment and Primary Care Clinicians: The OPTIMIZE Pragmatic Cluster Randomized Trial." JAMA Intern Med 182(5): 534-542.

^10.Osborn, C. Y., et al. (2013). "Understanding patient portal use: implications for medication management." J Med Internet Res 15(7): e133.

^11.Shimada, S. L., et al. (2017). "An analysis of patient-provider secure messaging at two Veterans Health Administration medical centers: message content and resolution through secure messaging." J Am Med Inform Assoc 24(5): 942-949.

^12.Otte-Trojel, T., et al. (2014). "How outcomes are achieved through patient portals: a realist review." J Am Med Inform Assoc 21(4): 751-757