Jennifer L Wolff

Johns Hopkins University | JHU · Department of Health Policy

Background Little is known about the prevalence and nature of role‐sharing among family care partners and paid caregivers. Method We studied 440 participants in the 2015 National Health and Aging Trends Study (NHATS) receiving paid help with self‐care, mobility, or medical care. Guided by Litwak’s task specificity model, we focus on frequency of r...

Background Archetypes are representations of a group of people with shared behaviors, attitudes, and characteristics. The design and use of archetypes have potential application to increase partnership and support when embedding and scaling interventions but methodological approaches have not been developed. Objective To describe the methodology o...

Background How clinicians discuss, document, and diagnose health concerns within a visit shapes patient perceptions of their health conditions. Undiagnosed hearing loss among older adults with dementia or cognitive concerns may exacerbate neuropsychiatric symptoms and care challenges. This study investigates clinician documentation of hearing conce...

Persons living with dementia (PLWD) are at increased risk of potentially preventable acute care visits (hospitalizations and emergency department visits), but modifiable contributors are poorly understood. We aimed to identify potentially modifiable factors from patient secure portal messages and outpatient clinical notes in the 30 days leading up...

Little is known about whether paid caregivers “role-share” with family caregivers in home care, which reflects situations in which members from both groups assist with the same tasks. Home care is often Medicaid-financed, and many care recipients live with dementia. We conducted a cross-sectional analysis of the 2015 National Health and Aging Trend...

How clinicians document and discuss health concerns within a visit shapes patient health perception. This study investigates clinician documentation of hearing concerns and whether this varies for older adults with dementia/cognitive concerns. We use patient-level health and demographic information from the electronic medical record and associated...

People living with dementia (PLWD) often use potentially inappropriate medications (PIM), in which the risks of medication use outweigh the benefits. Little is known about how PLWD and their care partners use patient portals in general, and specifically to communicate with healthcare providers about medications. Our objective was to characterize th...

Importance The number of older adults in long-term correctional facilities (prisons) has increased rapidly in recent years. The cognitive and functional status of this population is not well understood due to limitations in the availability of longitudinal data. Objective To comparatively examine the prevalence and disability status of the populat...

INTRODUCTION Recommendations for advance care planning (ACP) in persons with cognitive impairment are based on expert input without insight from actual ACP conversations. METHODS We used thematic analysis to analyze transcripts of ACP conversations for 88 older adults with normal cognition (n = 15), mild cognitive impairment (n = 13), and scores c...

Background and Objectives We describe “role-sharing” in home care, defined as family care partners and paid caregivers assisting with the same task(s). Research Design and Methods We studied 440 participants in the 2015 National Health and Aging Trends Study (NHATS) receiving paid help with self-care, mobility, or medical care. We describe pattern...

Importance Primary care is a key setting for advance care planning (ACP). Objective To test the effects of a multicomponent primary care–based ACP intervention (SHARING Choices) on documented end-of-life preferences and potentially burdensome care at end of life. Design, Setting, and Participants This pragmatic cluster randomized clinical trial i...

Background People with cognitive impairment commonly use central nervous system‐active potentially inappropriate medications (CNS‐PIM), increasing risk of adverse outcomes. Patient portals may be a promising tool for facilitating medication‐related conversations. Little is known about portal use by this population related to medications. Objective...

Introduction: Family caregivers serve vital functions in older adults’ health care, but their own needs are not systematically assessed in routine care delivery. The present study employed a user-centered approach to develop and evaluate a pragmatic checklist to support proactive identification and discussion of caregivers’ concerns in primary care...

This cohort study assesses changes in emergency department (ED) use among Medicare beneficiaries aged 65 years and older before and after receiving a diagnosis of dementia.

BACKGROUND AND OBJECTIVES The evolution of care networks accompanying older adults’ changing care needs–and implications for unmet care needs–are not well described. RESEARCH DESIGN AND METHODS Using group-based trajectory models, we identify 4 incident care need patterns (“care need trajectory groups”) for 1,038 older adults in the 2012-2018 Nati...

Patients, families, and clinicians increasingly communicate through patient portals. Due to potential for multiple authors, clinicians need to know who is communicating with them. OurNotes is a portal-based pre-visit agenda setting questionnaire. This study adapted OurNotes to include a self-identification question to help clinicians interpret info...

People with dementia (PWD) often use potentially inappropriate medications (PIM), exposing them to harm. Patient portals are a promising platform for delivering deprescribing educational interventions to reduce PIM use, yet little is known about how PWD and their care partners use patient portals to communicate with clinicians about medications. To...

BACKGROUND In the United States, the landscape of unpaid care delivery is both challenging and complex, and millions of individuals undertaking the vital role of helping family (broadly defined) manage their health care and well-being. These family care partners provide critical and often daily support for tasks such as dressing and bathing, as wel...

Background and Objectives: Traditional methods of fidelity monitoring are not possible in pragmatic trials in real-world clinical settings. We describe our approach to monitoring and reinforcing the fidelity to ACP conversations for a hard-to-reach subpopulation by using standardized patients in a pragmatic trial. Research Design and Methods: We de...

Background Primary care can be an important setting for communication and advance care planning (ACP), including for those with dementia and their families. The study objective was to explore experiences with a pragmatic trial of a communication and ACP intervention, SHARING Choices, in primary care for older adults with and without dementia. Meth...

INTRODUCTION Best practices for conducting advance care planning (ACP) among persons with cognitive impairment exist, but evidence‐based models are lacking for the primary care setting. METHODS We tested a remote multicomponent ACP model (SHARE) versus minimally enhanced usual care in 273 person–family dyads from eight primary care practices. RES...

Background Hearing loss is prevalent and consequential but under‐diagnosed and managed. The Medicare Annual Wellness Visit (AWV) health risk assessment elicits patient‐reported hearing concerns but whether such information affects documentation, diagnosis, or referral is unknown. Methods We use 5 years of electronic medical record (EMR) data (2017...

Background: Millions of Americans manage their healthcare with the help of a trusted individual. Shared access to a patient's online patient portal is one tool that can assist their care partner(s) in gaining access to the patient's health information and allow for easy information exchange with the patient's care team. Shared access provides care...

The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate between patients a...

Care partners are crucial to supporting the complex health needs of older adults with dementia, but they are not systematically identified in care delivery. As part of a real-world implementation project in geriatric primary care, we adapted a portal-based agenda setting intervention, OurNotes, by incorporating items to help care partners self-iden...

BACKGROUND Family and unpaid caregivers play a crucial role in supporting people living with dementia (PLWD), yet they are not systematically identified and documented by health systems. OBJECTIVE To determine the extent to which caregivers are currently identified and documented in the electronic health record (EHR), and to elicit the perspective...

Background Family and unpaid caregivers play a crucial role in supporting people living with dementia; yet, they are not systematically identified and documented by health systems. Objective The aims of the study are to determine the extent to which caregivers are currently identified and documented in the electronic health record (EHR) and to eli...

Background: Archetypes are representations of a group of people with shared behaviors, attitudes, and characteristics. The design and use of archetypes have potential application to increase partnership and support when embedding and scaling interventions but methodological approaches have not been developed. Objective: To describe the methodology...

Background People living with dementia (PLWD) have complex medication regimens, exposing them to increased risk of harm. Pragmatic deprescribing strategies that align with patient‐care partner goals are needed. Methods A pilot study of a pharmacist‐led intervention to optimize medications with patient‐care partner priorities, ran May 2021–2022 at...

BACKGROUND Subjective cognitive impairment (SCI) measures in population‐based surveys offer potential for dementia surveillance, yet their validation against established dementia measures is lacking. METHODS We assessed agreement between SCI and a validated probable dementia algorithm in a random one‐third sample (n = 1936) of participants in the...

Background and Objectives Patient portals are secure online platforms that allow patients to perform electronic health management tasks and engage in bidirectional information exchange with their care team. Some health systems administer Medicare Annual Wellness Visit (AWV) health risk assessments through the patient portal. Scalable opportunities...

Background Patient portal secure messaging can support age‐friendly dementia care, yet little is known about care partner use of the portal and how message concerns relate to age‐friendly issues. Methods We conducted a two‐part observational study. We first assessed the feasibility of automating care partner identification from patient portal mess...

Introduction Consumer‐oriented health information technologies (CHIT) such as the patient portal have a growing role in care delivery redesign initiatives such as the Learning Health System. Care partners commonly navigate CHIT demands alongside persons with complex health and social needs, but their role is not well specified. Methods We assemble...

Care partners are critical in supporting the complex health needs of older adults with dementia; the importance of their role increases with disease progression. Despite their extensive involvement in dementia care, care partners are not systematically identified or supported in healthcare settings. Consumer health information technology (CHIT) aff...

Direct care workers provide assistance with daily activities to persons with disabilities. Direct care workers are well positioned to recognize and share information about care gaps and changes in function and behaviors but are often viewed as unskilled and excluded from interdisciplinary care team interactions. We conducted 11 semi-structured inte...

Advance care planning (ACP) is defined as a key task in ambulatory care for patients to share values, goals, and preferences for future medical care. Ideally ACP is revisited throughout the course of serious illness and engages family in discussions with clinicians. Most interventions, however, have not targeted primary care as a setting for ACP bu...

A cluster randomization approach was applied to 55 primary care practices across two health systems. A 1:2 randomization design resulted in 19 practices being randomized to the SHARING Choices intervention condition and 36 practices randomized to a usual care control condition. The primary outcome variables include documentation of an advance direc...

The home environment is an increasingly important setting for long-term services and support. However, more information is needed about the relationship between the home environment and adverse consequences due to unmet needs (i.e., going without assistance with everyday activities such as eating or bathing) among older adults. We draw on informati...

To advance care for persons with Alzheimer’s disease and related dementias (ADRD), real-world health system effectiveness research must actively engage those affected to understand what works, for whom, in what setting, and for how long – an agenda central to Learning Health System principles. The spread of consumer health information technology af...

There is growing recognition of the importance of and challenges to maintaining fidelity in pragmatic randomized clinical trials. Simulations using standardized patients are a high-fidelity, low-stake, non-threatening opportunity to evaluate knowledge, skills, and competencies associated with high-quality healthcare delivery. We created standardize...

Family care partners often assist persons with dementia in managing their health care, including through healthcare system patient portals. Thus, gaps in communication with family care partners can lead to unmet care needs. OurNotes is an agenda setting intervention included within pre-visit questionnaires that is sent through the patient portal. T...

Medicaid-funded long-term services and supports (LTSS) are foundational in helping older dual-enrollees with disabilities remain in the community. Over the past decade, nearly half of U.S. states have transformed LTSS delivery through managed LTSS (MLTSS) with the goal of improving care coordination and avoiding unnecessary health care utilization....

Primary care is an important setting for patient and family-centered communication with older adults given the high frequency of interactions, longitudinal trusted relationships, and patient preferences for advance care planning (ACP). Increasing ACP conversations and documentation of advance directives in primary care is a focus of quality-of-care...

Long-term services and supports (LTSS) in the United States are defined by its patchwork and unequal nature. Data constraints obscure our understanding of inequities in LTSS care experiences and factors that may attenuate them. We advance a conceptual framework of LTSS-relevant environmental domains. We then link measures from public use datasets t...

This presentation will introduce SHARE, a randomized-controlled trial to proactively engage family caregivers and normalize advance care planning in primary care. The objective of the study is to engage family caregivers in longitudinal interactions with primary care clinicians and stimulate and support ACP discussions in primary care. We focus on...

Patient portals are secure online platforms that provide an opportunity for patients to actively participate in their care by viewing their health information, messaging with clinicians, and completing health risk assessments, like the Medicare Annual Wellness visit (AWV). Using electronic medical record and patient portal (MyChart) data (October 3...

Primary care providers (PCPs) play an integral role in diagnosis and early management of dementia. Secure messaging through the patient portal is increasingly being used by patients to communicate with PCPs. Little is known about the nature of concerns raised by patients with dementia and their care partners when messaging PCPs following dementia d...

Alzheimer’s Disease and Related Dementias (ADRD) are among the most profoundly disabling and costly of all health conditions, and persons living with dementia are at heightened risk for high utilization of burdensome and costly end-of-life care. Family caregivers are at the forefront of managing ADRD, however, they are not routinely engaged in prim...

Background The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends—“care partners”—to share access to patient portal accounts, thus enabli...

Patients, family members, and clinicians express concerns about potential adverse drug withdrawal events (ADWEs) following medication discontinuation or fears of upsetting a stable medical equilibrium as key barriers to deprescribing. Currently, there are limited methods to pragmatically assess the safety of deprescribing and ascertain ADWEs. We re...

Purpose The current standard for management of hearing loss in the United States involves the use of a hearing aid. Anecdotal evidence suggests that the use of a hearing aid may be less effective in the context of dementia, though national data on use and cessation are not described. Method This longitudinal analysis of the National Health and Agi...

Objectives: We sought to understand the objectives, targeted populations, therapeutic elements, and delivery characteristics of patient portal interventions. Materials and methods: Following Arksey and O-Malley's methodological framework, we conducted a scoping review of manuscripts published through June 2022 by hand and systematically searchin...

Background: Care management programs are widely used to improve care coordination and management of chronic conditions for high-need older adults. With many care management programs targeting a small number of people, high-need older adults may receive services from more than one care management program (co-occurring care management), the implicat...

UNSTRUCTURED The US health care delivery system does not systematically engage or support family or friend care partners. Meanwhile, the uptake and familiarity of portals to personal health information are increasing among patients. Technology innovations, such as shared access to the portal, use separate identity credentials to differentiate betwe...

Unlabelled: Policy Points Little attention to date has been directed at examining how the long-term services and supports (LTSS) environmental context affects the health and well-being of older adults with disabilities. We develop a conceptual framework identifying environmental domains that contribute to LTSS use, care quality, and care experienc...

This cohort study assesses the level of engagement with an electronic health management system among patients with recently diagnosed dementia and their caregivers.

Introduction: Care partners are at the forefront of dementia care, yet little is known about patient portal use in the context of dementia diagnosis. Methods: We conducted an observational cohort study of date/time-stamped patient portal use for a 5-year period (October 3, 2017-October 2, 2022) at an academic health system. The cohort consisted...

Background: Few advance care planning (ACP) interventions have been scaled in primary care. Problem: Best practices for delivering ACP at scale in primary care do not exist and prior efforts have excluded older adults with Alzheimer's Disease and Related Dementias (ADRD). Intervention: SHARING Choices (NCT#04819191) is a multicomponent cluster...

Objective: Little is known about effective strategies to improve advance care planning (ACP) for persons with cognitive impairment in primary care, the most common setting of care. We describe a randomized controlled trial to test the efficacy of a multicomponent communication intervention, "Sharing Healthcare Wishes in Primary Care" (SHARE). Par...

Repeated claims that a dwindling supply of potential caregivers is creating a crisis in care for the U.S. aging population have not been well-grounded in empirical research. Concerns about the supply of family care do not adequately recognize factors that may modify the availability and willingness of family and friends to provide care to older per...

This is a period of striking and unprecedented population aging that involves more individuals not merely attaining old age but reaching very old ages at which they are at heightened risk for chronic age-related conditions such as sensory loss, frailty, functional disability, and cognitive decline (Ortman et al., 2014). The delivery of person- and...

Objective: This study examines work and care patterns and their association with experienced well-being over the course of the day and tests a moderating effect of gender. Background: Many family and unpaid caregivers to older adults face dual responsibilities of work and caregiving. Yet little is known about how working caregivers sequence resp...

BACKGROUND The patient portal is a widely available secure digital platform offered by care delivery organizations that enables patients to communicate electronically with clinicians and manage their care. Many organizations allow patients to authorize family members or friends—“care partners”—to share access to patient portal accounts, thus enabli...

To advance care for persons with Alzheimer's disease and related dementias (ADRD), real-world health system effectiveness research must actively engage those affected to understand what works, for whom, in what setting, and for how long-an agenda central to learning health system (LHS) principles. This perspective discusses how emerging payment mod...

Introduction: Persons living with, versus without, dementia (PLWD) have heightened fall-risk. Little is known about whether fall-risk factors differ by dementia status. Methods: Using the 2015 and 2016 National Health and Aging Trends Study, we prospectively identified fall-risk factors over a 12-month period among community-living older adults...

The patient portal (hereafter, “portal”) is an online platform allowing patients to view health information, perform health management tasks, and directly message clinicians. Millions of older adults co-manage their health care with family caregivers, yet little is known about the extent to which caregivers use the portal alongside or on behalf of...

Background: Millions of older adults co-manage or delegate health responsibilities to one or more family caregivers. Patient portals facilitate health care management tasks, but little is known about portal use arrangements (i.e., individual or joint use) among older adults and their caregivers. Methods: We sought to characterize individual and...

Background: Dementia and hearing loss (HL) are conditions, which restrict communication ability and amplify the difficulty of implementing effective care coordination and communication with medical providers. We examined how the presence of HL and dementia influence communication with medical providers, and the role of involved care partners durin...

Introduction Implementing patient- and family-centered communication strategies has proven challenging in primary care, particularly for persons with dementia. To address this, we designed SHARING Choices, a multicomponent intervention combining patient and family partnered agenda setting, electronic portal access, and supports for advance care pla...

In Maryland, residential service agencies deliver Medicaid Home and Community-Based Services (HCBS) to older adults with disabilities through direct care workers (e.g., personal care aides). Leveraging survey data from residential service agency administrators, linked to interRAI Home Care assessments for 1144 participants, we describe agency chara...

Background: The quality of communication (QOC) questionnaire has been widely used to assess foundational aspects of patient-clinician communication about end-of-life (EOL) care. However, this instrument has never before been fielded with primary care patients who have cognitive impairment and their caregivers, a population with unique communicatio...

Objectives Although nearly half of all family and unpaid caregivers to older adults work, little is known about short-term work impacts of caregiving using measures encompassing both missed work time and reduced productivity while physically at work. We quantify the prevalence, costs, and correlates of caregiving-related work productivity loss. Me...

The economic impacts of caring for an older adult may be amplified for employed family and unpaid caregivers. We examine out-of-pocket spending among employed, retired, and unemployed caregivers. Among employed caregivers, we identify correlates of spending and assess whether spending and work productivity loss contribute to financial burden. Analy...

Background: Advance care planning (ACP) and involving family are particularly important in dementia, and primary care is a key setting. The purpose of this trial is to examine the impact and implementation of SHARING Choices, an intervention to improve communication for older adults with and without dementia through proactively supporting ACP and...

Objectives Community-living older Medicare and Medicaid enrollees (“dual-enrollees”) have high care needs and commonly receive paid and unpaid long-term services and supports (LTSS) to help with routine activities. Little is known about whether receiving paid help or individuals’ state and neighborhood environmental context (“LTSS environment”) rel...

Background For caregivers of people with heart failure, addressing a range of care recipient needs at home can potentially be burdensome, but caregivers may also gain meaning from caregiving. The Caregiver Support Program, a multicomponent strengths-based intervention, is designed to improve outcomes of heart failure caregivers. Objectives 1) Test...

Background: Care at the end of life is commonly fragmented; however, little is known about commonly used measures of fragmentation of care in the last year of life (LYOL). We sought to understand differences in fragmentation of care by dementia status among seriously ill older adults in the LYOL. Methods: We analyzed data from adults ≥65 years i...

More than 6 million adults in the United States are affected by Alzheimer’s disease and related dementias (ADRD), the majority of whom rely on assistance from an unpaid care partner (family, friends; Alzheimer’s Association, 2022). ADRD care partners assist with disease management tasks (Riffin et al., 2017) and perform critical functions within th...

Background: Individuals with dementia or mild cognitive impairment frequently have multiple chronic conditions (defined as ≥2 chronic medical conditions) and take multiple medications, increasing their risk for adverse outcomes. Deprescribing (reducing or stopping medications for which potential harms outweigh potential benefits) may decrease thei...