Articles
Find published articles about dementia care below.
Applying An Evidence-Based Approach To Comprehensive Dementia Care Under The New GUIDE Model
Kristin Lees Haggerty Gary Epstein-Lubow Rebecca Jackson Stoeckle
Jane Carmody
Abby Maglich
Madelyn Johnson Nora Super
Lynn Spragens
David R. Lee
Rani E. Snyder
Among the challenges of being diagnosed with dementia and caring for someone diagnosed with dementia is navigating the complicated health, legal, and social systems designed to help and protect people living with dementia. Recognizing the need for a holistic and coordinated approach to dementia care, comprehensive dementia care programs address both the needs of people living with dementia and their caregivers through several core elements including, for example, care planning, medication management, psychosocial intervention, and care coordination. These programs have been developed over decades of rigorous research including through randomized controlled trials. Despite the obvious need for these programs and mounting evidence of their effectiveness, they have not been widely adopted in the US, largely because there has not been an adequate payment mechanism to support implementation. Until now.
Caregiver outcomes of a dementia care program
Leslie Evertson
Lee Jennings
David Reuben
The University of California, Los Angeles Alzheimer’s and Dementia Care (ADC) program enrolls persons living with dementia (PLWD) and their family caregivers as dyads to work with nurse practitioner dementia care specialists to provide coordinated dementia care. At one year, despite disease progression, overall the PLWDs’ behavioral and depressive symptoms improved
Dementia care navigation: Building toward a common definition, key principles, and outcomes
David Bass
Sarah Dulaney
Leslie Evertson
Quincy Samus
As the complexity of medical treatments and patient care systems have increased, the concept of patient navigation is growing in both popularity and breadth of application. Patient navigators are trained personnel whose role is not to provide clinical care, but to partner with patients to help them identify their needs and goals and then overcome modifiable patient‐, provider‐, and systems‐level barriers. Due to its high incidence, duration, and medical–social complexity, dementia is an ideal candidate for a patient‐centric health care delivery model such as care navigation.
Dissemination of the Care Ecosystem Collaborative Care Model for Dementia
Sarah Dulaney
Michelle Barclay
Kate Possin
Dementia represents a growing healthcare challenge in the United States. The Care Ecosystem, an effective collaborative care model, bridges medical and social care needs for individuals with dementia. The purpose of this study was to describe how the Care Ecosystem has been disseminated and the lessons learned from this experience.
Findings From a Real-World Translation Study of the Evidence-Based “Partners in Dementia Care”
David Bass
Keith Kearny
Numerous non-pharmacological programs for family caregivers and persons with dementia (PWDs) have been found efficacious in randomized controlled trials. Few programs have been tested in translation studies that assess feasibility and outcomes in less-controlled, real-world implementations. This translation study tested the impact of the partnership version of BRI Care Consultation, “Partners in Dementia Care (PDC),” on outcomes for PWDs and their family/friend caregivers.
Long-term effects of collaborative dementia care on quality of life and caregiver well-being
Sarah Dulaney
Kate Possin
Collaborative dementia care models with care navigation, including the Care Ecosystem, improve outcomes for persons living with dementia (PLWDs) and their caregivers. The effects of continuous care over long periods have not been studied.
Patient and caregiver outcomes at the integrated memory care clinic
Carolyn Clevenger
The purpose of this longitudinal cohort study was to explore the outcomes of persons living with dementia (PLWD) and their caregivers during their first 9 months at the Integrated Memory Care Clinic (IMCC). IMCC advanced practice registered nurses provide dementia care and primary care simultaneously and continuously to PLWD until institutionalization.
Primary Care Pracitioner Perspectives on the Role of Primary Care in Dementia Diagnosis and Care
Kate Possin
This qualitative study evaluates primary care pracitioner perspectives on their role in dementia diagnosis and care.
Reasons for Hospitalization While Receiving Dementia Care Coordination Through Maximizing Independence at Home
Quincy Samus
Melissa Reuland
Halima Amjad
Objectives: Persons living with dementia (PLWD), particularly those with higher levels of functional impairment, are at increased risk of hospitalization and higher hospital-associated health care costs. Our objective was to provide a nuanced description of reasons for hospitalizations over a 12-month period among community-living persons with dementia taking part in a dementia care coordination study using caregiver-reported data and to describe how reasons varied by disease stage.
Risks and Benefits of Screening for Dementia in Primary Care: The Indiana University Cognitive Health Outcomes Investigation of the Comparative Effectiveness of Dementia Screening (IU CHOICE)Trial
Malaz Boustani
Nicole Fowler
The benefits and harms of screening of Alzheimer disease and related dementias (ADRDs) are unknown. This study addressed the question of whether the benefits outweigh the harms of screening for ADRDs among older adults in primary care.
The Future of Dementia Care, Caregiving, and Services Research
David Reuben
With the aging of the baby boomers, the numbers of Americans
living with or affected by dementia will rise dramatically. By 2025, an
estimated 7.2 million Americans are expected to have Alzheimer’s
disease, which is the most common cause of dementia, accounting
for 60-80% of cases.
Transcending Inequities in Dementia Care in Black Communities: Lessons From the maximizing Independence at Home Care Coordination Program
Quincy Samus
We examine care partners' experience of the Maximizing Independence at Home (MIND) intervention, a multicomponent, home-based dementia care coordination program designed to provide high quality, wholistic care coordination for people and families living with dementia.
A Randomized Controlled Trial of a Community-Based Dementia Care Coordination Intervention: Effects of MIND at Home on Caregiver Outcomes
Quincy Samus
Objective: To assess whether MIND at Home, a community-based, multicomponent, care coordination intervention, reduces unmet caregiving needs and burden in informal caregivers of persons with memory disorders.
Can Persons with Dementia Meaningfully Participate in Advance Care Planning Discussions? A Mixed-Methods Study of SPIRIT
Laura Medders
Carolyn Clevenger
Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score ≥13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP.
Caregiving While Black: A Novel, Online Culturally Tailored Psychoeducation Course for Black Dementia Caregivers
Carolyn Clevenger
Background and objectives: Psychoeducation interventions using distance learning modalities to engage caregivers in active learning environments have demonstrated benefits in enhancing caregiving mastery. However, few of these programs have been specifically adapted to develop mastery in Black caregivers.
Demographics, Symptoms, Psychotropic Use, and Caregiver Distress in Patients With Early vs Late Onset Dementia
David Lee
David Reuben
Kathy Serrano
Michelle Panlilio
Understanding experiences and challenges faced by persons living with Early-Onset Dementia (EOD) compared to individuals diagnosed with Late-Onset Dementia (LOD) is important for the development of targeted interventions.
End-of-Life Care and Health Care Spending for Medicare Beneficiaries With Dementia in Accountable Care Organizations
David Reuben
Individuals with dementia may receive high-intensity care at the end of life (EOL) that does not align with their preferences and is costly. Medicare Accountable Care Organizations (ACOs) are an alternative payment model that aims to incentivize high-quality care and lower spending.
Flexibility Meets Complexity: Lessons From Practice-Based Implementation of a Dementia Care Model
Halima Amjad
People living with dementia (PLWD) are among the highest-need and highest-cost individuals because of the complexity, duration, and range of medical, behavioral, environmental, and social needs. There is a growing evidence base showing that family-centered active management approaches that include activation and empowerment of care partners are well suited to improve care quality, health-related outcomes, and healthcare costs.
Integrated Memory Care Clinic: Design, Implementation, and Initial Results
Carolyn Clevenger
Laura Medders
The Integrated Memory Care Clinic (IMCC) is a patient-centered medical home as defined by the National Committee for Quality Assurance directed by advanced practice registered nurses (APRNs) caring for persons living with dementia (PLWD); physicians provide specialty consultation but do not direct care or care planning.
MIND at Home-Streamlined: Study protocol for a randomized trial of home-based care coordination for persons with dementia and their caregivers
Quincy Samus
Dementia is associated with high health care costs, premature long-term care (LTC) placement, medical complications, reduced quality of life, and caregiver burden. Most health care providers and systems are not yet organized or equipped to provide comprehensive long-term care management for dementia, although a range of effective symptoms and supportive care approaches exist. The Maximizing Independence at Home-Streamlined (MIND-S) is a promising model of home-based dementia care coordination designed to efficiently improve person-centered outcomes, while reducing care costs.
Payment For Comprehensive Dementia Care: Five Key Recommendations From Health Affairs Forefront
Nora Super
Gary Epstein-Lubow
David Reuben
Rani Snyder
Jane Carmody
Abby Maglich
The Alzheimer’s Association estimates that Medicare spent $146 billion on Alzheimer’s disease in 2022—meaning that more than one in every six Medicare dollars will have been spent on someone with ADRD. Medicaid spent another $60.8 billion caring for these individuals.
Programmatic Research Outcomes Used to Establish the Evidence-Base of Dementia Caregiving Support Programs: An Analysis of Best Programs for Caregiving
Morgan Minyo
David Bass
Katie Maslow
A substantial number of evidence-based dementia caregiving support programs positively impact family and friend caregivers. Researchers and service organizations have successfully translated and delivered a subset of these programs to caregivers and are included in Best Programs for Caregiving (BPC).
Recommendations to Improve Payment Policies for Comprehensive Dementia Care
Kristin Lees Haggerty
Gary Epstein-Lubow
Lynn Spragens
Rebecca Stoeckle
Leslie Evertson
Lee Jennings
David Reuben
Access to comprehensive dementia care is limited. Recent changes in billing for professional services, including new physician fee schedule codes, encourage clinicians to provide new services; however, current reimbursement does not cover costs for all needed elements of dementia care.
Scaling Comprehensive Dementia Care
Nora Super
Despite scientific progress over the last 25 years, dementia remains one of the toughest health-care challenges. Alzheimer’s disease is the sixth-leading cause of death in the United States, and the number of deaths from all related dementias may be twice as high.
The Other Dementia Breakthrough-Comprehensive Dementia Care
David Reuben
Gary Epstein-Lubow
Nora Super
These are momentous times for Alzheimer disease
(AD) and Alzheimer disease and related dementias
(ADRDs). For the first time, the US Food and Drug Ad-
ministration has approved disease-modifying drugs that
bring some hope for long-term clinical benefit for per-
sons affected by mild cognitive impairment or early to
mild dementia.
An Alternative Payment Model To Support Widespread Use Of Collaborative Dementia Care Models
Malaz Boustani
David Reuben
The current US system of reimbursement for dementia care does not support the complex biospychosocial needs of families living with Alzheimer disease and related dementias. We propose an alternative payment system for dementia care that would provide insurance coverage for evidence-based, collaborative dementia care models. This payment model involves a per member per month payment for care management services that would target community-dwelling beneficiaries living with dementia and evidence-based education and support programs for unpaid caregivers. This payment model has the potential to align the incentives of payers and providers and create market demand for the implementation of collaborative dementia care models across the nation.
Chronic disease management: why dementia care is different
David Reuben
Gary Epstein-Lubow
Background and objectives: Psychoeducation interventions using distance learning modalities to engage caregivers in active learning environments have demonstrated benefits in enhancing caregiving mastery. However, few of these programs have been specifically adapted to develop mastery in Black caregivers.
Dissemination of a successful dementia care program: Lessons from early adopters
Kristin Lees Haggerty
Rebecca Jackson Stoeckle
Gary Epstein-Lubow
Lynn Spragens
Randi Campetti
Evidence-based models for providing effective and comprehensive care for Alzheimer’s disease and related dementias exist but have yet to be successfully implemented at scale. The Alzheimer’s and Dementia Care Program (ADC Program) is an effective comprehensive dementia care model that is being disseminated across the United States. This qualitative study examines barriers and facilitators to implementing the model among early adopting sites.
Expanding the use of brief cognitive assessments to detect suspected early-stage cognitive impairment in primary care
Kate Possin
Sarah Dulaney
Older adults have been uniquely and adversely affected by COVID-19 compared to younger populations. Beyond increased vulnerabilities from age alone, COVID-19 also disproportionately affects persons with dementia (PWD). Approximately 11% of U.S. older adults aged 65 and older have Alzheimer’s disease and related dementias, with 6.5 million Americans currently living with the disease.
Navigating barriers to dementia specialty care among vulnerable populations: Insight from a multidiscipline care navigation team
Kate Possin
The emergency department evaluates many patients with undiagnosed cognitive impairment and presents an opportune setting to facilitate early detection and referral to memory care specialists. We evaluated a novel care navigation pathway that facilitated referrals of ethnoculturally diverse individuals with suspected cognitive impairment from geriatric professionals embedded in the emergency department to dementia specialist care.
Perceptions, beliefs, attitudes, and knowledge of US Latino adults pertaining to dementia and brain health: a systematic review
Kate Possin
Latinos in the US are 1.5 times more likely to develop Alzheimer’s Disease and Related Dementias (ADRD) than non-Latino Whites. This systematic review aims to summarize current understanding of the perceptions, knowledge, beliefs, and attitudes about ADRD and brain health of Latinos to inform public health efforts addressing disparities.
Quality of Care Provided by a Comprehensive Dementia Care Co-management Program
Lee Jennings
Kathy Serrano
David Reuben
Multiple studies have shown that quality of care for dementia in primary care is poor, with physician adherence to dementia quality indicators (QIs) ranging from 18% to 42%. In response, the University of California at Los Angeles (UCLA) Health System created the UCLA Alzheimer's and Dementia Care (ADC) Program, a quality improvement program that uses a comanagement model with nurse practitioner dementia care managers (DCM) working with primary care physicians and community-based organizations to provide comprehensive dementia care.
Redesigning Acute Care for Cognitively Impaired Older Adults: Optimizing Health Care Services
Malaz Boustani
Cognitive impairment (CI) is one of several factors known to influence hospitalization, hospital length of stay, and rehospitalization among older adults. Redesigning care delivery systems sensitive to the influence of CI may reduce acute care utilization while improving care quality.
State of Science: Bridging the Science-Practice Gap in Aging, Dementia and Mental Health
Malaz Boustani
The workforce available to care for older adults has not kept pace with the need. In response to workforce limitations and the growing complexity of healthcare, scientists have tested new models of care that redesign clinical practice. This article describes why new models of care in aging, dementia, and mental health diffuse inadequately into the healthcare systems and communities where they might benefit older adults.
The University of California at Los Angeles Alzheimer's and Dementia Care program for comprehensive, coordinated, patient-centered care: preliminary data
David Reuben
Leslie Evertson
Kathy Serrano
Dementia is a chronic disease that requires medical and social services to provide high-quality care and prevent complications. As a result of time constraints in practice, lack of systems-based approaches, and poor integration of community-based organizations (CBOs), the quality of care for dementia is poorer than that for other diseases that affect older persons.