Spotlight on Alzheimer's Disease and Related Dementias
It is estimated that by 2050, more than 13 million Americans of all ages will be living with Alzheimer’s disease (AD) or other forms of dementia, and the cost of care will swell to approximately $1.2 trillion. The rapidly climbing number of those affected with dementia includes a growing population of Veterans, who may have an added risk for the disease as a consequence of traumatic brain injury, posttraumatic stress disorder, and other service-related injuries. The increasing number of those affected, the long duration of disability, and the rising societal cost of care are further compounded by this Veteran population that is much younger, with an increased risk of AD and other dementia, and who may experience decades-long periods of disability and care1.
VA provides extensive care for Veterans with AD and other forms of dementia through home-based primary care, home health aides, respite and hospice care, outpatient and inpatient services, adult day health care, and nursing homes2. The combination of lengthy debilitation, a growing population, and rising costs of care underscores the necessity for VA research to address current needs and plan for future needs.
VA researchers are focused on potential drug therapies, genetic and environmental causes, and long-term care models for patients, as well as working to better understand the connection between Alzheimer’s and chronic diseases. VA investigators are also looking at ways to support and nurture family members who care for Veterans with AD in their own homes3. Following are some examples of HSR&D research into Alzheimer’s disease and dementia care.
Behavioral symptoms of dementia are universal, found in all types and stages of dementia. The results of this study may benefit Veterans, their families, providers, and policymakers by clarifying the impact of current initiatives to reduce antipsychotic prescribing and also describe the potential unintended consequences of such efforts.
Given significant concerns about risks and benefits, VA and the Centers for Medicare and Medicaid Services (CMS) have each embarked on initiatives to reduce off-label use of antipsychotic medications (APs) for the behavioral and psychological symptoms of dementia (BPSD). VA policymakers use the percent of residents on APs in Community Living Centers (CLCs) as the main quality indicator for BPSD. In addition to CLCs, policymakers remain concerned with high rates of AP use in community settings. Policies focused entirely on reducing AP use may have caused unintended consequences, such as providers shifting patients to alternative psychotropic classes of drugs that have even less evidence of benefit and similar risks, including benzodiazepines, mood stabilizers, and antidepressants. Rather than substituting other psychotropic medications, multiple expert bodies recommend the use of behavioral and environmental interventions as the preferred alternative to APs for BPSD.
This study sought to examine the system- and facility-level consequences of VA and non-VA initiatives related to dementia intended to reduce AP prescribing. Specific aims of this study are to:
1) Determine system-level VA national trends in psychotropic use among patients with dementia from 2009 to 2018.
2) Examine CLC level variables associated with AP prescribing in dementia patients.
3) Validate additional quality indicators for VA patients with dementia for both CLC's and community settings.
For aim 1, the research team used VA national health system administrative data to examine the impact of initiatives to reduce antipsychotic use in dementia. To meet aim 2, the team classified CLC's into groups using variables that may reflect both unintended and desired consequences in quality of care for CLC residents with BPSD. Finally, informed by the findings from Aims 1 and 2 regarding factors that are associated with quality of care for Veterans with dementia, investigators used a panel of experts and stakeholders in dementia care and BPSD to discuss additional potential quality indicators.
Principal Investigator: Kara Zivin, PhD, MS, MA, MFA is with the Center for Clinical Management Research (CCMR) at the VA Ann Arbor Healthcare System, Ann Arbor, MI.
Approximately 500,000 Veterans have dementia and most of these individuals receive care at home from informal caregivers (CGs). Patient/CG-centered, integrated care management programs that also include CG education, psychosocial support, and skills training have the capacity to significantly facilitate use of services and to improve outcomes, including quality of life, for Veterans with dementia and their families. This study has the potential to be applicable across VA and community-based care settings.
Existing interventions for informal caregivers of care recipients (CRs) with dementia vary with regard to content, administration time, and mode of delivery, and findings indicate that these programs are effective in improving CG and CR outcomes. The study team has developed and evaluated two CG programs that are unique in that they are relatively brief (3 months) and rely solely on telephone administration. The original program, the Telehealth Education Program (TEP), provides CG support, psychoeducation, and skills training in a group format. The second program adapted the original TEP to be delivered to individual CGs and includes collaborative care management services. Key components of this CR/CG-centered program include direct collaboration among teams of care managers, primary care providers (PCPs), and caregivers. However, an individually-delivered program lacks the benefits derived from the mutual peer support and feedback provided by group-based interventions. Thus, investigators hope to determine whether modifying the individually-delivered care management program to deliver TEP in a group format is more effective than the individually-delivered program alone.
The objectives of the project include:
- Comparing the effectiveness of individual care management + individual TEP vs individual care management + group TEP vs usual care.
- Examining whether the individual or individual + group intervention is more effective/acceptable in spousal vs. adult children CGs.
- Exploring whether the effectiveness of the CG interventions is mediated by changes in the social networks of CGs.
Participants included 319 CGs of Veterans diagnosed with dementia and who received routine clinical care at two VA sites. CGs were randomly assigned to usual care, the individual intervention, or the individual + group intervention. In both intervention arms, CGs received education, continuous support, skills training, and monitoring of Veterans' medication adherence, symptoms, and service needs. In the usual care arm, participants were sent general material about VA and community resources for patients with dementia and their CGs.
The usual care group was free to seek medical, psychological, social support, and social services that are available through VAMCs or any other non-VA/community source. The main objectives of both interventions were to facilitate resource connection and provide education, psychosocial support, and care management for individuals caring for Veterans with dementia, thereby improving access to and use of non-institutional services, rates of guideline adherent care, and CG/CR outcomes.
Preliminary results suggest that compared to CGs receiving usual care, CGs enrolled in both intervention arms experienced greater reductions from baseline to 3-month follow-up in reported distress due to CRs’ dementia-related symptoms.
Principal Investigator Shahrzad Mavandadi, PhD, is with the Center for Health Equity Research and Promotion (CHERP) and the Mental Illness Research, Education and Clinical Center (MIRECC) in Philadelphia, PA. The Co-Principal Investigator, Dr. Laura Wray, is Executive Director of the Center for Integrated Healthcare (CIH).
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This project's findings have implications for VA Community Living Center (CLC) policy as it pertains to methods of care delivery, to further improve quality of care and Veteran outcomes. Montessori Activity Programming (MAP) has been shown to be effective for a variety of resident outcomes: increased socialization, retention of intact cognitive abilities, activity engagement, caloric intake, reduced antipsychotic and sedative use, and reduced behavioral disturbances.
Over 40,000 Veterans receive care in VA CLCs nationwide each year, more than half being diagnosed with mental health disorders and / or dementia. Behavioral disturbances are reported in nearly 70% of individuals with dementia or serious mental illness and dementia. Frontline staff need evidence-based practical tools and strategies for engaging Veterans in meaningful activities that promote quality of life and reduce behavior disturbances. Montessori-based Activity Programming (MAP) may fulfill this need. MAP is a community nursing home-developed, evidence-based intervention that enables resident engagement in structured, meaningful activities using clearly outlined principles and strategies focusing on resident strengths. A series of studies on the application of MAP for dementia has shown decreased behavioral disturbances such as yelling and aggressive behavior, as well as demonstrated improvements in basic cognitive abilities such as attention and object permanence, social behavior, increases in active engagement, reduced agitation, and reduced antipsychotic and sedative use.
This study sought to:
- Adapt MAP for use with Veterans in VA CLCs.
- Develop a delivery strategy for the complex and difficult-to-change CLC system that is not dependent on MAP's lengthy, in-person training.
- Test the adapted program and training strategy to finalize it for regional or national roll out.
The study was done in 3 phases using mixed-methods and a sample of 8 CLCs. Phase 1 focused on expert advisory panel recommendations, and completion of initial interviews at two sites to adapt the existing MAP training materials and develop the delivery guide. These efforts resulted in tailored training and implementation approaches for use on VA neighborhoods (within CLC’s a “neighborhood” is a cluster of beds, typically in the range of 10-45) with interdisciplinary staff including Nursing, Recreation Therapy, and Dietary Services personnel. In phase 2 six sites implemented the guide, each over a 6-month period. Three sites used an in-person, on-the-ground training prior to the implementation period. The remaining 3 sites used a remote strategy where training and follow up were done via conference and video calls. In phase 3, investigators revised and finalized the “MAP-VA” guide and implementation plan, making it ready for regional or national use.
- In the first two months of implementation, staff reported delivering more than 14 Montessori activities per CLC neighborhood on average, with more than 20 staff contributing.
- Six months after initial training, evidence of sustainment was observed with more than 10 activities being offered per neighborhood per month and more than 13 staff contributing, on average.
- Veterans reported improvement in resident satisfaction with the CLC, and improved indicators of person-centered care (e.g., belonging, atmosphere, individualized care and services).
- Qualitative interviews with staff also revealed positive impacts for both staff and residents.
A new hybrid implementation-effectiveness trial was funded by HSR&D (IIR 19-413, Hilgeman, PI) this year to further evaluate implementation and sustainment of MAP-VA as well as impacts on clinical outcomes for residents in the CLC (e.g., agitation, psychotropic medication use). MAP-VA now has its own SharePoint site (VA network access only).
Principal Investigator: Michelle M. Hilgeman, PhD, is a Research Clinical Psychologist and Investigator with the Tuscaloosa VA Medical Center, Tuscaloosa, AL.
Two New Career Development Awards Focus on Dementia Caregivers
This project has the potential to meaningfully impact the delivery of mental health care to aging Veterans. The methodology employed will support rapid dissemination and implementation of the final, effectiveness-tested intervention, and findings will inform development of future interventions to address modifiable factors associated with mental health care access and outcomes.
This project utilizes an innovative approach to increasing caregiver involvement in mental health (MH) care by training health care providers in knowledge and skills for effective caregiver engagement. As such, this project offers new directions for improving mental health care quality and access for aging Veterans. The resultant systems intervention may be applicable across VA care settings and could positively impact employee engagement through increased provider self-efficacy.
Objectives will be achieved through three specific aims:
1) Using existing data, examine associations of intensity of informal caregiving and cognitive status with MH care utilization by aging Veterans.
2) Identify patient-, provider-, and system-level factors that support or impede caregiver engagement in mental health care for aging Veterans with dementia.
3) Develop and pilot-test a provider training curriculum and implementation strategy to improve mental health provider engagement of caregivers of Veterans with dementia.
Principal Investigator: Mary Wyman, PhD, is a health services researcher and clinical geropsychologist at the William S. Middleton Memorial Veterans Hospital in Madison, WI. She leads the initiative for staff education and culture change which resulted in the Madison VA being recognized in 2017 as the first Dementia Friendly VA Hospital in the nation.
GamePlan4Care (GP4C) is a novel, web-based training platform designed to fully replicate the core components of an existing caregiver support program in an acceptable and scalable online platform informed by user-centered testing. This project will combine evidence-informed care transitions training with an existing dementia caregiver support intervention to create a new and unique intervention: Hospital GP4C. Using a Planned Adaptation Approach, investigators will build on the existing GP4C platform to incorporate the robust evidence supporting tailored care transitions training and support.
Hospital admissions are sentinel events for Veterans with Alzheimer’s disease and related dementia (ADRD) and their family caregivers. Adults with ADRD are often discharged from the hospital with new functional and cognitive limitations, which increases demands on family caregivers following discharge. These changing caregiver demands increase caregiver stress, which can lead to worse outcomes for caregivers and care recipients. Research has demonstrated that care transition interventions started in the hospital can improve outcomes for patients. Furthermore, care transition interventions started in the hospital and designed specifically to meet the needs of stroke caregivers have been shown to reduce caregiver burden and anxiety and reduce acute care resource use following discharge. To date, supporting tailored interventions to meet specific caregiver needs has not been translated to the support for dementia caregivers during care transitions.
Resources for Enhancing Alzheimer’s Caregiver Health (REACH II) is a multicomponent, evidence-based ADRD caregiver support program that has been adapted and implemented in VA as REACH VA. When delivered in the community, REACH II and REACH VA were associated with improvements in caregiver depression, social support, and self-care and a decrease in caregiver burden and problem behaviors in the care recipient. Evidence-based interventions like REACH II are challenging to scale due to the need for one-on-one interactions between caregivers and dementia care specialists for skills training. GamePlan4Care (GP4C) is a novel, web-based training platform designed to fully replicate the core components of REACH II in an acceptable and scalable online platform informed by user-centered testing. With adaptation to the hospital setting to include care transitions training, GP4C has great potential to transform the support of ADRD caregivers during care transitions. This project will combine evidence-informed care transitions training with an existing dementia caregiver support intervention to create a new and unique intervention: Hospital GP4C. Using a Planned Adaptation Approach, investigators will build on the existing GP4C platform to incorporate the robust evidence supporting tailored care transitions training and support. In addition, the project will evaluate caregiver-reported outcomes and retention rates in a pilot randomized study of Hospital GP4C compared to health education.
Principal Investigator: Molly Horstman, MD, is a hospitalist and health services researcher at the Michael E. DeBakey VA Medical Center in Houston, TX.