Dementia impacted nearly seven million people in the U.S. this year, and by 2060, the number of individuals living with dementia is expected to reach 14 million. Typically affecting older adults, dementia leads to a decline in cognitive functions like memory, reasoning, and communication, significantly impacting the daily lives and independence of affected individuals and their close family and friends.
Caregivers are critical to the quality of life for people living with dementia (PWD) and are often called the invisible second patients. In 2023, over 11 million caregivers in the U.S. provided care for someone with dementia — dedicating more than 18 billion hours of unpaid care, valued at nearly $347 billion. To better support PWD and reimbursement opportunities for their caregivers, the Centers for Medicare & Medicaid Services announced a payment model for comprehensive dementia care in July 2023. Under the Guiding an Improved Dementia Experience (GUIDE) Model, Medicare Part B providers will receive a capitated per beneficiary payment for providing integrated care that addresses both health care and daily life needs, while supporting family caregivers.
EVIDENCE ROUNDUP
This blog post is part of a Playbook series connecting evidence and implementation resources with emerging state and federal policies to help enhance services for people with complex needs.
Why is this important?
Caregivers play a crucial role in supporting PWD, but the demands of caregiving can lead to significant emotional, physical, and financial stress, known as caregiver burnout. This burnout often manifests as exhaustion, anxiety, depression, and a decline in physical health, making it challenging for caregivers to maintain their own well-being while providing care.
A key factor contributing to this stress is that dementia care does not follow a one-size-fits-all formula. As the needs of a PWD evolve, caregivers may find it overwhelming to choose an appropriate care program. To address this challenge, various programs have been developed to support both PWD and their caregivers. These programs offer resources such as respite care, support groups, and educational workshops to help caregivers manage stress.
Caregivers of PWD also often express a need for emotional and social support, enhanced coping strategies, and support services. Access to these resources can significantly alleviate the burden on caregivers, helping them to provide better care for their loved ones while also taking care of their own health and well-being.
Frameworks and Guiding Principles:
The following Playbook resources offer insight into dementia care implementation models to best support PWD and their caregivers:
- Dementia Care Navigation: Building Toward a Common Definition, Key Principles, and Outcomes – This study outlines key principles and recommendations for dementia care navigation programs that improve outcomes for PWD and their caregivers.
- Making the Business Case for Value-Based Dementia Care – This article provides guidance for health care systems on the value of dementia care programs that serve patients and their caregivers, including a case study related to a dementia care model.
- Working with Black Communities to Improve At-Home Care Coordination for People with Dementia – This blog post shares insights from a series of focus groups with Black caregivers about the unique needs of Black patients and families living with dementia and the caregivers’ perceived benefits of participating in the Maximizing Independence at Home program.
Specific Models and Examples
There is a growing body of evidence demonstrating the effectiveness of dementia care programs significantly enhancing the quality of life for both patients and their caregivers. These resources highlight key models and tools designed specifically for dementia care:
- Care Ecosystem Collaborative Model and Health Care Costs in Medicare Beneficiaries with Dementia – This randomized controlled trial provides robust evidence supporting the effectiveness and reductions in the total cost of care of the Care Ecosystem model — a collaborative dementia care model improving health outcomes and quality of life for PWD and their caregivers.
- Best Programs for Caregiving: Dementia Care Programs for Family Caregivers and Program Providers – This database offers resources for caregivers of people with dementia and health and social services professionals to learn more about evidence-based dementia caregiver support programs.
- Effects of the Tailored Activity Program (TAP) on Dementia-Related Symptoms, Health Events and Caregiver Well-Being: A Randomized Controlled Trial – This article profiles the Tailored Activity Program, a dementia care program delivered by an occupational therapist and tailored to the needs of patients and their caregivers, improving overall patient quality of life and caregiver well-being.
- Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward – This report examines evidence on the Collaborative Care Model and the Resources for Enhancing Alzheimer’s Caregiver Health II intervention and highlights guiding principles and core components of care that can assist health care stakeholders in improving dementia care, services, and supports.
- Designing an Interprofessional Dementia Specialty Clinic: Conceptualization and Evaluation of a Patient-Centered Model – This article examines the effectiveness of the Comprehensive Memory Center. This collaborative, interprofessional outpatient care program has shown promising outcomes for dementia care.
Share Your Dementia Care or Dementia Caregiver Resources and Tools
Do you have a resource or emerging best practice related to dementia care or dementia caregivers? Please share your experience with the Better Care Playbook. We are interested in growing our library of evidence and implementation practices to help those in the field strengthen dementia care in communities nationwide.