Comprehensive Dementia Care: The UCLA Alzheimer's and Dementia Care Program

Alzheimer's disease and related dementias pose a significant and growing challenge to individuals, families, and communities. With the aging population increasing, the number of Americans affected by Alzheimer's is projected to reach 13 million by 2050. In response to this escalating crisis, the Mary S. Easton Center for Alzheimer's Research and Care at UCLA (UCLA Easton Center) is dedicated to advancing research, care, and support for all those impacted by these devastating disorders. The UCLA Health Alzheimer’s and Dementia Care Program (ADC Program) stands as a crucial component of this effort, providing comprehensive and coordinated care to patients and their families.

The Mission and Core Principles of the ADC Program

The UCLA Alzheimer's and Dementia Care Program is designed to address the complex medical, behavioral, and social needs of individuals living with Alzheimer's disease and other types of dementia. The ADC Program's mission is to maximize the patient’s ability to function, while maintaining independence and dignity. Our team also works with families and caregivers to minimize caregiver strain and distress. All patients receive an annual comprehensive assessment to ensure that ongoing and emerging needs are met.

The UCLA ADC program partners with community-based organizations (CBOs) to provide comprehensive, coordinated, patient-centered care for patients with Alzheimer’s disease and other dementias. The goals of the program are to maximize patient function, independence and dignity, minimize caregiver strain and burnout and reduce unnecessary costs.

The UCLA ADC program consists of five key components:

Patient recruitment and a dementia registry.
Structured needs assessments of patients in the registry and their caregivers.
Creation and implementation of individualized dementia care plans based on needs assessments and input from the primary care physicians.
Monitoring and revising care plans, as needed.
Access 24/7, 365 days a year for assistance and advice.

Comprehensive Dementia Care Services

The UCLA Health Alzheimer’s and Dementia Care Program (ADC Program) provides support for patients who have already received a diagnosis of Alzheimer’s disease or other types of dementia. When patients first establish care with the ADC Program, their Dementia Care Specialist will conduct a comprehensive evaluation. Each patient and family are given a personalized care plan, including recommendations for their medical, behavioral, and social needs. Care plans are modified over time to meet the evolving needs of our patients.

24/7 Access

For established patients and families, we provide 24/7 telephone access to a provider.

Caregiver Resources

We offer extensive caregiver education and support, both within the UCLA healthcare system and partnered with local community-based organizations.

Support Groups

The Mary S. Easton Center in the Department of Neurology and the UCLA Alzheimer's and Dementia Care Program in the Department of Geriatric Medicine offer various support groups. These support groups provide a supportive environment in which to give and receive emotional and practical support from others who are on the same journey of caring for someone with dementia.

These groups include:

General Alzheimer's and Dementia Evening Caregiver Support Group (1st and 3rd Mondays of the month)
General Alzheimer's and Dementia Young Adult Children Caregiver Support Group (1st and 3rd Tuesdays of the month)
General Alzheimer's and Dementia Adult Children Caregiver Support Group (2nd and 4th Tuesdays of the month)
General Alzheimer's and Dementia Caregiver Support Group for Spouse/Partner Only (1st and 3rd Wednesdays of the month)
General Alzheimer's and Dementia Caregiver Support Group (1st and 3rd Wednesdays of the month)
General Alzheimer's and Dementia Caregiver Support Group (2nd and 4th Wednesdays of the month)
Young-Onset Alzheimer's Disease (AD) Caregiver Support Group
Frontotemporal Dementia (FTD) Telephone Support Group
Lewy Body Dementia (LBD) Caregiver Support Group
Grupo de Apoyo Para Cuidadores de Pacientes con Alzheimer y Demencia [en español]

Innovative Programs and Initiatives

The UCLA Alzheimer's and Dementia Care (ADC) Program is actively involved in several innovative programs and initiatives aimed at improving dementia care. These include:

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ADC ECHO Series: A series of educational programs hosted by the UCLA Alzheimer’s and Dementia Care (ADC) Program, with support from The John A. Hartford Foundation.
Better Caregiving for All: A monthly virtual series accessible via Zoom that addresses the needs of populations that have not been the focus of traditional caregiver training/education in the past.
National Dementia Care Collaborative (NDCC): Aims to improve access to evidence-based comprehensive dementia care by providing a common platform for health systems and other provider organizations.

UCLA Integrated Memory Clinic

The UCLA Integrated Memory Clinic is a component of Mary S. Easton Center for Alzheimer's Research and Care at UCLA (UCLA Easton Center) and specializes in the evaluation and diagnosis of Mild Cognitive Impairment, early Alzheimer's disease, Frontotemporal dementia, and related disorders. An early diagnosis enables patients to take advantage of the most effective therapies and to maintain the highest level of functioning for the longest period of time.

Services offered by the UCLA Easton Center include:

Neuropsychological testing
Initial evaluations
Second opinions
Follow-up medical care after initial diagnosis
Research opportunities including clinical drug trials
Linkage to community social services

The evaluation process is usually completed in two visits with scheduled diagnostic tests between the two appointments. Diagnostic tests may include a neuropsychological assessment, functional brain imaging, structural brain imaging, and lab work. Patients have the option of receiving ongoing clinical management of their memory loss or dementia symptoms at UCLA. Educational information and referrals to appropriate community resources are provided to patients, families, and caregivers. Referral of eligible patients to research programs including the Mary S. Easton Center for Alzheimer's Research and Care at UCLA, the Alzheimer's Disease Cooperative Study, as well as clinical drug trials designed to develop new therapies for memory loss, Alzheimer's disease and other dementias.

New drugs are continuously being evaluated for their usefulness in treating Alzheimer's disease. Patients are evaluated for clinical trials and invited to participate if appropriate.

UCLA Memory Disorders Clinic at Olive View

The Memory Disorders Clinic at UCLA-Olive View Medical Center is under the leadership of Alejandra Sánchez López, MD. This clinic specializes in the diagnosis and treatment of patients with memory and cognitive disorders, dementia, and Alzheimer's disease. The majority of patients are from the Hispanic community in the San Fernando Valley, but the clinic cares is for both English and Spanish speaking patients. Comprehensive evaluations by a multidisciplinary team of physicians, nurses and neuropsychologists are provided for people with memory problems or suspected Alzheimer's disease.

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Dissemination and Impact

The Alzheimer’s and Dementia Care Program, developed at UCLA, has been shown to improve care for people living with dementia and their family caregivers and this grant will support national dissemination of the program through health systems. The initiative will develop flexible options for program uptake, continued education of clinicians in dementia care, promotion of comprehensive payment models and development of an Alzheimer’s and Dementia Care Dissemination Center and a National Dementia Care Learning Collaborative.

Challenges and Future Directions

Despite its success, the UCLA ADC has had challenges that other institutions would need to face in implementing similar programs. First, identification of patients with dementia has not been straightforward. Although we expected that the billing system would capture the vast majority of patients with dementia, only a minority of patients enrolled (26%) to date have been identified through billing diagnoses. Physicians may be reluctant to assign a diagnosis of dementia for financial (lower reimbursement for psychiatric diagnostic codes) and social reasons, including patient or family preference. Second, dementia evaluations and medical/psychological histories recorded in the medical record have been highly variable reflecting clinical practice rather than a research setting and the limitations of medical record documentation. Thus, it has taken substantial time for the DCM to distill the needed clinical information. Third, delineating the role of the DCM with respect to medical conditions that may affect or be affected by cognition (e.g., managing falls) has required some negotiation of clinical boundaries with referring physicians. Some have felt comfortable in allowing the DCM to manage any related condition whereas others have restricted the program’s management to care directly related to dementia. Fourth, the data collection, documentation, and communication burden have been large.

Conclusion

The UCLA Alzheimer's and Dementia Care Program represents a comprehensive and innovative approach to addressing the multifaceted challenges of Alzheimer's disease and related dementias. By providing patient-centered care, caregiver support, and community partnerships, the ADC Program strives to maximize the quality of life for individuals and families affected by these devastating conditions. As the aging population continues to grow, the UCLA Alzheimer's and Dementia Care Program will play an increasingly vital role in advancing research, care, and support for all those living with Alzheimer's disease and related disorders.

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