Individuals with Alzheimer’s and dementia-related conditions could benefit from stronger caregiver programs upstream of end-of-life care. This is according to recent research findings, which could help inform approaches to care under the new Guiding an Improved Dementia Experience (GUIDE) payment model.

Current dementia care models have room for improvement when it comes to support for patients and their families, according to Dr. Lee A. Jennings, researcher at the University of Oklahoma Health Sciences Center.

Caregivers often lack the full scope of practical, financial, psychosocial and emotional support needed to care for dementia patients, Jennings indicated. The long-term nature of dementia conditions can take tremendous tolls on caregivers, with the strain having potential ripple effects on patients’ ability to receive goal-concordant care, she stated.

“We’ve come a long way in hospice with dementia care, but there are still areas where we struggle with caregiver respite even at the end of life,” Jennings told Hospice News. “Dementia is a long disease, and people need additional support beyond hospice in sort of a palliative-hospice model in that last year of life. They often have long periods of caregiving. They have a lot of medical tasks, and provide a lot of support with activities of daily living. It can be really impactful on their own social, physical and mental health. It’s important that caregivers have greater recognition within the health system.”

Digging into dementia care models

Nearly 2,200 dementia patients and family caregivers participated in a recent clinical trial study, the findings of which were published in the Journal of the American Medical Association (JAMA) Network. The dementia care (or D-CARE) study spanned patient and caregiver experiences in both community-based and health system settings over an 18-month period.

The study found no significant differences in patients’ behavioral health symptoms or in caregiver strain across the two settings during the timeframe.

The findings suggest that current dementia care models in community-based and health system settings may not adequately address caregiver and patient needs, according to researchers. However, the study found that caregiver self-efficacy levels were reported as significantly higher when patients received dementia care treatment compared to other health care services.

“The two interventions were better at improving caregiver self-efficacy, or the caregiver’s perceived ability to take care of dementia-related problems,” said Jennings, who was coinvestigator of the D-CARE study. “If we’re helping caregivers to feel more empowered and more skillful, the hope is that then that will translate into an important outcome [and] potentially has the opportunity to improve end-of-life care.”

Providers need stronger supportive programs that help caregivers more effectively navigate the challenges of dementia care, said principal investigator of the study Dr. David Reuben, director of geriatric medicine and gerontology at the University of California, Los Angeles (UCLA) Health system. Reuben also serves as chief of the division of geriatrics UCLA Health.

The study’s findings illustrate the “crucial” role caregivers play in the lives of dementia patients, Reuben said. Helping caregivers manage daily stress and feel confident in their roles is a significant part of providing quality care to dementia patients. Improved outcomes can be reached with greater caregiving support, he stated.

“The D-CARE trial is the largest evaluation, to date, of different approaches to providing dementia care,” Reuben said in a statement shared with Hospice News. “The study’s results underscore the complexities of dementia care and the challenges in comparing dementia care models in a real-world setting. Higher self-efficacy may lead to obtaining more resources and keeping persons with dementia in their homes.”

Examining the future of dementia end-of-life care

The findings demonstrate how the different approaches to dementia care can lead to comparable clinical outcomes, Reuben indicated. The data can be particularly valuable for institutions participating in the GUIDE payment model, he stated. 

The U.S. Centers for Medicare & Medicaid Services (CMS) launched the GUIDE model with nearly 400 participating organizations, including many hospice and palliative care providers. The payment demonstration is designed to test ways to improve quality by reducing strain on unpaid caregivers and help patients to remain in their homes and communities.

The GUIDE model could help provide a larger body of evidence around the keys to supporting dementia patients and their families, Jennings indicated.

Providers need greater insight around the effectiveness of dementia care on clinical outcomes for patients and their caregivers, she said. Having more evidence-based best practices could help drive quality and stronger goal-concordant care delivery, particularly as dementia patients’ conditions decline to more moderate and severe levels, Jennings added.

A second clinical trial is currently underway to analyze the end-of-life experiences of 514 dementia patients who died during the 18-month period of the JAMA study. Fueled by a $2.3 million grant from the National Institutes of Health (NIH), the clinical trial study is intended to evaluate whether the deceased dementia patients received goal-concordant end-of-life care during the last six months of life.

The new study examines end-of-life care costs and digs into caregiver’s feedback on the quality of care they and their loved ones received. Researchers are assessing caregiver experiences during the last 30 days of a patient’s life and also comparing end-of-life care utilization trends in community-based settings, hospitals and intensive care units. The study also includes examination of patients’ documented goals of care.

“We should do a better job of taking care of people and making sure their goals of care are met near the end of life and what they receive reflects those goals,” Jennings told Hospice News. “What I think is unique about the new study is that we’re going to be able to use several different data sources to really understand more comprehensively how these interventions help people near the end of life, but also where we might need to improve or adapt them.”