Mayo Clinic and UsAgainstAlzheimer’s research paper published in  Journal of Applied Gerontology

Washington, D.C. (October 15, 2019) – A new study spotlights the often-overlooked need for family caregivers of people with Alzheimer’s disease to be more engaged by physicians during medical appointments with their loved ones. The research by Mayo Clinic and UsAgainstAlzheimer’s was published in the Journal of Applied Gerontology.

The paper identified seven best practices to bring family caregivers more into the clinical appointments of people with Alzheimer’s and dementia.

This research provides a unique perspective on the often-overlooked views of patients and their caregivers of a medical appointment experienced through the lens of people with Alzheimer’s and dementia, their caregivers and physicians. Previously, studies in this area typically have centered on the view of medical providers of how to engage caregivers and people with Alzheimer’s and dementia, with the expectations of caregivers and those with the disease not considered.

“Our study gives voice to people with mild cognitive impairment and their caregivers and identifies potential best practices to integrate caregivers of people with Alzheimer’s disease and related dementias into clinical appointments through individual and systemic adoption,” said Joan Griffin, Ph.D., study co-author and the Robert D. and Patricia E. Kern Scientific Director for Care Experience at Mayo Clinic. “These practices are rarely assessed but critical for developing models of care that meet the needs of people with Alzheimer’s and related dementias and their caregivers, who remain the cornerstones to the health and well-being of this growing population.”

Family members caring for people with Alzheimer’s disease and related dementias are often responsible for a significant share of care, including medications, support with behavior and impaired memories, healthcare and mitigating risks associated with the progression of the disease. The role and importance of the caregivers in medical appointments increases over time; it is beneficial in earlier stages of Alzheimer’s to provide clinical support for sustaining the patient’s autonomy, but becomes imperative when a person with the disease has decreased capacity to reliably articulate personal health information, independently make treatment decisions, or communicate preferences.

The research team recommends as best practices that healthcare providers recognize the important perspectives of both the patient and the caregiver, the need to communicate directly with patient and provide opportunities for caregivers to have separate interactions with the providers. They also report that healthcare providers should be trained in shared decision-making as the patient’s condition evolves and to remember there are different perspectives from the caregivers and the people with Alzheimer’s and dementia. 

“When doctors don't actively engage family members in the patient conversation during an appointment, it creates a void of vital information that could help the patient's care,” said Meryl Comer, a 22-year at-home caregiver and an UsAgainstAlzheimer’s co-author of the study.

The study was based on online focus groups of people with mild cognitive impairment, as well as spousal and non-spousal caregivers. Participants were recruited through UsAgainstAlzheimer’s A-LIST®, a unique online network of over 8,000 people, including those with Alzheimer’s or another dementia, or at risk for the disease, and current or former caregivers.

“The UsAgainstAlzheimer’s A-List® online community gives voice to those living with Alzheimer's and their caregivers and validates what matters most for people across the disease spectrum,” Comer said “Sharing the research survey results back with the patients and caregivers provides priceless feedback that you are not alone in your journey and that your insights help advance research to improve quality of life.” 

Other best practices in the paper included ways for healthcare providers to build trust with caregivers and people with dementia, increased coordination among healthcare providers on care, and greater use of a “family-centered” approach to care, where the caregiver’s well-being is considered an important part of the care for the person with Alzheimer’s and dementia.

The people with Alzheimer’s and dementia and caregivers participating in the study also wanted additional training on the disease, effective treatments and what behaviors to expect. And the caregivers and patients wanted providers to communicate better and help set the expectations about how changes in cognition will begin a shift in the autonomy and safety of the person with Alzheimer’s and dementia to the caregiver – and how both roles will change over time.

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About UsAgainstAlzheimer’s

UsAgainstAlzheimer’s (UsA2) is a disruptive advocacy and research-focused organization that is pushing for expanding treatments and accelerating towards a cure for Alzheimer’s disease. UsA2’s transformative programming is laser-focused on proactive brain health across the lifespan and understanding what matters most across the lived experiences of those affected by Alzheimer’s in the service of preventing, treating and curing this disease. We are working to ensure that all communities have their voices heard, and get a chance to be brain healthy from the earliest years while building resistance to and resilience against possible cognitive decline.

About Mayo Clinic

Mayo Clinic is a nonprofit organization committed to innovation in clinical practice, education and research, and providing compassion, expertise and answers to everyone who needs healing. Visit the Mayo Clinic News Network for additional Mayo Clinic news and An Inside Look at Mayo Clinic for more information about Mayo.