New study aims to improve relay of dementia diagnosis

By Michelle Jaffee

New research aimed at helping clinicians improve the way they deliver a dementia diagnosis has been published in the latest edition of Neurology: Clinical Practice. The updated best practice guidelines were developed through a working group and interviews led by University of Florida researchers, statewide collaborators, patients, caregivers and advocates.

Melissa Armstrong, M.D. (left) and Carma Bylund, Ph.D. (right)
Melissa Armstrong, M.D. (left) and Carma Bylund, Ph.D. (right)

“Research suggests that clinicians don’t always tell patients or families when a person has dementia,” said Melissa Armstrong, M.D., a UF associate professor of neurology and co-principal investigator of the project. “Sometimes when a diagnosis of dementia is given, people leave the visit feeling frustrated with the way the news was shared. With this project sponsored by the Florida Department of Health Ed and Ethel Moore Alzheimer’s Disease Research Program, we developed standards for how clinicians should give dementia diagnoses to people with memory problems and their family members.”

Armstrong and co-PI Carma Bylund, Ph.D., of UF’s department of health outcomes & biomedical informatics, led a group that included researchers from the McKnight Brain Institute; the Norman Fixel Institute for Neurological Diseases at UF Health; Florida Atlantic University; University of Miami; Mayo Clinic Jacksonville; University of South Florida; and the Alzheimer’s Association.

“A couple things set apart this project from some of the prior studies that worked on developing recommendations for how to give a dementia diagnosis well,” Armstrong said. “We involved people living with dementia, caregivers and advocates throughout the process, from early interviews to voting to writing the manuscript. This made sure that the people who receive the dementia diagnosis had a voice in the process and the standards.”

The project produced seven best-practice guidelines, to be customized for individual patients:

  • Clinicians must show compassion and empathy when delivering a diagnosis of dementia
  • They should ask patients and companions what they want to know in order to guide the diagnosis discussion
  • They should instill realistic hope
  • They should provide practical strategies (e.g., exercise and connecting to support groups)
  • They should provide education about dementia and connections to high-quality educational resources
  • They should connect caregivers to support resources
  • They should provide written summaries of the diagnoses, plan and relevant resources.

The guidelines were created by reviewing existing literature; interviewing people with dementia and their caregivers and clinicians; and assembling the working group. The working group included a person living with dementia, caregivers, representatives from the Alzheimer’s Association and neurologists, geriatricians and neuropsychologists. The group used a technique called a modified Delphi process, which involved writing out the reasoning behind each of the proposed recommendations and then holding rounds of anonymous voting on whether to approve them.

“By using anonymous voting, the person living with dementia, caregivers and advocates had the same importance as the participating clinicians,” Armstrong said.

Read the paper in Neurology: Clinical Practice