People with Alzheimer’s disease and other forms of dementia often rely on family caregivers to plan or assist with their medical care. But caregivers are not usually fully integrated in their family members’ clinical appointments or care plan. To identify gaps in care and communication, Mayo Clinic researchers have identified seven best practices for health care providers when working with dementia patients’ caregivers. The study published recently in the Journal of Applied Gerontology.

“In the short run, there are relatively simple things that providers can do to improve the quality of care,” says study lead author Joan Griffin, Ph.D., a scientific director in the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery. “That includes acknowledging caregivers’ commitment and recognizing their expertise.”

Dr. Griffin, who studies how caregivers affect the long-term health of patients with brain injury, says many caregivers emphasize that their family member with dementia should be at the center of any clinical appointment: They should be seen and heard, regardless of how advanced the disease is.

One study participant said, “No matter what stage of Alzheimer’s the patient is in, questions dealing with their care should be addressed to them first and then when there is no answer, the eye contact goes to the caregiver.”

The seven best practices the researchers identify are:

• Build trust with caregivers and people with dementia
• Respectfully acknowledge caregiver roles and assess caregiver’s unmet needs and capacity to care
• Communicate directly with people with dementia and provide opportunities for caregivers to have separate interactions with the providers
• Improve provider knowledge of the disease and training on how to communicate knowledge
• Screen and assess caregiver needs and provide information about helpful resources to contact for additional support
• Coordinate care between members of the clinical team
• Train providers in shared decision making and how to resolve conflicts with caregivers and people with dementia

Dr. Griffin says the idea of separate appointments for caregivers to talk with providers is a priority for many of the study participants. This would allow providers to collect patient information in a respectful way, the researchers say.

“Caregivers really want to assure the dignity of their loved one, but also want providers to be fully informed of changes or concerns – without embarrassing their loved ones,” she adds.

The researchers say that while some of the best practices are simple, like building trust, others could take time and investment from medical institutions, like training providers.

“I don’t think there is a lot of provider training on how to communicate with people who have cognitive impairment, nor is there training on how to effectively interact when there are more than two people in the room,” Dr. Griffin says.

The researchers say providers could train on: prognosis and disease course for different types of dementia; effective medications; caregiver resources; and compassionate communication skills.

For the study, the researchers – with the help of the nonprofit organization UsAgainstAlzheimer’s – convened three online focus groups of caregivers and people with mild cognitive impairment totaling 93 participants across the U.S. and Canada.

Dr. Griffin says the team would like to pursue additional research in this area, including training for providers to work with caregivers of people with dementia, and testing if a separate appointment for caregivers improves quality of care for dementia patients.

The study’s senior author is Lauren Bangerter, Ph.D., a researcher in the Mayo Clinic Kern Center for the Science of Health Care Delivery. The study’s co-authors are Rachel Havyer, M.D., Mayo Clinic, Catherine Riffin, Weill Cornell Medicine, and Virginia Biggar, Meryl Comer, and Theresa Frangiosa, all of UsAgainstAlsheimer’s.

The researchers report no conflicts of interest.

This research was funded in part by the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, and through collaboration with UsAgainstAlzheimer’s.

Tags: Alzheimer's disease, caregivers, Center for the Science of Health Care Delivery, dementia, Findings, Joan Griffin, News, patient experience, Rachel Havyer, shared decision making