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
the short run, there are relatively simple things that providers can do to
improve the quality of care,” says study lead author Joan Griffin,
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.”
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.
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.”
seven best practices the researchers identify are:
trust with caregivers and people with dementia
acknowledge caregiver roles and assess caregiver’s unmet needs and capacity to
directly with people with dementia and provide opportunities for caregivers to
have separate interactions with the providers
provider knowledge of the disease and training on how to communicate knowledge
and assess caregiver needs and provide information about helpful resources to
contact for additional support
care between members of the clinical team
providers in shared decision making and how to resolve conflicts with
caregivers and people with dementia
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
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.
researchers say that while some of the best practices are simple, like building
trust, others could take time and investment from medical institutions, like
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.
researchers say providers could train on: prognosis and disease course for
different types of dementia; effective medications; caregiver resources; and
compassionate communication skills.
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.
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.
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
all of UsAgainstAlsheimer’s.
researchers report no conflicts of interest.
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