Caring for the Caregiver
There is more than one patient in cases of Alzheimer's disease and dementia
The Los Cuidadores Latinos Unidos (or in English, United Latino Caregivers) project has its roots in the United Community Center’s Latino Geriatric Center, which opened in 2007 to serve individuals with physical difficulties, Alzheimer’s disease and other forms of dementia.
The current project team includes Al Castro, MS, BSW, Program Director at the United Community Center, Zeno Franco, PhD, Assistant Professor of Family and Community Medicine at the Medical College of Wisconsin (MCW), Melissa DeNomie, MS, Program Coordinator at MCW and Militza Bonet-Vazquez, MPH, Research Program Coordinator at the United Community Center. The project was initiated by Dr. Alan Wells, now at Miami University, who held a brainstorming session on the topic of Latino health disparities with partners at the United Community Center. During their conversation, they developed a new project focusing on Latinos who provide care for elderly relatives who have Alzheimer’s disease or related dementias.
“We do a lot for the elder with dementia,” Castro said, “but we haven’t had the resources to do more for family caregivers. And we were seeing stress levels rise as the dementia became more severe.”
The Latino caregivers at the heart of this project were not being targeted by other programs. Instead, the caregivers tried daily to support their loved ones with dementia. Many had insufficient help from other relatives or community resources. Some lifted the heavy load alone.
“Instead of relieving stress through social events, outside interests or time away from work, many Latino caregivers literally have to, or feel the need to, provide around the clock care for their loved one,” Dr. Franco said.
“Whether due to factors like cultural beliefs, language barriers or family dynamics, this level of caregiving has broad implications for the caregivers’ social, physical, psychological and spiritual well-being,” DeNomie added.
“We need to recognize that Alzheimer’s disease and other dementias have more than one patient,” Castro noted, “as the effects of the disease take its toll on the sufferer and his or her family caregivers.”
The United Latino Caregivers project received funding from the Advancing a Healthier Wisconsin endowment’s Healthier Wisconsin Partnership Program in 2012 to develop and pilot a new approach. The team provided better support for caregivers through a program delivered in the home and through a series of workshops, adapting an evidence-based mental health intervention model for Latinos.
“The Behavior Activation intervention,” DeNomie said, “aimed to help caregivers develop and practice healthy and sustainable self-care habits to better weather the terrible effects of dementia.”
Project members conducted eight workshops in which participants learned from each other, from experts on aging, and discussed the caregiving experience in groups which were composed of other Latinos in similar situations and conducted in Spanish.
“The topics,” Castro said, “were based on feedback from participants, like stress management, understanding the disease, and how to handle certain behaviors.”
These sessions, as well as the home visits, provided an important avenue for talking about subjects, like dementia, that are sensitive in the Latino community. One participant family, upon signing up, left Castro a note that read: We are so glad someone cares!
The United Latino Caregivers project also cares about developing an evidence-based program that can be used elsewhere to benefit the Latino community beyond Milwaukee.
“Every caregiver received six months of intervention with progress tracked in intervals,” Castro said.
“Then it was up to the research team to analyze how quality of life changed,” Dr. Franco added. “In the pilot population, the caregivers’ self-reported depression scores were significantly decreased. The caregivers also reported increased levels of social connectedness.”
The team discussed its findings regularly with peers, including at both the Wisconsin Alzheimer’s Association conference and the University of Wisconsin-Parkside’s Aging Well conference in May of 2014.
“The Medical College of Wisconsin team has talked about the research implications, while my main focus has been the lessons we’ve learned about how to adapt programs like ours for Latino caregivers and their families,” Castro said.
“By sharing our experience, we hope other organizations across the state can take this idea and adapt it to their ethnic communities to provide care for the many caregivers who need it.”
March 2013 - The Latino Geriatric Center at the United Community Center was recognized by The Business Journal with an Eureka Award in the category of Health Care.
Advancing a Healthier Wisconsin Endowment Research and Education Program (REP)
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Advancing a Healthier Wisconsin Endowment Healthier Wisconsin Partnership Program (HWPP)
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