Caring for the Caregiver

There is more than one patient in cases of Alzheimer's disease and dementia    Al Castro & Melissa DeNomie

The 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. In Spanish, the program is called “Los Cuidadores Latinos Unidos.”

In a brainstorming session centered around health disparities, the research team, including Al Castro of the United Community Center and Melissa DeNomie of the Medical College of Wisconsin, developed a new project focusing on Latinos who provide care for elderly relatives. 

“We do a lot for the elder with dementia,” Castro said, “but we haven’t had the resources to do more for caregivers.  And we were seeing stress levels rise as dementia became more severe.”

The Latino caregivers at the heart of this project were not being targeted by other programs.  Instead, the caregivers labored 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,” DeNomie 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.”

The United Latino Caregivers project is providing better support for caregivers through a program delivered in the home and through a series of workshops. 

“The intervention,” DeNomie said, “aims to help caregivers develop and practice healthy and sustainable self-care habits to better weather the terrible effects of dementia.”

The team received funding from the Healthier Wisconsin Partnership Program in 2012 to develop and pilot their new approach. 

Project staff has conducted three workshops as of March 2013.  Participants in these seminars have learned from each other, from experts on aging, and have discussed the caregiving experience in groups conducted in Spanish and composed of other Latinos in similar situations.

“The topics,” Castro said, “are 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, have 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 receives six months of intervention with progress tracked in intervals,” Castro said. “Then it is up to the research team to see if quality of life improves.”

Preliminary findings will be presented at the Alzheimer’s Association state conference in May 2013.

“Melissa and the Medical College of Wisconsin team will talk about the research, and my main focus will be lessons learned and how to adapt programs for the Latino caregiver and family,” Castro said.  “By sharing our experience, other organizations across the state can take this idea and adapt it to their communities.”

The conference marks an important milestone on the path to achieving the project’s ultimate goal.

“Our vision,” Castro said, “is that this becomes an automatic, default program for providers in the field of dementia care with Latinos.  We need to recognize that Alzheimer’s disease has more than one patient.”

Caregivers, too, need care.  And the promising United Latino Caregivers project may hold just the right prescription.

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.

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Page Updated 03/31/2015