Supporting diverse caregivers for people with Alzheimer’s

Supporting diverse caregivers for people with Alzheimer’s

Clara cared for Pablo for five years before he passed away. He used to serenade her with his barbershop quartet and send her the most beautiful love letters. When they had a restaurant in central Phoenix, he would cook for her. But there came a time when Pablo forgot how to cook, and Clara felt very lonely.

Pablo was diagnosed with Alzheimer’s, emphysema, primary amyloidosisand kidney failure. Clara had to give up her beloved career as a professor in order to be a nurse, a cook, a caregiver and a wife to Pablo. When she put him in bed at night Pablo would say, “I feel bad because I’m so much trouble, you have to do everything for me.” 

Eventually she found an Alzheimer’s support group with Duet: Partners in Health & Aging.

“I felt safe and I could share my frustrations without feeling guilty or judged,” Clara said.

Duet recently received a $99,000 grant from the UnitedHealthcare Community Plan of Arizona to help support caregivers in the state. Duet aims to empower family caregivers to take care of themselves and find support through resources, education, and peer mentorship.

The organization offers a wide variety of support groups for caregivers including members of the LGBTQ+ community, as well as Spanish-speaking caregivers and those caring for loved ones with specific conditions including Alzheimer’s. The support groups offer safe, open spaces to discuss experiences and challenges with peers.

“For me, when something is named and acknowledged it is tremendously empowering, even if the ‘thing’ is still tremendously difficult and challenging,” said one caregiver on an anonymous feedback survey. “And there is nothing like the resonance, validation and encouragement which comes from sharing a space with like-minded people who are experiencing similar struggles.”

This culturally competent work is important in the community for several reasons. Arizona is expected (pdf) to have the highest increase in the number of people with Alzheimer’s between 2020 and 2025. Moreover, Hispanic Americans are 1.5 times more likely to develop Alzheimer’s or another form of dementia than white Americans. As rates of Alzheimer’s increase, the population of older adults also becomes more diverse. Supporting Duet means that there is greater overall support given to caregivers, which can be isolating and difficult enough without language and cultural barriers.

Sometimes the self-identification as a caregiver is the first important step in this journey.

“One of the key components of the UnitedHealthcare grant is helping us with our digital marketing,” said Nichole Barnes, director of communications for Duet. “We want to get the right culturally relevant messaging out there, to help family caregivers self-identify and create awareness.”

For Clara, she has been able to find a path forward with this support. Before Pablo died, Clara shared this message with Duet: “It is still a very difficult journey but now I have hope. While Pablo’s condition will decline, at least I know I can go on. You saved my life and my Pablito’s life.”