September is Healthy Aging Month and World Alzheimer’s Month. Peter Braun, adjunct lecturer at the USC Suzanne Dworak-Peck School of Social Work, discusses establishing services for minority communities facing Alzheimer’s disease.

Peter Braun is committed to improving quality of life for Alzheimer’s patients and their families. Previously serving as president and CEO of the Alzheimer’s Association California Southland Chapter for 20 years, he developed a national service delivery model for people with dementia and their caregivers in Latino, African-American and Asian-Pacific Islander communities. He also oversaw the agency’s expansion from a budget of $252,000 in 1988 to $5.7 million in 2008.

Braun has lent his expertise to a number of leadership positions, including membership on the Secretary of Health and Human Services’ Alzheimer’s Advisory Committee in Sacramento.

We sat down with Braun to discuss effective systems of care for Alzheimer’s patients, as well as what the future holds in terms of research funding and more advanced treatment for the disease.

USC Suzanne Dworak-Peck School of Social Work:  What systems of care existed prior to your involvement in the Alzheimer’s Association, and what was the model of delivery you developed?

Peter Braun: When I came to the Alzheimer’s Association in 1988, thousands of people were caring for their ailing parents or spouses, but the disease had very little visibility on a societal level. The Los Angeles chapter only provided support groups for caregivers and a few other basic services. We had a vision of expanding beyond that.

Over the next 20 years, we developed a range of programs to provide clinical, educational and support services for people with early- and middle-stage Alzheimer’s. It was important to us that our services reflected the diversity of the Los Angeles community, so we created programs specifically for African-Americans, Latinos and Asian-Pacific Islanders, including bilingual support groups and adult day care centers.

USC: Why did you specifically focus on minority communities?

PB: All groups need more services, but minority groups struggle the most to find culturally appropriate resources. I remember an instance where a staff member from Little Tokyo Service Center came in to request a Japanese translation of one of our brochures for caregivers. It turned out that our finished product was the first Japanese-language brochure for Alzheimer’s caregivers in the country.

Part of our vision for the Alzheimer’s Association was to bring families together who are facing this disease while simultaneously developing resources that address the unique challenges for minority groups. One of our cornerstone programs, which is still in existence today, is “Train the Trainer,” where we give ethnically diverse staff from Alzheimer’s Associations throughout California the tools to train caregivers in their native languages. This gives caregivers the power to advocate for themselves and their families when interacting with physicians and other medical organizations.

Another program we developed was Long Distance Caregiving. In many cases, elderly people with Alzheimer’s in LA have children living in other parts of the country. It’s not always feasible for children to take care of their parents, so the program connects them to resources for caregiving and helps them monitor care remotely.

USC: Can you speak about Alzheimer’s disease from a policy perspective? Why is it so important to develop policies at the local, state and national levels?

PB: When I came to the Alzheimer’s Association, roughly 2.5 million Americans had Alzheimer’s. Now, there are over 5 million. The disease is now the sixth leading cause of death in our country. That’s a lot of people, and that number will only grow as baby boomers age. In LA, we were able to prove that developing a richer system of care — with private, public and nonprofit organizations on board — significantly improves treatment and quality of life for patients, and we need to be able to build that network out for an aging population.

Thankfully, funding has expanded as the public has become more aware of Alzheimer’s. In 1989, the first year in which public policy forums on the disease were held, the government allocated $100 million for research. Now we’re looking at $1.4 billion. That’s great, but we definitely need more resources to effectively tackle the disease at scale. Even with increases in funding, there’s been little progress on treatment methods. Only with intensified research programs can we hope for the kind of progress necessary to make significant advances in treatment or find a cure.

Under the Obama administration, a plan called the National Alzheimer’s Project was developed through the Department of Health and Human Services (HHS). The goal of that plan was to accelerate treatments, improve early diagnosis and increase outreach for certain ethnic and racial communities. If we deplete funding for the National Institute of Health and the HHS, as the current administration is doing, all of these programs will be at risk. Much of what has been accomplished since 1980 will be challenged, unless advocates and legislators work to preserve that progress.