By the year 2030 when the last of the Baby Boomers turns 65, the number of Californians ages 65 and older is expected to increase to almost 9 million. And as the state experiences a “silver tsunami,” the number of older residents with Alzheimer’s disease is also expected to significantly grow. Currently there are 588,208 Californians living with Alzheimer’s disease; by 2030 this number is expected to grow to more than 1.1 million.
Within the next two decades, the Alzheimer’s Association says the degenerative brain disease will not only pose an increased public health threat to the state, it will also disproportionately affect certain ethnic groups. Compared to whites, blacks have twice the risk of developing Alzheimer’s and Latinos have 1.5 times the risk.
African-Americans and Latinos are less likely than whites to have a timely diagnosis of their condition, resulting in less treatment, and being diagnosed at a later stage in the disease.
Edie Yau, director of diversity and inclusion for the Alzheimer’s Association of Northern California and Northern Nevada, says health conditions including high blood pressure and diabetes, both of which are risk factors for Alzheimer’s, are more common in African-Americans and Latinos than in Caucasians, and may account for some of the differences in prevalence rates.
“Alzheimer’s is often underreported and diagnosed at a later stage among people of color,” Yau says. “To address this, we’ve developed culturally appropriate health education materials that discuss the ten warning signs of Alzheimer’s, and also educate people on diet and lifestyle changes they can make to reduce their risk of developing Alzheimer’s.”
The most common form of dementia, Alzheimer’s disease is an irreversible, progressive, brain disorder that destroys memory and thinking skills, and eventually the ability to complete the simple tasks of daily living. For seniors who are diagnosed with Alzheimer’s, their decline translates into physical, emotional and economic challenges for both them and their families. Although advanced age is the biggest risk factor (the majority of patients with dementia are 65 and older), experts say that being inactive in midlife, and having diabetes and/or depression are also risk factors for cognitive decline.
Debra Cherry, executive vice president of the Alzheimer’s Association’s greater Los Angeles area, says dementia is often seen as part of the normal aging process among older African-Americans, Asian Americans and Latinos.
“You hear families talk about an older relative who is ‘senile’,” Cherry says. “This reflects the incorrect belief that serious mental decline is a normal part of getting older.”
Cherry says the cost of caring for a family member with Alzheimer’s can be exorbitant, and that much of the fees come out of the family’s pocket. Medicare doesn’t cover the costs of locked memory-care facilities that many people with Alzheimer’s need to ensure their safety, and individuals with dementia can only qualify for Medicaid once their assets have been depleted.
Yau says a report issued by the Alzheimer’s Association this month showed that the cost of caring for Alzheimer’s patients is costly not only for families, but also for states. In California, the report estimates that Medi-Cal spending on Alzheimer’s would increase from $3.1 billion this year to $4.9 billion by 2025.
In 2008, the California Legislature first addressed the impending Alzheimer’s crisis when it enacted Senate Bill 491 calling for California to develop an Alzheimer’s Disease State Action Plan for 2011-2021. Under the leadership of the state’s Alzheimer’s Disease and Related Disorders Advisory Committee, a broad-based task force was created. Working with the Alzheimer’s Association and the California Health and Human Services agency, the task force engaged more than 2,500 individuals in plan development, making special efforts to address the needs of California’s culturally diverse population.
Creating Dementia Care Networks and Communities
As part of the state’s plan, Cherry says there is an ongoing need for effective community-based models that address dementia care in racial-ethnic communities.
As an example, she cites the Los Angeles Alzheimer’s chapter’s El Portal Latino Alzheimer’s Project that brought agencies with an understanding of Alzheimer’s together with ethnic-based community agencies with expertise in cultural competence. El Portal is considered to be a national model of a successful culturally and linguistically sensitive outreach project.
“El Portal brought together a consortium of nonprofit human services providers, community representatives and government entities to create services for an underserved population,” Cherry says. “Services included Alzheimer’s outreach and education, a helpline, support groups for families, adult day care for dementia patients, and case management.”
Initially, El Portal began with a network of five adult day care centers, two legal clinics and seven support groups, and grew from there. The project’s success eventually led the chapter to create a sister program, the West Central Dementia Care Network, to serve the needs of the local African American community.
In San Francisco and Santa Clara, Ruth Gay, director of public policy for the Alzheimer’s Association for Northern California and Northern Nevada, says there is a movement towards dementia friendly communities that focus on improving inclusion and quality of life for people with Alzheimer’s.
“Many people with Alzheimer’s may be living at home, cared for by their family members, for 8-10 years,” says Gay, who was part of an Alzheimer’s/Dementia expert panel formed by former mayor Gavin Newsom to address the growing crisis in dementia care. “As a group, we looked at ways that we could improve the lives of Alzheimer’s patients and their families through easy access to a number of services and support.” San Francisco was the first city in the nation to create a 10-year plan for excellence in dementia care.
This month, Gay says the city implemented a peer escort program for patients with Alzheimer’s. The program pairs individuals with cognitive impairment with volunteers who have been trained in dementia care, and who accompany them to local senior centers on public transit to ensure their safety.
“There are other cities across the country who have created “Memory Cafes,” that serve as public meeting places for people with dementia, and who have trained police and other first responders on how to recognize signs of dementia and offer their assistance,” Gay says.
In July, the county of Santa Clara announced plans to become a dementia friendly county, and to work on creating services ranging from health and employment support to independent living and transportation.
“The County of Santa Clara Department of Aging joined with the Alzheimer’s Association and over 40 stakeholders to launch an action plan that includes increasing awareness, detection and effective care practice for residents with dementia,” Gay says. “We want to move toward forming dementia-competent communities where people of all ages and backgrounds have a common understanding of how to care for and support people with dementia and their families.”