A cultural study of Alzheimer's disease

A cultural study of Alzheimer's disease
By Tawnya Creager, Community Outreach Director for Easter Seals Adult Day Services

A recently released 2010 Alzheimer's disease Facts & Figures report states that African-Americans are twice as likely and Hispanics are 1.5 times as likely as whites to develop Alzheimer's disease. While these statistics maybe surprising to some, research can only guess at the reasons why; the report also notes that..."African-Americans and Hispanics are...less likely than whites to have a formal diagnosis of their condition." National data demonstrates whites report that a doctor has told them they have a "memory-related disease" (45 percent of whites with Alzheimer's or other dementias compared with 33 percent of African-Americans and 34 percent of Hispanics with these conditions). For those that are formally diagnosed they contribute to the 5.3 million Americans that are counted with this disease.
Cultural basis results in minority families feeling obligated for the personal care of their aging loved ones and usually the extended family will live together in one home. There are very strong cultural taboos against nursing home placement or assisted living, Dolores Gallagher-Thompson, director of the Stanford Geriatric Education Center, said in a CNN.com interview. "You have to keep the person at home, no matter how hard it is to take care of them."
Ms. Gallagher-Thompson also states that some families ignore the symptoms, such as behavioral changes and memory loss because their culture respects the elderly so much that they try to conceal their flaws. Those like Beatriz Terrazas, who live near Dallas, TX cares for her mother who has Alzheimer's disease. My family is still very Mexican at heart, she wrote in her blog, My Mother's Brain. Putting her mother in a nursing home, "...would feel like giving up part of my cultural and family history."
Minorities typically get don't early treatment, when medications are more likely to be effective and when patients are more capable of making future plans. At doctor's offices, some can encounter language barriers and difficulties navigating a complicated healthcare system. Many are uninsured and have annual incomes less than $10,000. Since Alzheimer's diagnoses is increasing at a rapid rate nationwide and industry experts predict that senior living providers will continue to keep pace with the care needs of seniors with dementia. These latest findings suggest that professional care providers will have the added and increased challenge of serving minority seniors and their families.
Additional highlights from the 2010 Alzheimer's disease Facts & Figures report include:
* Delays in diagnosing Alzheimer's means they are not getting treatment in the earlier stages of the disease, when the available treatments are more likely to be effective. This also means they're less likely to make legal, financial, and treatment plans while they are still capable.
* There are 5.3 million Americans living with Alzheimer's and every 70 seconds someone in America develops the disease. By mid-century someone will develop Alzheimer's every 33 seconds.
* In 2010, there will be a half million new cases of Alzheimer's and there will be more new cases in each subsequent year. In 2050, there will be nearly a million new cases.
* Alzheimer's disease is the 7th leading cause of death in the United States in 2006. It is the 5th leading cause of death for those aged 65 and older.
* In the United States alone there are 10.9 million unpaid caregivers.
* Better management of high blood pressure and diabetes could help reduce the prevalence of Alzheimer's and other dementias, especially if treatment begins when individuals are in midlife.
* High blood pressure and diabetes are more common in African-Americans than whites and diabetes is more common in Hispanics than in whites, effective treatment for these potentially modifiable conditions could benefit these groups greatly.
* The presence of high blood pressure, heart disease, diabetes and stroke, all are part of a consistent relationship for known risk factors for Alzheimer's disease.
In Mexico, the extended family usually lives in the same neighborhood. When an elderly member becomes ill, the entire family - aunts, uncles, brothers, sisters, cousins - pitches in to take care of the "afflicted," Beatriz Terrazas said. However, the Terrazas' extended family members are scattered across Mexico and the United States, making home care more of an individual responsibility rather than that of an extended family. In addition to their cultural beliefs, they can't afford an upscale facility and worry that ones covered by Medicaid will not meet their standards.
The stress of caregiving is enormous, as many family members (often called "the sandwich generation') work full-time and raise their own children. "They feel that they are being traitors," said Betty Marquez, an owner of New Horizons Adult Day Care, an El Paso center for the elderly that has many Hispanic clients. Marquez said the families feel as if they are letting down their parents when they leave family members at the day care facility. African-American families much like Hispanic Americans have a strong sense of filial obligation and intergenerational ties.
The demands of caregiving aren't easy. In the 2009 NAC/AARP survey on caregiving in the United States found that 30 percent of family and other unpaid caregivers of people with Alzheimer's and other dementias had children or grandchildren under age 18 living at home. While 9 percent of all caregivers live approximately 2 hours away from the person for whom they provide care. Depending on the definition of "long distance" these numbers indicate that there are an estimated 981,000 to 1.6 million long distance caregivers for individuals who have Alzheimer's disease or another related dementia.
Francisca Terrazas stares blankly most of the time at her eldest daughter and asks who she is. "I'd give anything to have one more day to ask her advice, share a family story that she no longer remembers and to have a good laugh or cry over it," Beatriz Terrazas said. "Every once in a while, she'll remember something out of thin air. Once in a while synapses are firing and then they're gone again."
If you would like to read more on the 2010 Alzheimer's report or on any other information used in this article visit: http://www.alz.org/alzheimers_disease_facts_figures.asp or www.cnn.com article: Minorities Struggle with Dementia.