By Fia Curley
Uneaten meals, mounting bills, changes in personal hygiene.
When Cheryl Davis, a former nurse, received a call from her sister about their father's recent unusual behavior patterns, both daughters agreed he needed to be seen by his doctor to check for Alzheimer's disease.
After screenings proved positive, Davis said their father began medical treatments.
"He was a person who did practically everything," Davis said. "Things just stopped, slowly faded away. When Janice told me, I said, ‘No, that's not dad.'"
After their father took a bottle of bleach into the kitchen and laid it on a warm stove, the daughters decided to move him from Miami , where he was living alone, into Davis ' South Carolina home with her and her husband in the fall of 2005.
Davis ' reaction to her father's change in habits somewhat mirrors results from a survey of 655 caregivers, conducted by Harris Interactive for the Alzheimer's Foundation of America.
According to survey results released today African Americans and Hispanics are more likely to associate Alzheimer symptoms with a natural part of aging.
Seventy percent of African Americans and 67 percent of Hispanics were likely to dismiss symptoms as part of old age, compared with 53 percent of Caucasians.
"Alzheimer's disease starts out very subtle and it's easy to miss," said Dr. Warachal Faison, assistant director of the Institute for Research Minority Training on Mental Health and Aging and clinical director of the Alzheimer's Research and Clinical Programs at the Medical University of South Carolina.
"Oftentimes, family members as well as health professionals dismiss symptoms," she said, adding that insisting on a memory screening is imperative.
The AFA estimates that 10 percent of people 65 and older and half of people 85 and older have Alzheimer's. The disease is seen more frequently in minorities, affecting 10.5 percent of African Americans, 9.8 percent of Hispanics and 5.4 percent of Caucasians. Those rates are expected to triple by 2050.
Dementia is a neurological disorder that affects the ability to think, speak, reason, remember and move. While Alzheimer's disease is the most common cause of dementia, many other conditions also can cause similar symptoms. It's very important to receive a thorough medical exam for an accurate diagnosis.
Some of these disorders, such Alzheimer's, get worse with time and cannot be cured. Other types respond so well to treatment, their symptoms may even be reversed.
Alzheimer's disease is the progressive degeneration of brain cells. Over time, this results in memory loss and a person's inability to reason, learn, communicate or perform everyday activities. Symptoms can also manifest as behavior changes, such as paranoia, anxiety, agitation, aggression, depression, withdrawal or even hallucinations.
"The [family members] sometimes feel the person has gotten old and mean," said Edna Ballard, a social worker for the Duke Alzheimer's Family Support Center in Durham , N.C.
"Much of it has to do with the fact that families see this as their mom and dad getting older until some of the behaviors become so extreme that they need to seek help," Ballard said. "Usually late in the disease is when they'll go to the family doctor and find out it is disease driven."
By that time, patients may be in the later stages of the disease, needing more care and supervision than a family member is prepared to give. Questions about providing care, possible treatment and the disease itself could fall on the shoulders of a family member unexpectedly thrust into the role of caregiver.
"There's a lot of information out there to say you don't have to do this by yourself," Ballard said, adding that many are turning to the Internet for information and support.
Faison agreed, noting that "Alzheimer's disease is a family illness, so it takes everyone in the family to encourage that person to seek help."
"In order for our patients to tackle this disease they need to know their options because that's the only way they're going to make an informed decision," she said.
Attempting to provide a starting point to answer seekers is Eric J. Hall, founding CEO of the Alzheimer's Foundation of America.
"I started the foundation to specifically address the care issues of older Americans," said Hall. "I think Americans look at our elderly as being less productive and, therefore, not as important."
Hall said the survey was a way to assess the areas of need in the Alzheimer's community and see how they could be met. In many cases filing the gaps requires supplying information to doctors and religious leaders, the main people caregivers and their loved ones turn to for help, Hall said.
"Knowledge is an empowering thing," Hall said. "The more we know, the less fearful we are."
Other factors can contribute to the delay in diagnosis of about 2.5 years on average. Most notably, survey results showed that stigma on the part of the patient (33 percent) and caregiver (26 percent) plays a role when it comes to delayed diagnosis.
"There is stigma, there is fear, and those promote denial," Hall said. "Stigma is a huge stumbling block. When people are diagnosed, all they have is the image of a person in the late stages of the disease."
And although minorities may dismiss Alzheimer's symptoms as natural, the survey showed they are more likely to become caregivers who refuse to put their loved ones in a nursing home. Nineteen percent of African Americans and 21 percent of Hispanics said putting their loved ones in a facility is considered a future option compared with 32 percent of other races.
"The aging in this society—our elderly, our senior citizens—really do not enjoy the level of respect and honor that the African-American and the Hispanic show for their elders," Hall said. "The majority of them wouldn't think of sending their loved ones to a care facility."
Some of the reasons are written in the history of the black family, according to Ballard.
"You didn't always trust the information you got from the doctor," she said, "and no matter what, you don't put your family in a home."
Davis , 55, can attest to this. Currently living with lupus and fibromyalgia, the Summerville resident said regardless of what happens to her, she and her siblings have decided their father will be cared for by his children.
"I want to know he's being taken care of properly," she said. "When it comes time for him to wear a diaper, I don't want him laying there in a soaked diaper. I want to know it's done."
Having worked in a nursing home, Davis said she knows there are good workers out there, but sees the task ahead of her as a 24-hour job meant for the family.
"I know it's not going to get better," she said. "We try to tell him, ‘dad, you can't take care of yourself anymore.' It's hard for him to understand it."
Davis said her 80-year-old father, whose mother also had Alzheimer's, lived an active life after surviving colon cancer in the 1980s, exercising, watching his diet and being involved with his church.
Although her father still enjoys going to church and reading the Bible, Davis said she has had to occasionally remind her father to brush his teeth and does follow behind him—at a distance—to make sure things are in order. Although he hasn't begun wandering, Davis said that is her biggest concern because he often counts his money and asks if it's enough to buy a ticket back home to Miami .
"I tell him ‘daddy you can't go to the airport,' and he asks ‘why not?'" Davis said. "I say ‘because you have Alzheimer's,' and he says, ‘they don't know I have Alzheimer's.'"
Davis' father is one of the estimated 5 million individuals living with a disease, Hall said, that has yet to maintain public and political attention despite National Memory Screening Day in November and Quilt to Remember.
"I think Alzheimer's is very much where cancer was 10 to 12 years ago," he said. "It wasn't in the mainstream. People just weren't talking about it. I think Alzheimer's is coming of age now. We're going to get there; it's just going to take some time."
Fia Curley is a writer for the OMHRC. Comments? E-mail: firstname.lastname@example.org
Alzheimer's Disease – National Library of Medicine
Alzheimer's disease – Mayo Clinic
Dementia – National Library of Medicine
Dementia: It's not always Alzheimer's
Alzheimer's Association Support Groups
What is Alzheimer's?
Duke Family Support Program
National Institute of the Aging: Alzheimer's disease Facts