As those with Alzheimer’s move into the more advanced stages of the disease, they typically need 24-hour care, often provided by family or friends. Becoming responsible for an elder can take a tremendous toll on caregivers, both physically and emotionally.
“Caring for someone with Alzheimer’s disease negatively affects the caregivers’ health, employment, income and financial security,” notes “Generation Alzheimer’s: The Defining Disease of the Baby Boomers,” a 2011 report by the Alzheimer’s Association.
In 2009, the report says, nearly 11 million Americans provided 12.5 billion hours of unpaid care to family members and friends with Alzheimer’s. Those hours tend to start off with small duties, like making sure the elder takes his or her medication. But over time, caregivers take on more responsibility.
“It becomes a 24-hour job, in which the person needs complete care around the clock and really can’t be left alone,” says Ruth Drew, director of Family and Information Services at the national office of the Alzheimer’s Association in Chicago.
Drew points out the physical stress from sleep deprivation and the difficulty of lifting someone who needs help bathing and dressing. Even worse than the physical stressors is the emotional strain of being a caregiver: “They are watching a person they care for change day by day and lose parts of themselves, lose their ability to converse, ability to problem-solve. As we lose that person inch by inch, we grieve every loss.”
At a certain point, some families decide to search out a nursing home or extended-care facility. But this is not always the case for American Indian families.
“In Indian country, the cultural value of the elder is very, very strong,” says Carson Henderson, associate director of Two Hawk Institute, an Indian-owned and -operated corporation focused on health education, training and research in Indian country. Henderson is also an assistant professor at the University of Oklahoma Health Sciences Center College of Public Health. “There is this expectation that the elder comes first, and so do their needs in the household,” she says.
For this reason, many Native and aboriginal families prefer to keep the elder who is experiencing symptoms of dementia at home as long as possible. Dr. Kristen Jacklin, an associate professor and medical anthropologist in the Human Sciences Division at the Northern Ontario School of Medicine, explains that her research within First Nations communities in Ontario reveals many aboriginal peoples have deep-seated fear and reluctance to place elders in nursing homes.
“In every community that we’ve gone into, including urban communities, people have talked about the cultural value of family and the role of family and caregiving—caring for elders at home as much as possible,” she says. “But the people we talked to about caring for elders in the late stages of dementia said it comes to the point when help is needed. Because some family structures are not as traditional anymore, caregiving can be a very demanding role. In the very late stages of dementia, it might be necessary for the elder to go into a nursing home, but resistance and fear is expressed.”
However caregivers handle their situations, they can visit Alz.org, which has a section devoted to helping them. There is a 24/7 helpline (800-272-3900) where caregivers can get general information, just talk to someone or be assisted by master’s-level clinicians. The helpline staff are well versed in medications, treatment options, making legal or financial decisions and how to provide the best care.
Support from other caregivers can also be found online via message boards on the association’s website. After taking the Caregiver Stress Check, caregivers can learn about legal and financial issues, Medicare and Medicaid programs, take an interactive tour of the brain to see how the disease progresses and learn how to be a healthy caregiver.
Drew says one of the best ways the association helps caregivers is by preparing them. That can include teaching them the warning signs; an information sheet detailing 10 major warning signs has been translated into Muscogee (Creek). “I think it’s important to have a sense of what’s coming, to know what is involved in caregiving and to assemble a team of people who can help you and know where to turn when you do need help,” Drew says.
She suggests planning during the early stages of the disease, so the elder can have a voice. “When people don’t have those things worked out, they get into crisis situations. While having a plan won’t make the task of being a caregiver easier, it can alleviate some of the stress and anxiety that comes with the job.”
And she concludes, “There is no underestimating how big the impact of Alzheimer’s disease is on an individual and on a family. So anything we can do at the Alzheimer’s Association to support these individuals and their family members who care for them is crucial.”