Alzheimer's is a family disease. The individual diagnosed with Alzheimer's will, over time, lose cognitive function, the ability to perform even the simplest tasks and may develop behavioral habits that are inconsistent with their normal personality. The progression of this disease not only alters the life of the person diagnosed but also significantly impacts the immediate family. The family members then take on the role of caregivers, and it becomes a 24-hour-a-day job. The primary caregiver, usually a spouse or a child, experiences increased stress levels, financial burdens and the need to cope with the steady and accelerated "loss" of a loved one.
"As devastating as an Alzheimer's diagnosis is for the individual, the caregiver and family members share in the diagnosis," says Marianne Call, a registered nurse with the East Jefferson General Hospital Geriatric Behavioral Group. "Taking care of someone with Alzheimer's is a responsibility most are not ready for. Without help and support, that caregiver will mentally, and oftentimes even physically, break down trying to keep up."
Alzheimer's is a form of dementia that affects more than 5 million people in this country. It is a brain disorder that slowly destroys one's ability to remember or retain learned knowledge and communicate rationally. They can even have hallucinations that lead to confusion, anger and mistrust of the people around them. The speed at which the disease progresses hinges on the amount of damage to the brain, and the rapidity varies from person to person.
The early stages of Alzheimer's may require limited intervention by the caregiver to help the patient with daily functions and activities. But as it moves into the later stages, the caregiver will need to take over more and more as the patient loses his abilities. Ultimately, the caregiver may need to do everything for them: feed, bathe, dress and take them to the bathroom. It becomes life-altering as the person with Alzheimer's cannot safely be left alone.
"The Alzheimer's patient becomes like a child again," says Call. "They cannot be left alone and they become harder to care for. We find that when the caregiver brings them to a day facility such as our Adult Day Health Center, it gives [the caregiver] the opportunity to go to work, run errands or even just to have some alone time, knowing that their loved one is being taken care of."
Aside from the constant time it takes to care for someone with Alzheimer's, the emotional strain of seeing a loved one slowly lose the ability to function is extremely difficult to deal with, especially when it is your spouse or parent who doesn't recognize or comprehend who you are. Even more troubling may be the changing of roles in the relationship. The child, now an adult, has to assume the parenting responsibilities for their mother or father. Many caregivers are not able to adjust to that role easily. The end result for most caregivers is usually increased anger, depression, social withdrawal and health problems of their own.
"The most important piece of advice I have for the caregivers is simply to ask for help," says Call. "No one could or should have to do this by themselves. There are day facilities, support groups and other family members that can be there to help manage the situation. Pace yourself, and no matter what, find a healthy outlet to give yourself a break."
Call also advises caregivers to find a physician they're comfortable with, for both them and the person with Alzheimer's. In the beginning, she says, caregivers are often in denial over the initial diagnosis, and it is important to have a trusting relationship with the physician administering care to help advise you along the way.