More than 50,000 people in San Diego County have dementia, a disease marked by serious cognitive impairment, significant memory loss, confusion, and behavioral changes. Alzheimer’s disease, the most common form of dementia, affects 5.2 million Americans, most of whom are age 65 and older. As our population ages, the prevalence will dramatically increase. According to the Alzheimer’s Association, the number of people age 65 and older with Alzheimer’s may nearly triple by 2050.
Scripps neurologist and Alzheimer’s expert Michael Lobatz, MD, explains how Alzheimer’s affects people living with the disease as well as those who care for them.
In its early stages, Alzheimer’s may have very mild effects. For example, the person might easily forget recently learned information or be unable to drive to a place that is very familiar. “Because Alzheimer’s is a degenerative disease, the damage becomes markedly worse over time,” says Dr. Lobatz. “It disrupts the brain’s ‘executive function’ that allows us to make and remember a plan, execute it, check our work, and have appropriate filters in place for interpreting new information,” he says. At this stage, it may be difficult to complete normal cognitive tasks such as paying bills or managing a schedule.
Eventually, Alzheimer’s robs people of their ability to perform basic activities of day-to-day living, and caregivers become necessary to ensure that patients are eating properly, caring for their personal hygiene and not endangering themselves.
Unless the family can employ a professional caregiver, the responsibilities often go to the spouse, children, other family members and friends — who are already likely caring for their own families, working, and tending to their own needs. “Caring for a person with dementia means not only physically helping with their daily needs, but often handling financial and legal matters such as wills, advance directives and medical costs,” says Dr. Lobatz. “For caregivers who are very close to the patient, the process of losing a lifelong companion to this disorder where they eventually won’t recognize their spouse or friends is so profoundly sad.”
On average, Alzheimer’s progresses over a period of nine or ten years from onset to severe disability and death. Some cases will advance much more quickly, while others may go on for more than 15 years. For caregivers, the responsibilities can last many years. To make matters worse, many caregivers often feel helpless, especially if they are trying to take on the responsibilities alone.
If the stress of caring for a loved one with Alzheimer’s ultimately makes the caregiver sick, both caregiver and patient suffer. The patient will typically struggle, and may have to be placed in a full-time care facility.
“Whenever I treat patients with Alzheimer’s, I automatically consider their spouses or caregivers to be my patients as well,” says Dr. Lobatz. “I ask how they are doing and what kind of help they need to make their roles easier.”
When caregivers learn to effectively manage stress, both they and their patients benefit. “When we do research on Alzheimer’s, one of the measurements we use to determine how well treatments are helping is the stress level of the caregiver,” Dr. Lobatz explains. “If treatments are successful, caregiver stress tends to be lower, and both patient and caregiver do better.”
Caregivers need a lot of help, but they may not be aware of the many valuable resources available to them. Community organizations and hospitals can often help caregivers learn the skills and knowledge needed to help someone with Alzheimer’s, find in-home and day care services, obtain specialized medical care and get legal assistance.
“In addition to caring for their patients, it is vital for caregivers to take care of their own health,” says Dr. Lobatz. “They need to eat well, exercise, get enough sleep, and be able to take breaks from their responsibilities and enjoy personal time. Finding the resources they need to get help can make it easier to care for themselves.”