Nearly 100,000 people in San Diego County have dementia, a general term for a group of symptoms that include cognitive impairment, memory loss, confusion, and behavioral changes. Alzheimer’s disease is the most common type of dementia and unfortunately gets worse with time. Caregiving becomes more significant as the disease progresses.
Spouses, children, other family members and friends often take on the responsibilities for caring for someone with Alzheimer’s and related dementias. Support for caregivers is important because of the challenges they face.
“Caring for a loved one with Alzheimer’s disease is a labor of love but it can be overwhelming. COVID-19 has added new challenges, but these too can be overcome with greater caution, self-care and support,” says Gregory Sahagian, MD, a neurologist at Scripps.
Dr. Sahagian explains who is at risk and the symptoms of dementia, the challenges caregivers face and healthy ways to cope and seek additional help.
Dementia is not a specific disease, but a group of conditions caused by abnormal brain changes. Symptoms range from mild to severe cases and are marked by loss of mental functioning and behavioral abilities.
More than five million people have Alzheimer’s disease and related dementias in the United States with most of those affected 65 and older. The numbers continue to grow.
In its early stages, Alzheimer’s may have very mild effects. A person might easily forget recently learned information or be unable to drive to a very familiar place. At this stage, it may also be difficult to complete normal cognitive tasks, such as paying bills or managing a schedule.
“Because Alzheimer’s is a degenerative disease, the damage becomes markedly worse over time,” says Dr. Sahagian. “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.”
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. Sahagian. “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.
A person with dementia may be at higher risk for complications from COVID-19 for a variety of reasons. Because Alzheimer's and related dementias mainly affect older adults, many people with dementia are at greater at risk of complications from the coronavirus. People with dementia also often have other medical conditions, which further increases their risk of severe outcomes from the virus.
The Centers for Disease Control and Prevention (CDC) provides COVID-19 safety guidelines for dementia caregivers to follow, including self-care and when to seek medical help for the person they’re caring for.
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. Sahagian. “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. Sahagian 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 may not always 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 dementia, 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. Sahagian. “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.”
A good place to start is with the Alzheimer’s Association’s Caregiver Center or call the 24-hour helpline at 1-800-272-3900.
Closer to home, Alzheimer’s San Diego provides help and support to people living with dementia and their caregivers.