As a caregiver of someone with dementia, you may find yourself prone to anxiety and depression. “Family caregivers typically have mild to moderate symptoms of both of these conditions without meeting the formal criteria for having a disorder,” explains Gary Epstein-Lubow, MD, attending psychiatrist and the assistant unit chief of Butler Hospital’s inpatient geriatric specialty care unit.
There is also concern that feeling burdened – wanting to help but being limited by what you can physically do – may result in a feeling over pressured. If the burden persists, it can increase the risk of becoming depressed and, in fact, about one-third of family caregivers will experience major depression at some point.
Stress, stress, and more stress
Every part of a dementia patient’s journey can be stressful for a caregiver.
“Many times people in the early stages of dementia don’t realize that there is a problem,” Dr. Epstein-Lubow says. “A son, daughter, or spouse may notice a change before someone realizes that they’re having trouble.” For example, they may forget how to balance a checkbook or repeat things.
“The conflict between what the family sees and what the patient believes can be a source of argument,” he continues. “That is an early stressor.”
As a family member wanting to know what’s wrong, you may find yourself arguing with the person because he or she refuses to see a doctor, thinking nothing is wrong.
The stress continues with a diagnosis and as demands mount on the caregiver as the patient needs new kinds of help. Caregivers will have more responsibilities – assuming tasks the patient used do to, taking the patient to doctor’s appointments, and keeping him or her active.
Another stressor may be the loss itself as caregivers may mourn the loss of a relationship. “You may wish you could find help to reverse the symptoms of the illness, but there currently aren’t any great treatments,” he says.
In the later stages of the disease, when the person may have trouble recognizing family members, the caregiver may feel that they have lost the person they love. “Although they are not the same, the person is still alive,” Dr. Epstein-Lubow says. “It’s a different mourning process compared to someone with cancer. You can experience the grief with that person.”
If you find yourself stressed as a caregiver, Dr. Epstein-Lubow advises talking to other people in the same situation. Seek out support groups and information. The Alzheimer’s Association offers educational programs for patients and families. “It’s like going to class – you learn all about dementia,” he says.
He also advises caregivers to identify a doctor, nurse, or social worker as a point person to go to first with questions. “In caregiver support studies, this is a highly important factor for stress reduction,” Dr. Epstein-Lubow says. “It can be cumbersome to keep repeating the scenario to different doctors.”
Planning ahead can help, too. Determine what it will take to keep someone living at home and when it will become too much. What will be the next step – a nursing home or moving into someone else’s house? “Making this decision early will reduce worry and stress when the time comes,” he says.
Have an emergency plan, too. “The likelihood of something unexpected happening increases when someone has dementia,” Dr. Epstein-Lubow says. “Know who to call if you suddenly have to go to the hospital.”