The hardest job: Helpful tips for dementia caregivers
Caring for a loved one with dementia is a job nobody would choose. But with more than 5 million Americans living with Alzheimer’s disease, it’s a reality for many families.
In honor of Family Caregiving Month, Zaldy S. Tan, MD, the medical director of the UCLA Alzheimer's and Dementia Care Program and assistant dean for curricular affairs at David Geffen School of Medicine at UCLA, shared his best advice for people providing care to loved ones with dementia.
Be gentle with yourself…
“No one is good at this,” says Dr. Tan. Whatever your education or life experiences, nobody starts out an excellent caregiver. “Caregiving for a person with dementia is quite different from any of the other things you’ve experienced,” Tan says. “You shouldn’t feel bad if you need help or other resources.”
…and with your loved one.
It can be frustrating to care for a person who repeats the same questions or says unkind and inappropriate things. Caregivers often wrongly believe that the person with dementia just isn’t putting in enough effort. “But it’s the disease, not the person,” Tan says. “They’re not doing it to spite you or make things more difficult. Getting irritated or speaking loudly [at them] isn’t going to improve their memory.”
Trust your instincts.
If you are caring for someone with dementia, chances are you interact with a lot of healthcare professionals. But you’re an expert, too. “Each person with dementia is unique in his or her personality, behaviors and needs,” Tan says. “As a caregiver, you’re in the best position to let the healthcare team know who that person is. You know more than you think.” The more the doctors understand, the better treatment your loved one will receive.
Take care of yourself.
Studies show that caregivers of people with dementia are more likely to have poor health themselves. It’s important to take care of your own physical and emotional needs. “Time spent getting respite, attending support groups or finding resources to help you will also help your loved one down the line,” Tan says. “It’s not selfish to take time for yourself. That’s part of what will allow you to be a caregiver for the long haul.”
Have a plan B.
“A lot of caregivers think they’re superheroes, but they are human,” Tan says. He says all caregivers should have a backup plan in place in case they get sick or injured or other aspects of life demand their attention. If something happened to you today, who would care for your loved one? “If the answer is ‘nobody,’ it’s a sure sign of a problem,” he says. Reach out to adult children, siblings, close friends or community members.
Caregiving can feel lonely, but many people have walked in those shoes. Lean on friends and family members for support, or consider joining a support group, Tan suggests. “Often they’re just waiting to help.”
Tap into resources.
There are many resources available to help you navigate the caregiving waters. For a good place to start, check out our caregiver education series, which offers free webinars on a wide variety of topics related to dementia.