Tackling the top stressors for dementia caregivers

Caregiving is a demanding job that you commit to out of love, loyalty, compassion, and often necessity. And when the person you're caring for has dementia, the job is especially difficult. It comes with a long list of physical, financial, logistical, and emotional challenges. Which are the most difficult, and how can you cope?

Recent findings

A 2024 Alzheimer's Association survey highlights the stressors caregivers say are most burdensome. The survey included more than 1,500 current or recent unpaid caregivers of adults ages 50 or older with cognitive problems. The top five stressors were costs, coordinating numerous doctor visits, securing doctor appointments, finding the right doctors, and getting help to take a break (respite care).

Only half of the caregivers surveyed had ever spoken with health care professionals for guidance.

Physical and emotional tolls

Caring for a person with dementia is physically and emotionally demanding. For example, you might need to help a loved one with bathing, dressing, eating, and getting in and out of a car. It takes physical strength and stamina.

Caregiving also puts you through an emotional wringer. It's common to feel frustration with the unpredictability of your loved one's behavior: one day they understand and recognize you, but the next day they don't. You might feel helpless if you don't know how to communicate with a loved one or how to cope with dementia-specific behaviors such as sundowning (meltdowns at the end of each day). You might feel anguish that they might not be getting adequate care. Above all, you probably feel grief at gradually losing the individual you once knew.

"Caregivers might also experience anger from the demands of nonstop caregiving. Then, recognizing their anger, caregivers might immediately feel guilty about resenting the loved one or having a desire to take time for themselves," says Dr. Stephanie Collier, a psychiatrist at Harvard-affiliated McLean Hospital.

The combination of stressors puts caregivers at high risk for burnout, high blood pressure, sleep problems, depression, isolation, weight changes, and even premature death.

What you can do

Resolving caregiving challenges is an ongoing process. Here are some ways to get started.

For logistical challenges: Talk to your loved one's doctors about whether you can consolidate numerous appointments on the same days or do some visits as a video or phone call.

For help finding services: Your local Area Agency on Aging can provide a free comprehensive list of services tailored to your loved one's needs and connect you to the people who provide them. The agency can also guide you to groups in your area that might help pay for services such as respite care or transportation.

Alternatively, ask your local health care system if it has a comprehensive dementia care program that provides similar help. Many systems are ramping up dementia care navigation services as a result of a new initiative from the Centers for Medicare and Medicaid Services called Guiding an Improved Dementia Experience (GUIDE). It pays providers to offer caregiver training, help lines, care navigators, and individual care plans.

You can also turn to the ARCH National Respite Network and Resource Center, a national resource program to direct you to respite services in your area.

For help coping emotionally: Join a free caregiver support group — either online, such as those offered by the Family Caregiver Alliance, or in person (if time permits) at a senior center or local hospital. Or work with a therapist online (it's covered by your own Medicare). "For example, if you feel guilty about negative emotions, a therapist might acknowledge your struggle with guilt and help you understand that perfection is impossible. You'll be guided to establish realistic goals," Dr. Collier says.

To avoid burnout: "Caregiving often requires a team, so don't feel bad asking for help from friends and family or hiring health aides at home," Dr. Collier says. "The assistance can give you a much-needed break. And taking time for yourself is not just okay, it's recommended. You need to exercise, get enough sleep, see your doctors, and take part in pleasurable activities, such as spending time with friends or reading a book. Caregiving is a marathon, with endless things to do, but you must set the priority to recharge regularly."

For more tips on coping with caregiving, check out the Harvard Special Health Report Caregiver's Handbook.

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