Supporting Dementia Caregivers

Caring for a person with dementia brings challenges for the caregiving family members. For clinicians who treat patients with dementia, ensuring those caregivers are healthy and supported is essential, says Louis J. Marino, Jr., MD, chief of medical staff and medical director of geriatric services at Sheppard Pratt.

“Part of the clinician’s job is to incorporate the topic of caregiver well-being into routine visits with patients and their caregivers,” Dr. Marino says. Here, he shares his best practices to support the caregivers of dementia patients.

Educate patients and caregivers

Dr. Marino recommends educating newly diagnosed patients and their support systems on what to expect with dementia—both burdens and opportunities.

“Patients with Alzheimer’s disease rarely look exactly like the image people carry in their heads,” he says. “So most people find themselves surprised by the care and supervision of an individual with dementia.”

Clinicians should refer patients and their families to local and national resources, support groups, and assistance programs, including the Family Caregiver Alliance and the Alzheimer’s Association.

Be proactive

Speak to caregivers about the importance of self-care. Encourage caregivers to maintain self-care activities such as regular physical activity, adequate sleep, good nutrition, and engaging with their support network. Be on the lookout for signs of anxiety, depression, or social withdrawal. 

Take an individualized approach

There is no one-size-fits-all approach to caregiving or caregiver support. “Each case is an individual one,” he says. 

One consideration to bear in mind is the family members’ relationship before diagnosis. 

“When a caregiver feels close to the patient, they are experiencing a painful loss. When that relationship is ambivalent or strained, it can have its own challenges with conflict and unresolved hostility,” Dr. Marino says. 

Encourage open communication

Because speaking with patients and caregivers about dementia can be uncomfortable, Dr. Marino recommends having a frank but supportive conversation. “A patient often goes into the appointment fearing they’re an imposition, so a discussion about how the caregiver’s burden can be lightened is potentially very welcome,” he adds. “The provider has a unique opportunity to allay some of their anxiety and initiate a positive discussion.” 

Look for silver linings  

While acknowledging the challenges of caring for a person with dementia, Dr. Marino says providers should help caregivers maintain a sense of humor and find positive aspects of the situation. “Caregiving can be an enormous opportunity for personal growth, give someone a sense of purpose and accomplishment, and set a positive example for the younger generation.

“There’s no getting past the burden of dementia,” he says. “But, as providers, we can help caregivers recognize that they’re doing important and meaningful work.”