Caring for the Caregiver: Part 1 by Dr. Brent Forester

Guest Blogger: Dr. Brent P. Forester, MSc., Geriatric Psychiatrist

Dr. Brent Forester has stepped into a new role as the chair of Psychiatry at Tufts University School of Medicine and Tufts Medical Center. He’s also leading the effort to build a detailed memory care center for Tufts Medicine, aiming to better serve people living with memory loss. A big part of this mission is making sure non-specialist clinicians get the right training and education to support families facing Alzheimer’s and dementia.

Dr. Forester has also teamed up with Tom Harrison to write a book called “The Complete Family Guide to Dementia: Everything You Need to Know to Help Your Parent and Yourself.” This guide is meant to offer practical advice and comfort to families-especially adult children-caring for loved ones with dementia.

Caring for the Caregiver: Part I

Let’s look at Mrs. Smith’s story. She cared for her husband of 59 years after he was diagnosed with Alzheimer’s disease. Mr. Smith, a World War II veteran, built a life for his family through hard work in the automotive industry. As his memory and ability to manage daily tasks faded, Mrs. Smith noticed things weren’t right-he got lost driving home from their daughter’s house and struggled to remember friends’ names.

At first, she felt frustrated and tried to handle everything herself, refusing help even as the demands of caregiving took a toll on her health. She lost weight, slept poorly, and ignored her own medical needs. Efforts from her doctor and her children to get her support didn’t work-she kept turning down offers of help. One day, her daughter found her in distress at home; Mrs. Smith was rushed to the hospital with a heart attack, and Mr. Smith had to move in with their daughter.

This story shows how tough caregiving can be. The physical and emotional strain is real, and it can seriously affect the caregiver’s health. When I meet with spouses caring for loved ones with dementia, I often remind them that their own well-being is just as important as the person they’re caring for. I encourage them to reach out for help, use community resources, and lean on their families. I’ll ask: “If you get sick, who will take care of your loved one?”

Many of you reading this know firsthand what it’s like to shape your days around someone who once was full of life but now needs help with even the basics. The term “caregiver burden” covers the emotional, social, and physical weight that comes with this responsibility. Studies show that caregiver stress can lead to health problems and depression-nearly half of all primary caregivers for someone with Alzheimer’s experience depression. This stress doesn’t just affect the caregiver; it can also make things harder for the person with dementia. If a caregiver is anxious or upset, their loved one will sense it, even if they can’t remember names or relationships. Strong emotions can lead to more agitation and confusion.

Too often, support for caregivers goes unnoticed by families and even doctors. Next month, I’ll talk about the strong evidence showing that supporting caregivers helps both them and their loved ones. In the meantime, PBS is airing a moving documentary called “The Genius of Marian.” Filmmaker Banker White tells the story of his mother’s struggle with Alzheimer’s and the impact on their family, especially her husband, who became her main caregiver. You can learn more about the film at geniusofmarian.com.

As the website says, “The Genius of Marian” offers an intimate look at the heartbreak of Alzheimer’s, the role of art, and the meaning of family. The film follows Pam White in the early stages of Alzheimer’s as her son documents her efforts to hold on to her sense of self. I encourage you to watch the film and see how this family faces the challenges of caregiving and memory loss together.