George Reed was diagnosed with Alzheimer's disease in September 2012. A former professor of astronomy, he was angry when his doctor told him. “His intellect was his greatest strength and the core of his identity,” says his daughter Tara, who lives in Portland, OR. Reed's wife, Joan, was unprepared to care for him and relied heavily on two of their three children—Tara and a son—who lived nearby.
Less than a year after her husband was diagnosed, Joan confided in Tara that the stress was so overwhelming, she wanted to end both her life and George's. “I knew I needed to move Dad quickly into an assisted living facility to protect him and relieve my mom of day-to-day caregiving responsibilities,” says Tara, who wrote about her experience in the book What to Do Between the Tears…A Practical Guide to Dealing with a Dementia or Alzheimer's Diagnosis in the Family.
Joan is now 80 and in the moderate stage of dementia due to Alzheimer's disease. She lives in a memory care facility in North Carolina near her other daughter, Christine. The sisters agreed that it was Christine's turn to take care of their mom since Tara had cared for their dad for four years until he died in 2016. “I'll be there to support my sister like she supported me, but I can't take on the full load again,” Tara says.
Never getting a break is one of the top stressors for people who take care of loved ones with dementia, according to a 2024 report by the Alzheimer's Association. Other stressors include emotional strain, social isolation, the physical demands of caregiving, and financial insecurity. More than 11 million Americans provide unpaid care for a family member or a friend with dementia, according to the report.
“I always spend time with caregivers when they join a loved one in my office. It's important to check on how the caregiver or family member is doing both physically and mentally,” says Daniel C. Potts, MD, FAAN, a neurologist at the Tuscaloosa VA Medical Center in Alabama. “I always emphasize to caregivers that they can't give from an empty tank, so they have to find ways to get extra help.”
The toll can be enormous, says Lori La Bey, founder of Alzheimer's Speaks Radio and the Alzheimer's Speaks podcast and co-founder of Dementia Map, which offers free resources she developed after years of caring for her mother. “Caregiving can significantly impact health, often leading to depression, elevated stress levels, and burnout,” says La Bey. “Almost every caregiver experiences sadness, anxiety, loneliness, and exhaustion at some point.”
As dementia progresses and everyday tasks become more difficult for loved ones, the demands on caregivers intensify. They may have to dress and wash loved ones or help them walk or communicate. “Erratic behavior, agitation, and anger may also become significant challenges,” says Doug Scharre, MD, FAAN, director of the division of cognitive neurology at the Ohio State University Wexner Medical Center in Columbus.
Dr. Scharre and other dementia specialists offer this advice to ease the job for caregivers and loved ones alike.
Identify Signs of Impairment
Focus on and monitor the safety of loved ones, says Dr. Potts. Know when it's time to stop them from driving or using the stove or power tools. Determine whether they wander if not supervised. You may decide to remove all firearms from the house. “These are topics I talk to my patients and their families about to make sure they are thinking ahead,” says Dr. Potts.
Tara Reed had an alarm system installed in her parents' house that chimed whenever the doors opened or closed so that Joan would know when George went outside. Tara also got her dad an alert bracelet with his name and phone number in case he wandered off. Tara's brother and sister-in-law, who are firefighters, alerted the local fire department about George's dementia in case the firefighters ever had to respond to an emergency. “In Oregon, the fire department has a computer system that includes information about people and their households. That's something to explore with other local fire or emergency medical services departments around the country,” suggests Tara.
Dan Salinger, 56, made some changes to his house in Sacramento, CA, before his 92-year-old father, Ed, moved in. Dan pulled up loose carpets to prevent his dad from tripping and falling, put locks on doors to the garage and backyard, both of which involve steps, and restricted access to areas in the kitchen where his father might hurt himself.
Stay Connected
People with dementia may lose touch with reality and mix factual stories with imagined experiences. Salinger has witnessed this with his dad. “He sometimes talks about new girlfriends that don't exist or asks about his grandchildren and can't believe they are now adults,” says Salinger. “Sometimes I just let him share his stories, and other times I explain the reality to him.”
If communication becomes difficult, speak more slowly and use simpler words and sentences, says Dr. Scharre. “I also recommend speech therapy for some patients, but it's important to make sure the therapist has special training in working with people with Alzheimer's disease.”
When Susie Singer Carter took care of her mother, Norma, who had Alzheimer's disease for 16 years, Carter would test her to see if she remembered her address, believing it would help her stay healthier and delay the progression of the disease. “Looking back, I realize it likely caused my mom frustration and embarrassment,” admits Carter. “Staying in her world was much more productive and healthier for both of us.”
Carter's journey with her mom inspired her to write and produce the 2018 Oscar-nominated short film My Mom and the Girl, starring Valerie Harper. “I wanted to share a story that accurately depicted a misunderstood disease,” says Carter. “I thought it had the potential to change the perceptions about Alzheimer's by replacing stigma, denial, fear, and grief with acceptance, understanding, appreciation, and love.”
Establish a Routine
Making sure loved ones with dementia wake up, eat, brush their teeth, and go to sleep around the same time each day can help avoid confusion and add stability, says La Bey. “It's also important to serve meals in a consistent, familiar place and give loved ones enough time to eat without rushing them, because you want to encourage them to do as much as possible for themselves for as long as possible.”
Create Joy
Carter, creator and co-host of the Love Conquers Alz podcast, sought ways to make her mom laugh. As her mother's personality and communication abilities faded, Carter used music to connect with her. “My mom loved to sing. She would often burst into song, belting out show tunes on the street or in a store to anyone who would listen. Even in the advanced stages of the disease, music was our shared bond. Her cognitive reserve was strong, allowing her to remember lyrics when we played music.”
Salinger and his father connect through making TikTok videos. Like many people during the pandemic, Salinger started documenting his family's hectic life. Ed, who had moved into Salinger's house at the beginning of COVID-19, started showing up in the videos. Viewers responded enthusiastically and wanted to see more of Ed. Salinger's TikTok account (@dsalnorcal) has more than 2.1 million followers, and he attributes the following to his father.
As her mother's condition progressed, La Bey focused on nonverbal communication. “I massaged her shoulders and hands, hugged her, played music, and sat outside with her to feel the warm sun on our faces,” La Bey says. “One of my mom's favorite things was splitting an old nursery rhyme with me. I would say ‘after a while,’ and she would respond ‘crocodile.’”
Discover Hobbies
About four years ago, Mary Farquhar found an art class for her husband, Roger, 78, who was in the moderate stage of Alzheimer's disease. Although he's now in the severe stage and lives in a memory care facility in Minneapolis, Roger loved practicing drawing and painting in the class. “It didn't really carry over at home, but when he was in class, he immersed himself in his artwork,” says Mary.
In addition, Mary and Roger joined a choir. Together, they practice their parts and perform with other singers, some of whom also have dementia. “Even though his short-term memory is impaired, he can remember song lyrics. Being part of the choir makes him so happy because it encourages him to use his voice.” Due to walking difficulties, Roger now spends more time at the facility and participates less often in the choir.
Dr. Potts' father, Lester, learned watercolor painting at Caring Days adult day care in Tuscaloosa, AL, after he was diagnosed with Alzheimer's disease. He painted more than 100 watercolors before he died in 2007. Some of his artwork was featured in books, and some appeared in a show at an art gallery in Beverly Hills in 2010.
Dr. Potts' mother, Ethelda, was diagnosed with Alzheimer's disease at age 84 and died at 89 in June 2024. “My mom, who was a music teacher, was fiercely independent and liked being the boss,” says Dr. Potts. “When she transitioned to a long-term care facility, the staff asked her to lead the singing program, which helped her feel in charge.”
In 2022, Dr. Potts wrote about his experience as a caregiver in Bringing Art to Life: Reflections on Dementia and the Transforming Power of Art and Relationships. “Artistic pursuits, such as painting or music, can greatly uplift the spirit of people with dementia, even in the later stages. I never thought my dad would become an artist, but dementia can sometimes reveal hidden gifts in people.”
Read More
Five Ways to Address the Stress of Caring for Someone with Dementia
