Living With Joy: How Patients and Caregivers Can Proactively Approach an Alzheimer’s Diagnosis

When considering important changes in lifestyle, one of the best things to do is get moving. “Exercise can override some of the toxic proteins in the brain,” explains Granholm-Bentley. The Alzheimer’s Association reports that some studies have shown that exercise may reduce Alzheimer’s risk and possibly slow cognitive decline, but more research is needed. Diet and getting seven to eight hours of sleep are also critical because during sleep, the brain builds up “good proteins” that help the body resist and fight disease. The right mindset is another important weapon in the battle against Alzheimer’s disease. “Rebecca is doing everything she can,” says Granholm-Bentley. “She lives healthy, but she also lives with hope. We should never discount the power of optimism.”

One of the early changes Chopp and Thibodeau made was to get a puppy, Budhy. The new family addition created the need for a routine along with getting regular walks. It also connected Chopp and her husband to the greater community of dog walkers and owners, combating the isolation and loneliness that often accompanies Alzheimer’s patients and their caregivers. 

“People with mild dementia, especially those who have quit their jobs, may feel as if their friends don’t know how to talk to them,” advises Granholm-Bentley. “A dog is not only something to care for, it can be a portal to human communication.”

She points out that there are also dogs trained to work with Alzheimer’s patients, for example helping locate them if they walk away or leave the house, call 911 and provide emotional support as well as retrieve objects and provide balance support. Getting a dog is not a magical fix for loneliness, so before jumping in make sure all family members are ready for the commitment.

Avoid quick decisions after diagnosis

After the diagnosis, the couple decided to sell their large apartment in downtown Denver, where they had done so much entertaining for her job. They moved into a small apartment in a facility with access to step-down care, but neither was happy. We panicked, Chopp admits. “The senior living facility wasn’t quite right for us, and so we tried to be thoughtful about what we needed next. We ultimately found a home in an over-55 community that better suited our needs and provided community.” 

This experience formed the basis for one of her pieces of advice: Postdiagnosis, “don’t make knee-jerk decisions.” Being in her own home gave Chopp room to write, paint and read. The couple was also able to move closer to her son and daughter-in-law and to the mountain hiking trails she loved.

Rebecca Chopp began to paint at the onset of her diagnosis as art-based therapies may help to slow cognitive deterioration.

Joanna Kulesza for The Washington Post via Getty Images

Try something new

Chopp had never been an artist; in fact, she admits she had a fear of failure when it came to those kinds of creative projects. After a friend insisted she teach her how to paint, Chopp began taking classes and found that she loved it. The more she practices, the more she has enjoyed watching her ability improve. “Think about a creative activity that might scare you,” says Chopp. “Don’t worry about the outcome — drawing, painting, cooking, dancing — focus simply on finding joy in the process.”

Adds Granholm-Bentley: “Creative projects, especially new activities, are known to improve brain function as well, since they will engage the entire brain in the process.”

The brain/inflammation connection

What we put in our bodies is essential for so many aspects of good health, especially brain health, and we hear various theories about one diet over another. One thing there is little debate about: Processed foods are not good for our health and can lead to inflammation in the body. 

“Every bite you eat is brain draining, or brain feeding,” says Chopp, who follows the MIND diet (Mediterranean-DASH Intervention for Neurodegenerative Delay Diet), which is a combination of the Mediterranean and DASH diet, designed to fight hypertension by avoiding carbohydrates and sodium. “Avoid processed foods and sugar,” cautions Chopp, “which [make up] so much of the American diet.” The foods she chooses include those rich in certain fats that keep neurons flexible, as well as antioxidants and proteins. She cooks with olive oil, eats a lot of lean chicken and turkey and whole leafy grains, and allows herself a little ice cream every now and then, one of her favorite guilty pleasures.

As scientists learn more about the role of inflammation in the body, research indicates that brain inflammation can contribute to the progression of Alzheimer’s disease. Inflammation can be triggered or exacerbated by stress, disease, poor diet, lack of fitness and environmental factors, such as pesticides and food additives. Chronic autoimmune diseases, such as rheumatoid arthritis, are also known to spark neuro-inflammation in the brain. Learning that exercise can keep inflammation at bay and improve focus, Chopp became more intentional about hiking, enjoying the chance to be outdoors in the natural beauty of Colorado’s mountains.

Fighting back with spirituality and joy

Ralph Patrick, 62, former regional director of The Colorado Chapter of the Alzheimer’s Assocation, is a dementia consultant and spiritual director. Patrick has engaged with caregivers and people living with dementia professionally for over 30 years and cared for his mother through her Alzheimer’s journey. He met Chopp at an Alzheimer’s walk, and they connected around the issue of faith.

As a religion professor, Chopp understood how spiritual resources and the concept of awe — being in the presence of something vast that transcends your understanding of the world — can help people experience peace, joy and connectedness. Science is also demonstrating how experiencing awe can actually reduce inflammation in the brain, too.

Rebecca Chopp, pictured at home with her husband, Fred Thibodeau, was advised by a doctor to “live with joy.”

Joanna Kulesza for The Washington Post via Getty Images

Remove the caregiver guilt

Patrick’s experience with his mom gave him insight into the crucial need for caregiver support. “A dementia diagnosis is devastating and can result in isolation,” he says. “It is not uncommon for family and friends to pull away.” Making things extra hard is caregiving-related guilt. Caregivers may make promises to loved ones, such as “I’ll never do that, I’ll never put you in a home,” and many of us may end up breaking that promise,” Patrick says. Guilt makes the disease even more devastating. 

What seems to matter most for caregivers and people living with dementia is to have someone empathize and listen, says Patrick. “What people need on this journey is to have others walk with them, and to continue to love and support them.” 

Patrick also stresses that caregivers should not be afraid or ashamed to ask for help. “I encourage caregivers to make a short list of three things they absolutely need, whether that be meeting a friend for coffee, going to bridge club or simply having some alone time, and then to share that with others who want to help,” he says. “That gives caregivers a concrete idea of how someone can help.”

“This is a marathon,” says Patrick. “When you run one in life, you don’t wait for mile 20 to hydrate, you start right away.” The same is true with this diagnosis, and it’s clear that getting good advice and creating an action plan for the patient and caregiver helps families remain healthy and live with joy. “Caregivers need to not be afraid to ask for help, and it’s what they are reticent to do.… Either you will get the help you need or you will find out who your friends are.” Plus, he adds, “People with dementia do amazing and inexplicable things — you can be a soul friend to somebody.”