Finding a New Path With Dementia

On a recent morning in Washington, D.C., Mary Radnofsky throws a bright yellow apron over her head, ties it around her waist and breaks into a smile. The 59-year-old is happily anticipating the start of her shift as an occasional volunteer at a downtown museum, where she supervises children eagerly exploring a hands-on invention lab. On other days, when she feels up to it, she visits art museums or chats with neighbors and fellow pet owners as she walks her dog. “I’m enjoying my life,” she says.

Radnofsky was diagnosed with dementia five years ago, but she hardly fits the stereotypical image of someone living with the disease. Instead, she typifies a recent movement to change the way people view and treat dementia. People with the diagnosis can defy its negative stereotypes and still find meaning and purpose in their lives, the movement asserts—a message supported by a growing number of people with dementia, their care partners, and clinicians and health professionals who specialize in dementia care.

Dementia is an umbrella term for a range of neurological disorders, with symptoms such as a loss of memory skills and thinking abilities and changes in behavior that interfere with a person’s everyday functioning. There are many different types of dementia, including Alzheimer’s disease, vascular dementia and Lewy body dementia. Hearing the word dementia likely conjures up images of people in the final stages, as sufferers curled up on a bed, unable to speak or to recognize loved ones. There is no cure yet, although research continues. Nearly 6 million Americans live with dementia, and diagnoses are expected to spike as the population ages.

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But as the first wave of baby boomers begins to be affected by dementia, perceptions of the disease are gradually beginning to change. Some with early symptoms are speaking out, hoping to counter dementia’s stigma and to pursue a higher quality of life as they confront the disease. Advocates are pushing for more life-enhancing kinds of care, such as tools and resources for people recently diagnosed to help make the best of their remaining strengths.

It doesn’t mean that living with dementia can suddenly become easier, or that there’s a simple fix to the challenges a diagnosis presents. But the goal is to flip the script and stop defining people with dementia only as sufferers who are dying from it. “This concept is just taking off,” says Katie Maslow, a visiting scholar at the Gerontological Society of America and an expert in improving dementia care and supporting caregivers. “It’s so different from where we’ve been. We’re talking about living well with dementia, as opposed to focusing only on all the bad things that are about to happen.”

The movement resembles the way a cancer diagnosis evolved from fear of even mentioning the “C word” a few decades ago to advocacy and support. Take away the stigma of dementia, the thinking goes, and you can push for people with possible symptoms to seek an early diagnosis and gain the ability to plan what they want for the rest of their lives. Contrary to stereotypes, dementia symptoms usually develop gradually over time, and symptoms vary greatly from person to person, with many stages along the way where someone diagnosed with it can still learn new things, contribute to society and remain part of a larger community. Even people with advanced symptoms retain some long-term memories and experience joy. Some in the dementia community are speaking at public events and in the media about their experiences, and they are using blogs, videos and podcasts to share their stories.

“Just because you get the diagnosis doesn’t mean your life is over,” says Pam Montana, of Danville, Calif., who was diagnosed with early onset Alzheimer’s in 2016, at age 61. “A lot of folks don’t know how to respond. Initially, of course, it’s devastating. But I have a lot of life left in me. I want to stay engaged.”

Seek Out Support for Dementia

If you or your loved one is diagnosed with dementia, one of the first steps to take is to look for support. Dementia Mentors is a volunteer organization that matches people living with dementia with mentors on a one-on-one basis. Its website includes videos of people with dementia offering tips on preserving memories in a journal, organizing medications and shopping. Radnofsky regularly participates in its virtual peer-group sessions. Finding others dealing with dementia “took the stress out of being in the closet” about her diagnosis, Radnofsky says.

The Dementia Action Alliance, an advocacy and education nonprofit group, has a Resources Center (click on “Resources”). It includes a two-page list of dementia-related blogs, Facebook groups and websites. A “living beyond dementia” video features people talking about their experiences after being diagnosed.

As part of the movement to shift perceptions of the disease, the language around dementia is changing. More people diagnosed with it are describing themselves as “persons living with dementia,” instead of as sufferers or victims. Advocates and an increasing number of health professionals also use the term care partner, instead of caregiver, to more accurately describe a two-way relationship. Here’s where to go for more on language guidelines.

Talk to your spouse or care partner early on about your preferences as your disease progresses. “It’s a very sensitive, emotional topic,” Montana says. “But you need to have that communication as soon as you get the diagnosis.”

Do you want to be reminded that you don’t recognize someone you should know, or that you’re repeating yourself? Montana told her husband not to always point out her lapses because it will only make her feel sad that her symptoms are progressing. The Alzheimer’s Association has more tips on what to do after a diagnosis.

After a dementia diagnosis, people need time to grieve, but getting active as soon as possible can help. There aren’t any drugs yet to halt dementia’s progression, but ongoing studies are showing some early promise that cognitive stimulation, exercise and social activity may have an effect.

And there’s no downside to staying engaged. “Even if you’re diagnosed with dementia, living well is still in your hands, in terms of taking care of yourself and finding ways to enjoy life,” says Helen Kales, a geriatric psychiatrist and director of the Program for Positive Aging at the University of Michigan. Kales recalls one couple that took up square dancing, combining a physical activity with socializing and using cognitive skills such as learning new steps. Radnofsky got a medical alert service dog that she walks every day, helping her stick to a schedule.

Challenge yourself and try to learn things you’ve always wanted to do. Mike Belleville, 57, has Lewy body dementia. After his diagnosis five years ago, he joined an Alzheimer’s Association local support group in Watertown, Mass. He taught himself to use video-editing software, and he helps produce a podcast for Dementia Action Alliance called “This Dementia Life,” where people diagnosed with the disease and their care partners talk about their lives.

Belleville always loved to cook, but he started having trouble reading recipes. So he uses videos he finds online to try out new dishes. And he took up watercolor painting for the first time. Sometimes his busy schedule confuses him, and he’ll get overbooked. But he’s not slowing down. “The only time I’m watching TV is if there’s a ballgame on,” he says. “I’m always trying to do something to stay active.”

Improving Dementia Care

Families and care partners have also been part of the movement to change dementia care, pressing for more education and better access to resources to do their jobs better. “You can’t live well with dementia unless you improve care,” Kales says.

If you and your loved one are feeling isolated, consider seeking out a memory café, an outlet for people with dementia and their care partners. Joe Nicoletti, 63, of Philadelphia, began going to a café about two years ago with his wife, Theresa, now age 65, who was diagnosed with early onset Alzheimer’s in 2010. As her disease progressed, the couple felt increasingly alone. Even old pals since grade school days stopped calling. “The friends we used to have all of the sudden seemed to have abandoned us,” Nicoletti says. “We stopped getting invited to parties.” He quit taking his wife to the local diner after Mass on Sundays, a favorite ritual, because people stared as he fed her.

The Penn Memory Center at the University of Pennsylvania referred Nicoletti to its café, in a neighborhood church’s donated space. Care partners and their loved ones meet once a month for coffee and pastries, while they socialize and are entertained by local classical musicians or a singing group. “My wife always perks up when she hears music,” Nicoletti says. “And I got to meet some new friends.”

The number of cafés is expanding around the U.S., and many are free. Use the Memory Café locator.

Educating yourself about dementia also can help you improve your ability to provide care. More organizations are using virtual reality to help care partners understand the complexity of symptoms—because dementia affects not only memory but also hearing, facial recognition and other senses—as well as to gain insight into a loved one’s experience.

Embodied Labs uses a virtual reality experience to take the wearer inside the brain of an Alzheimer’s patient. The experience helps the wearer understand how neurons work normally and how the disease disrupts them. At one point, the wearer experiences sundowning, a common fear that afflicts people with Alzheimer’s when they are alone in a dimly lit room. You feel threatened in the shadows. You don’t recognize your daughter when she arrives.

The daughter then turns on the light, plays music, helps to calm you, and sits and engages you in a puzzle. The idea is to help care partners change their practices to reflect their loved ones’ needs.

Carrie Shaw, the company’s chief executive officer, says she helped develop Embodied Labs after caring for her mother, who had early onset Alzheimer’s. Looking back, she realized she would have been a better care partner if she had understood more about what to expect. Embodied Labs trains health care professionals, medical students and volunteers. You can contact Embodied Labs to see if an organization near you offers its training. Second Wind Dreams , a nonprofit dedicated to aging issues, also produces a virtual dementia tour used by elder care organizations around the U.S.

You can help someone with dementia in old-fashioned ways, too. Engage loved ones by tapping into their interests and tailoring an activity to their skills. If your dad used to like to fish, bring him a tackle box to organize. A person’s long-term memories and interests are well preserved, even in the late stages of dementia, says Nancy Hodgson, a professor at the University of Pennsylvania’s nursing school and an expert in dementia care. People with dementia who once participated in choirs or loved music typically respond when they hear music, sometimes singing along even when they don’t otherwise speak, she says.

If you’re having trouble connecting, use a prop, such as reminiscing over an old photo album together or going for a nature walk, says Daniel Potts, a Tuscaloosa, Ala., neurologist and faculty member at the University of Alabama School of Medicine. Ask your local museum about special tours for people with dementia. Or find an art therapist locally through the American Art Therapy Association.

People with dementia can’t always communicate directly, but their behaviors are trying to tell you something. Kales worked with a family whose daughter complained that her father was stubborn and resistant to getting in and out of the car for his appointment. Kales examined him carefully and found he had a torn rotator cuff—he was trying to tell his daughter about his pain through his actions. Kales and her colleagues are trying to help care partners and health providers view behaviors of people with dementia not as annoyances or problems that require medication, but instead as forms of communication. The idea is to “think like a detective” and look for underlying causes, such as an infection or being overstimulated. Learn more about this method, called the DICE Approach.

Being a care partner, especially for someone with advanced symptoms, can be challenging. “You’ll need to rise to the occasion,” says Potts. You can still sit at a bedside, sing to a loved one, and look into his or her eyes. Mostly, you need to be fully present. “It’s easy to say, ‘Oh, this person doesn’t recognize me anymore and it doesn’t matter if I’m here,’ ” says Potts. “But as a person advances into the disease, they need more and not less love. It can be almost a holy moment. Go and spend some time in that space.”Potts’s thinking on dementia shifted from solely a medical focus to a person’s quality of life after his father took up painting for the first time in his life following an Alzheimer’s diagnosis. Potts recently organized a panel of people with dementia to speak at an international conference for neurologists to spread the word to the medical community to respect dementia patients’ humanity as part of their treatment. “People with dementia still have a story,” Potts says. “They still want to express themselves.”