How Dementia Bootcamp Helps Caregivers
From learning about the disease to gaining support from others, these programs (kindly) put you through your paces.by Sonya Collins Health Writer
On a Saturday morning before the pandemic hit, when people still gathered indoors, adults of all ages filled a meeting room at a senior center in West Los Angeles. A few were young adults, some were older seniors, most were in late middle-age. The majority were women, but there were a few men, too. They grabbed coffees and muffins and quietly found a seat at one of several round banquet tables. The room was quiet at first, but it soon became almost raucous with conversation. Though they came from different walks of life, these strangers had at least one thing in common: Each cared for a family member or friend with dementia.
For the 15.7 million caregivers of people with dementia in this country—and if you're reading this, you very well may be one of them—every day can bring a new question or a new challenge as the disease progresses. This is especially true for those who care for the 2.4 million dementia patients in the U.S. who experience symptoms of psychosis, including sensory hallucinations as well as delusionary, false beliefs. When a loved one sees things that aren’t really there, or believes a loving family member may be out to harm them, things can get extra challenging, fast.
What's more, all too often caregivers describe their experience with a loved one’s doctor as “diagnose and adios.” In other words, a doctor confirms that, yes, it’s dementia—then sends families on their way, their heads full of unanswered questions.
If this sounds all too familiar, there are programs out there where you can get answers. The LA-based "Caregivers' Bootcamp" is one of a handful of training options available across the U.S.—some of them now available online.
“We want to reach the caregivers who need us the most—the ones who can’t process all the information they find online because they are juggling 10 different things: their children, their spouse, their job, and a family member with dementia,” says Zaldy Tan, M.D., a gerontologist and director of the Memory and Aging Program at Cedars-Sinai Medical Center in Los Angeles.
Dr. Tan's intensive, one-day workshop combines presentations, small-group seminars, and a support group-style discussion to equip overwhelmed relatives with the tools they need to face the job ahead.
How Bootcamp Began
If you’re new to caring for a loved one with dementia, you might think you’ve got this—that don’t need any special training. After all, you’ve known your spouse or parent with dementia for many years, maybe even your whole life. But when you add dementia to the equation, especially dementia with behavioral issues (which 90% of dementia patients experience, according to the Alzheimer’s Association), everything changes. Your loved one is very likely no longer the person you’ve always known.
“Communication changes, behavior changes, needs change,” confirms Christina Irving, L.C.S.W., director of client services for Family Caregiver Alliance, an organization that provides support to family caregivers. “The ways that you used to resolve conflict may not work anymore.”
Dr. Tan's bootcamp helps families face those changes head on. The idea for the program first came to him when he and his team of nurse practitioners working with dementia patients found real gaps in caregivers’ knowledge. Crucial information was missing, he says, such as an understanding of the disease itself; knowing how to accurately spot its many symptoms; being prepared to cope with the demanding role of caregiver; and knowing how to deal with safety issues, both for a loved one with dementia and the caregiver.
If this sounds like something you could use, get ready to go through your paces. A bootcamp run-through begins … right now.
OK, let’s say you’ve signed up. At the start of the seminar, Dr. Tan will walk you (and the entire group) through every stage of dementia, from mild to severe. He does this because “even though caregivers know their loved one has this diagnosis, it doesn’t always sink in: Dementia is a neurodegenerative disease that will progress.” When you know what stage of dementia your family member is in, you can better plan for what’s ahead, he adds.
Once the discussion shifts to coping as a caregiver, Dr. Tan and other moderators stress the importance of not showing visible or audible frustration or anger to your spouse or parent. When you have to repeat yourself over and over, for example, you may sigh heavily or raise your voice. But your loved one has memory loss, Dr. Tan likes to remind trainees. That doesn’t make them unable to perceive emotions.
“You have to get out your frustration somehow, but it’s not good to do this by speaking in an angry tone or slamming a door,” he explains. “They can sense your anger. Emotion is not memory. In fact, emotions are pretty resistant to dementia.”
It’s important to spare your loved one your anger and exasperation, he adds, because it may only add to the agitation, anxiety, and fear that people with dementia face .That includes the sometimes harmless, sometimes unsettling delusions and hallucinations that so often come with this disease, as well as related behavioral issues, including aggression, agitation, wandering, and “sundowning” (late-day confusion) which can arise during the moderate and severe stages of dementia.
You might also get frustrated with delusions that your loved one may insist are true. Delusions are the most common symptom of dementia-related psychosis. Usually, people who have delusions will think that someone is stealing from them or that their spouse is cheating on them. Dr. Tan advises that you avoid confrontation—better to keep it brief. Soothe them and show support with simple statements like, “Here’s your wallet right here,” for example, if they think it was stolen.
Toward that end, at bootcamp roleplaying sessions can be beneficial. Caregivers pair off with trained actors to act out such scenes and practice the most effective response. The actors, who play dementia patients, portray typical symptoms of dementia-related psychosis and the trainees try out the strategies they just learned—and then get feedback from the group.
Later in the day, you’ll be put in smaller groups to watch videos that present some of the challenging scenarios you may soon face (or have already faced) as a result of dementia-related psychosis. This might include sexually inappropriate behavior, or refusing to bathe or take medicine. You and other trainees then get tips for handling such erratic displays. For example, when your loved one interacts with a harmless hallucination—maybe she’s petting her dead cat, say, or giving a flower to an imaginary friend—you’ll be taught how to “distract and redirect.” This means gently retraining your loved one’s focus, perhaps to chat with you directly, right now, about the great weather, rather than arguing with them that the cat passed away years before, or insisting that there is no flower, much less an imaginary friend, in the room.
For most of bootcamp, you and other trainees will work in groups where everyone can ask questions and get detailed feedback. So while one group might be learning about safety, you might be doing a session on physical activity with a recreational therapist who discusses the best types of physical activities for people with each stage of dementia. Other sessions go over services that many caregivers may not even be aware are available to them.
One of the most engaging sessions, however, is when you break out into small support groups. Dr. Tan notes that while many trainees would never consider joining an actual support group outside of bootcamp, most are surprised to find the experience extremely helpful. (He says he built one into the bootcamp so people have no choice but to give one a try.) “Some people share feelings and frustrations they’ve kept bottled up for so long. It’s a very powerful experience. A lot of them walk away saying, ‘I can’t believe I haven’t taken advantage of this before.’”
Bootcamp trainees share their experiences with each other, too, outside of structured groups. A less-experienced caregiver may bring up a question or a troubling problem, which is soon answered by someone who’s already traveled that particular road, ready with a solution.
“It’s great to hear advice from someone who has walked the walk,” Dr. Tan says, “but it’s also great for these caregivers who go in there saying, ‘I know nothing, please educate me,’ and suddenly they’re the experts in the room.”
You’ll also learn how you and other family members can keep your home safe for your loved one with dementia, Dr. Tan says. That means securing rugs and uneven flooring to prevent falls. But you’ll also learn about lesser-known hazards—some that can arise from psychosis.
“If your family member tends to wander out of the house, what can you do to prevent that? Maybe don’t keep your keys and jacket by the door if those items signal that it’s time to go out,” he explains.
People with dementia who have delusions about the people in their house can sometimes get aggressive or violent, too. If your loved one is violent with you, it’s time to talk to a doctor about it, Dr. Tan advises. The non-medical strategies you’ll learn in dementia training may not be enough anymore.
All Types of Recruits
Your fellow caregivers in the room come from many different stages in the dementia-care journey. Some are brand new recruits. Others are veterans who may have felt they had everything under control—until their loved one’s disease got more severe.
Gender and generational differences can equip people differently for this role. The bootcamps are made up predominantly of women—in part because women tend to outlive men by an average of five years, and also because women traditionally take on caregiving roles in their families. The oldest men who attend are often among the most overwhelmed, says Dr. Tan. “The challenge with male caregivers of a certain generation is that gender roles were different back then,” he adds. “Men didn’t cook or do housework or participate in caregiving.”
One man who attended the bootcamp didn’t know his way around the kitchen, and he couldn’t operate the washing machine—but found himself needing to bathe, dress, and feed his wife. At bootcamp, he got advice for how to improve his skills, and also learned how to access in-home assistance for which he didn’t even know he was eligible. And, he found plenty of understanding among his peers.
“He was very stressed out,” Dr. Tan says. “He needed to perform tasks he’d never had to do in his life. But he met other male caregivers [at bootcamp] who’d taken on the same role, and he got a lot of support and admiration from everyone in the group.”
Bootcamp and COVID-19
You might be thinking, “This all sounds great. But, hello—COVID-19! I can’t go to bootcamp. In fact, I can’t go pretty much anywhere.” And it’s true: The pandemic has forced changes onto the program, just as it has with everything else. However, there is some good news: Caregivers’ Bootcamp has moved to a completely virtual format. Dr. Tan says that while an online experience can never be a true replacement for in-person learning and support, it does offer beneficial bootcamp training to people in different parts of the county who would never be able to join the program in any other way.
He also notes that even during the best of times caregivers can feel isolated. Right now, the whole world is literally shut in—so you might be feeling the effects of quarantine even more acutely, or like you’re never, ever relieved from dementia duty. Bootcamp training would tell you to ask for help, use an adult daycare center, or call on a family member or friend to take on a shift or two. But with fewer resources available during the pandemic, he acknowledges how “caregivers have no option but to be with the care recipient 24/7. The levels of stress and anxiety for both people are very, very high,” Dr. Tan says.
In addition, the challenging behaviors of people with dementia—like aggression or wandering—can be even more pronounced in times of high stress and anxiety. "That's why this kind of training is more important now than ever. Now is not the time to land in a hospital."
Finding a Bootcamp In Your Area
Dr. Tan’s bootcamp is just one program. Across the country, the pandemic may have actually improved training opportunities for dementia care. “Now, there are more telehealth and virtual options, so people are less constrained by the limitations of the services in a particular geographic area,” says Irving of the Family Caregiver Alliance.
Some programs, such as BRI (Benjamin Rose Institute on Aging) Care Consultation, are phone-based. BRI links up caregivers anywhere in the U.S. with consultants—typically a nurse or social worker—who call routinely to check on you, troubleshoot, and answer any questions you may have.
“You don’t have to leave your home to attend a class,” says David Bass, Ph.D., senior vice president of Benjamin Rose Institute. “Caregivers get a coach who’s a professional, knowledgeable source of information.”
Bass describes BRI Care Consultation as a follow-up to in-person courses. Classes and seminars orient caregivers as to what they need to learn and what resources are available, while care consultants, he says, provide ongoing coaching throughout the caregiving journey.
If you would like to find dementia-care training, in addition to an Internet search for courses, check the following national and local organizations for offerings:
Caregiving can be enormously isolating. But that doesn’t mean you have to do it alone—because you’re not alone. More than 65 million adults have played the role of family caregiver. A wealth of knowledge from their experiences, and the researchers who’ve studied them, is ready and waiting at a dementia training program to assist you.
- Family Caregivers (1): American Psychological Association. (2011). “Who Are Family Caregivers?” apa.org/pi/about/publications/caregivers/faq/statistics
- Family Caregivers (2): Family Caregiver Alliance. (2019). “Caregiver Statistics: Demographics.” caregiver.org/caregiver-statistics-demographics
- Dementia Training: Bright Focus Foundation. (2021). “Caregiver Training: What You Need to Know.” brightfocus.org/alzheimers/article/caregiver-training-what-you-need-know