For most people who receive one, a diagnosis of dementia marks a big shift in their life. Dementia causes a lot of disruption in the form of sometimes dangerous symptoms, including:
— Impaired memory, language and communication skills.
— A loss of ability to pay attention and focus.
— A loss of good reasoning and judgment skills.
— An increase in feeling confused or disoriented.
— Increased irritability.
— A reduction in visual perception.
— A reduction in the ability to care for oneself and attend to the activities of daily living, such as preparing meals, keeping appointments and traveling.
Some 5.8 million Americans are living with an Alzheimer’s diagnosis, the Alzheimer’s Association reports, and around 16 million unpaid caregivers are looking after them. But as the patients and family members who’ve shared their stories here note, the diagnosis is not the end. With the right support, there’s a lot more life to live and joy to experience.
Julie Burger of Vancouver, Washington, hid the initial symptoms of her dementia from her husband, Les. For more than two years, she had been losing her photographic memory, “slowly but surely,” she says. Born in Puerto Rico, Julie speaks six languages and had been the valedictorian of her high school class. She’d earned a master’s degree and served in executive and volunteer roles for the American Red Cross for half a century. All of this academic and professional success had been buoyed by her incredible memory and her voracious appetite for the written word, so when her photographic memory started to slip and her rate of reading and level of comprehension dropped, she knew something was wrong.
Her husband, Les, had been an internist, and he says he missed the early signs despite his medical training, because she hid her struggles so well. “Julie’s the smart one in our family,” he says. “She was able to keep this to herself, and I really wasn’t aware of it until she came to me about four years ago and said ‘something’s wrong.'” By then, her mathematical abilities had slipped, too.
Once Les knew there was a problem, they went to see a doctor who diagnosed mild cognitive impairment. A year later, in 2016, Julie — then 76 — had an amyloid PET scan that confirmed she had Alzheimer’s disease. “I’d never heard the word Alzheimer’s before,” she says. But getting a diagnosis has enabled the Burgers to access treatment and helped them prioritize certain aspects of their lives. “Julie is still in the early phase of the disease,” Les says, and while she retains some cognitive capacity, the couple are busy visiting as many family members and friends as they can. “She thrives on being with friends and family, and we’re taking the time to visit them, mostly locally. The problem is that our world has gotten a lot smaller for both of us” since she developed Alzheimer’s, he says.
Some of the smaller changes Alzheimer’s has brought have been the hardest to cope with. “Julie doesn’t remember our wedding. She doesn’t remember the names of certain people. That’s a lot more livable than the short-term memory problems. Literally from moment to moment, she puts something down and doesn’t know where it is. When we’re staying at someone’s house, she can’t remember where the bathroom is. She can’t do finances at all and has no concept of time any longer and has trouble telling time. She can’t follow a recipe. She can’t make nectar for the hummingbirds anymore.”
Les acts as Julie’s primary caregiver, and though she sometimes tries to push him away out of frustration over what she can no longer do for herself, she’s grateful for his support. “Les has been wonderful through this whole thing. He’s my walking-talking Google. He’s wonderful and he gets me to where I need to be.”
Julie is currently enrolled in a clinical trial of an Alzheimer’s medication. Although they don’t know whether the trial will make a difference in her case, the Burgers are clear-eyed about the need for further research and treatment options for others with the disease. As a doctor, Les says the anticipated spike in dementia diagnoses in America’s aging population “reminds me of when we first learned about HIV/AIDS. There were these young people getting these incredibly bad infections and dying and we didn’t have a clue. Here it is 35 years later and yes, we have treatments, but they’re expensive. HIV/AIDS hasn’t been eradicated, but it’s better, and transmission rates in the U.S. have declined. With Alzheimer’s we’re in the same position. This big tsunami is coming and we have to figure out how to deal with it and develop treatments. We have to see if we can halt this disease and cure it one day.”
Involvement in a clinical trial has also been an important aspect of how David and Kim Shorr of Bexley, Ohio have dealt with his Alzheimer’s diagnosis, which occurred about three years ago when he was just 56 years old. The clinical trial, being conducted at The Ohio State University Wexner Medical Center, is looking at whether ultrasound technology can help open the blood-brain barrier to enable therapeutics into the brain and possibly encourage the brain to clear the beta-amyloid plaques that are one of the hallmarks of Alzheimer’s in the brain.
Being involved in that trial has helped Kim and David find some meaning in his disease, which initially started with him “doing things that just didn’t make sense,” Kim says. “I was thinking it was ADHD. He couldn’t focus, but I knew something was wrong. I felt like I was being punk’d all the time,” she says. Some of the more frustrating behaviors he exhibits include “moving things around that don’t need to be moved,” and asking the same question multiple times.
Troubled by his odd behaviors, Kim encouraged her husband to visit a doctor, and David agreed to see a psychologist who then referred the pair on to a psychiatrist. They were eventually referred onward to a neurologist. Because David was younger than most Alzheimer’s patients are, it took a little but more sleuthing to arrive at the right diagnosis than it might for an older patient. But they stuck with it.
Kim says getting a diagnosis was in some ways a relief — to have a name for the condition and a path forward in managing it took away some of the anger and frustration she was feeling. Still, it’s not easy being the primary caregiver for someone with dementia. “Sometimes I have to take a deep breath and walk away,” she says. Even though she knows that none of the frustrating behaviors David exhibits are intentional or malicious, it is still difficult and exhausting for caregivers and loved ones to deal with the symptoms of Alzheimer’s on a day-to-day basis. But Kim is committed to supporting her husband of 30 years. “He’s living at home and he’s still OK to do some things. We just have to watch. We have to remind him to shower and eat and make sure he takes his medicine. I don’t think he realizes it or sees how much he doesn’t do. But we just keep going,” she says.
Tom Doyle of Shaumburg, Illinois, had been a professor of education at Concordia University Irvine and National University Los Angeles for 25 years until he retired in 2016 at age 63, around the same time that he received a diagnosis of Alzheimer’s disease and secondary Parkinsonism. The diagnosis came about because — despite his decades of experience in the classroom — “all of the sudden, I started to forget the lectures that I had given for years and years,” he says. “I would get lost in papers I was grading and started to lose my ability to read. I was losing words and repeating myself. The job I was doing became almost impossible. All those things created a great deal of anxiety in my life,” he says, and his husband, Levi, started to notice these changes, too. He commented that Tom’s home office was in disarray and encouraged him to talk to a doctor.
Forced into retirement and grieving the loss of the career he’d loved so much, Tom found himself depressed. He started to isolate himself. “It was probably some of the darkest moments of my life. But my dear husband — he’s incredible — asked me one day if I thought I’d be more supported if we lived in Chicago,” where Tom’s family is. So they left California and moved back to Illinois.
There, Levi acts as his primary caregiver, and it’s a tall order, because Tom can’t safely care for himself any more. Though the diagnosis has been challenging for both of them, Tom hasn’t lost hope. “I want people to know that I have dementia, but dementia does not have me. That’s the most important thing for people to know. There’s hope, and there is life. Every day, there’s incredible life to live. Even as I struggle with the symptoms of dementia, there’s always reason to hope and I have a great life. I have the best team of doctors and the support of so many people. Life is really good.”
What to Do If You or a Loved One Is Struggling
Alzheimer’s and other forms of dementia can have profound impacts on patients and the people connected to them. But Ruth Drew, director of Information and Support Services at the Alzheimer’s Association, says it’s important to realize that your family doesn’t have to go it alone in coping with an Alzheimer’s diagnosis. Drew oversees the AA’s 24/7 hotline call center (800.272.3900) where specially trained counselors field calls from thousands of people each week who have questions about any and all aspects of Alzheimer’s and other dementias.
“Often we get calls from people who are seeing signs of Alzheimer’s who want confirmation that’s what they’re seeing and advice on what they should do next. Sometimes we get calls from people who’ve just gotten a diagnosis who want to know what resources are available and what to expect. Very often we get calls from people in the midst of caring for a family member or loved one, and they’re looking for resources and tips and education or just someone to talk to,” Drew says.
Call volume “ebbs and flows” throughout the year, with spikes usually coming after the holidays when family members may have observed unusual behavior or other symptoms, she says. On average, the center gets 5,000 to 6,000 calls a week, adding up to more than 300,0000 a year. In other words, there are a lot of other families and patients out there in the same boat. Connecting with them via support groups or through one of the AA’s 78 local chapters can be a lifeline for many people struggling to deal with the day-to-day challenges of Alzheimer’s and dementia.
No matter what your specific situation is, Drew recommends reaching out at the first sign of trouble, because early intervention can make a big difference in how patients and caregivers experience the disease. It might be difficult to initiate the conversation with a loved one, but “we want to let people know how important the conversation is,” and that help and support is available. These aren’t easy conversations, she acknowledges, but having one is an act of love. “Just find a place to start. We’ve found that 90% of people would want to know” if their loved ones have noticed a change in their cognitive abilities.
Even if you think your loved one isn’t open to discussing a potential problem, Drew says “it’s still important to try,” and you “don’t have to have the whole conversation at once. You can plant a seed and circle back.” The AA has developed a resource called Conversation Starters that might help you figure out how best to approach a loved one with your concerns.
The goal should be to get your loved one in to see a doctor as soon as possible to get started on a diagnosis, because it’s not always a straightforward process. “There’s no blood test for Alzheimer’s,” she notes, and symptoms of dementia and cognitive decline can be signs of other illnesses, not just Alzheimer’s. But early intervention and connecting with the right support can make a world of difference.
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