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Nobody can teach you how to navigate the tangled web of conversations about dementia.
THE TALK

Science can’t fix dementia’s most heartbreaking problem

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On a balmy weekday afternoon around the time spring was melting into summer, my partner and I made plans to meet up after work. We picked a spot in my neighborhood, which happens to be near the Nationals baseball stadium. As we sipped our beers and chatted about the week, my partner, Ben, saw two of our friends, Tom and Hannah, on their way to a baseball game. He waved them down and invited them to join us before the opening pitch.

It would have been a perfectly forgettable evening—pleasant and ordinary. DC is small enough that it’s not too uncommon to run into friends. We hadn’t seen Tom and Hannah for a bit, and I knew Tom had been visiting his hometown in Connecticut. “How’s your family doing?” I asked.

Tom and Hannah exchanged glances. 

“Actually, not great,” he said. 

A few months ago, he shared, his dad had abruptly lost his short-term memory. He’d be doing something like cooking a meal and forget what he was doing; he’d put the stove on and leave the room, or he’d be driving and forget where he was going. He was only 61. 

Now, Tom’s dad had quit his job working at a trucking company, and was living at home with his wife, Tom’s mom. She was taking care of him while also watching her grandchildren, Tom’s niece and nephew, both younger than 6. Tom’s visit to Connecticut had largely been to talk to his siblings, mother, and father about how they were going to help take care of him. Tom told me he had decided to quit his job as a pharmacist to move up with his family over the summer while they figured out their new living arrangements.

It was heavy for small talk. I remember that I expressed empathy and concern, and asked a few questions about his dad’s overall health. Doctors so far had no idea what was wrong: no prior history of memory loss, no family history of dementia.

The journalist in me wanted to keep asking questions. I had been covering dementia-related research long enough to know that a sudden onset of memory problems before 65 was probably not good. But there had to be some explanation. Memory problems usually point to Alzheimer’s disease, but the short-term memory loss seemed unusual. Maybe vascular dementia? 

The friend in me, thankfully, told me to shut up. We listened to Tom, and offered any support we could while Tom was gone over the next few months. Eventually, we said our goodbyes; they went to the game, and Ben and I went home.

It was a jarring conversation, and embarrassing. I had thought myself something of an armchair expert in the current state of neurodegenerative health; I had read the newest scientific papers as they came out, and spoken to top neurologists. At that point, even if scientists hadn’t discovered all the answers to preventing or treating dementia, they had leads. Biomarkers to detect mild cognitive impairment earlier seemed promising, or therapies that target neurological inflammation or microbial pathogens. Scientists just had to design and run experiments, and write up the papers so I could report on them.

Talking to Tom made me realize that no matter how far science had come, there was a whole set of problems science won’t ever be able to solve: What actually happens to you. No matter how far science advances in the next 10 or 20 or even 100 years, it will never be able to pinpoint the steps to take if you ever have to talk about and deal with a dementia diagnosis yourself. In my reporting, I had conveniently overlooked these questions, because they didn’t concern the lab bench, and therefore me. 

But Tom and his dad are only a few years older than me and my mom, respectively. Tom’s dad is the same age as mine. Dementia had suddenly become real, a burden I could feel one of my friends carrying. And I knew next to nothing about it.

In my mind, there are no questions without answers: It’s just a matter of finding the right expert. If scientists couldn’t tell me the best way to care for your loved one who’s been recently diagnosed with dementia, there had to be doctors or policy experts who could. I figured that at the Gerontological Society of America in Austin, Texas, there were bound to be loads of people with answers.

Walter Dawson, public health policy expert currently with the Global Brain Health Institute in San Francisco, was one of them. At age 8, Dawson started caring for his father, who had developed Alzheimer’s disease. 

In an interview at the conference, I asked Dawson what changes could help patients and their families better manage care. “If we can detect cognitive impairment at an earlier point, there’s a pretty clear benefit to individuals who are living with dementia,” he said. “It’s an opportunity to begin care planning and disease management at an earlier point in the disease process.” He recalled research from 2014, in which a group based in the UK had found that a person with dementia could save 17% of their annual costs if they were diagnosed a few years earlier than most people are diagnosed today.

Except early diagnosis isn’t accessible for many. “It’s an equity and access issue,” Dawson said. In the US, there’s a shortage of geriatricians—doctors who specialize in treating older adults with multiple chronic conditions—and neurologists. Patients may have to wait up to six months for an appointment, for example, or drive 75 miles away. 

If we could, we’d start in our 20s, 30s, and 40s thinking about what we want in the future.

And once they’re there, maybe they don’t want to bring up their brain health at all. There’s a stigma surrounding dementia and other cognitive issues. Many people feel like they can’t bring it up with their health care providers for fear of receiving a diagnosis they don’t want to hear, or losing their independence. Doctors themselves may be no better: A recent study by the Alzheimer’s Association, an advocacy group, found that only about 16% of seniors reported actually getting a regular screening (pdf). It’s kind of like, Who’s going to ask the other to the dance? Joanne Pike, the chief programming officer at the Alzheimer’s Association said. 

That stigma is the same reason it’s so hard to bring up cognitive health with an older adult you love. Although there are packets of information online about the importance of having these conversations, it’s really tricky to pin down the how.

I asked Dawson for some specifics, naively thinking that there was some sort of script. He paused. It was really just about focusing on the needs of the individual, he said. His best advice was to start thinking about it as early as possible. “If we could, we’d start in our 20s, 30s, and 40s thinking about what we want in the future,” he said. Pike echoed this sentiment. If your loved one reacts negatively to questions about their cognition at first, she added, try backing off and waiting for another time. 

These were not the kind of concrete answers I was hoping for. As I thought about who could possibly be the right expert for my question, it hit me that I talked to two nearly every day: My parents.  

When my maternal grandfather was diagnosed with dementia 20 years ago, my parents were some of his primary caregivers, along with my mom’s two siblings. I was only 7 at the time; I remember visiting Grandpa John in an assisted living home, and eventually a nursing home (it frightened me), but not much else. Surely, though, my parents had gone through this kind of conversation. And since they’re both chemists, they were likely to answer with some of the scientific specificity I craved.

“Do you think I could interview you about caring for Grandpa John?” I texted my mom. “Or confronting him about his dementia?” 

My parents agreed. They called me over speaker, and when I brought up the question again, my mom laughed: “It doesn’t work like that. There’s no ‘confronting.’” In my grandfather’s case, she said, it would have been like confronting a toddler. “You could have the same conversation multiple times and you’d think he’d leave with an understanding of what would happen, but he wouldn’t remember.” 

Toddlers, though, eventually learn and get better over time. Grandpa John did not. He had blamed some of his early memory loss on hearing trouble; instead of acknowledging that he’d forgotten something, he’d say he just never heard information to begin with. My parents only noticed something was really wrong when John was driving up to visit them from Florida to Pennsylvania. He got lost on the way, and couldn’t figure out how to read the map. Finally, he went to a gas station and gave his cell phone to the manager, who told my dad where to go get him. 

He was diagnosed with dementia within a year. My parents started making arrangements for him to live in a nearby assisted living facility. They told him that he’d be testing it out to see if he liked it, when in reality they knew he’d be there as long as he could. He signed paperwork to give over his power of attorney, but he didn’t really know what was happening, they said. He was already too sick.

Eventually, after he started getting lost in the complex and wandering into other apartments, my parents, with the approval of my mother’s siblings and their spouses, transferred him to a nursing home. Back then, it cost about $6,000 a month, my mom recalled, although it’d probably be more like $10,000 today. They used Grandpa’s savings to cover the costs. It was enough to last until he passed away, although there was nothing left for them to inherit. 

 There was no early planning for Grandpa John, my parents said, no real conversation; they just had to act. And even today, that’s the same position that most families with loved ones with dementia wind up in. 

Tom and his family found themselves acting on a single day in January 2019. “He had called my mom and asked the same question over and over again,” Tom said. His mom knew this was unusual, and called his dad’s office to ask his coworkers if they had noticed anything strange. They had. His mom convinced Tom’s dad to drive straight to his primary care provider, who called an ambulance. 

Tom’s dad has diabetes, and in the emergency room, the doctors paid attention to one of his medications in particular. It lowered his blood sugar but not his ketones, which are acidic; having too much of them in the blood can lower the blood’s pH, a potentially fatal condition called diabetic ketoacidosis. He stayed in the hospital for four days getting his levels back on track. 

His primary care physician had hoped that the short-term memory problems would resolve themselves with the ketoacidosis. 

They did not. 

“My mom would have told you immediately we realized that memory wasn’t there,” Tom said later, in an interview in November. It took longer to convince the doctors; they waited a few months to see if it would return. When it didn’t, Tom’s family started taking his dad from specialist to specialist. “I was never really looking for a diagnosis,” Tom said: Because of his background as a pharmacist, he suspects the diabetic ketoacidosis caused some permanent brain damage. It likely wouldn’t show up on tests or brain scans because it hasn’t been studied. 

“Had you given my mother a true diagnosis, it would have helped her come to terms with the situation,” he said. But when it became clear that doctors likely weren’t going to give them concrete answers, Tom decided he needed to go home to be with his family over the summer. 

His parents had moved in with his sister to try to manage his dad’s care in April; it wasn’t a good fit. Tom helped them move into a bigger home they shared with his brother. In early November, Tom’s dad got an MRI at Yale, a hospital about 30 minutes away, still searching for answers.

In the meantime, Tom’s family completely overhauled his father’s medications for diabetes, simplifying things as much as they could to avoid future emergencies. The house is now full of sticky notes to help his dad keep track of his daily activities, including taking his medicine and remembering everyone’s schedule for the day. 

They also decided to take care of end-of-life planning while they still could. Though Tom’s dad has lost his short-term memory, he’s lucid enough to have agency over these major decisions. Tom’s mom now has legal power of attorney for his dad; Tom has medical power of attorney.

Arguably, taking care of legal matters like this are some of the most important steps a family can take with an early dementia or cognitive impairment diagnosis. Same goes for finances—figuring out the kind of care that you want later in life, and how you’re going to pay for it. The Alzheimer’s Association and American Association of Retired Persons both have resources that outline some of the specific steps involved, but they all still require contacting a lawyer. These processes can take months, and they’re complicated.

Tom’s family’s experience was unique in that it happened so quickly—within a day. And my own family’s situation happened two decades ago, when they got a diagnosis too late. I was curious about what this process would look like for someone who didn’t have a rapid-onset emergency. 

So I called Jay Reinstein, who works with the Alzheimer’s Association as a national early-stage advisor. Last year, after having problems at work—forgetting department names, having trouble answering questions in meetings—he called a friend of his, a neurologist at Duke. Soon, he was diagnosed with mild cognitive impairment, and then, in the same year, with younger-onset Alzheimers. 

“I knew nothing about wills,” said Reinstein, now 58 and living in North Carolina with his wife. But he almost immediately took proactive steps for himself. He told his supervisor, who worked with him to come up with a plan for him to stay in the office for six more months to finish his final projects. He was also able to take all of his sick leave at the end of his tenure, which enabled him to get a salary for a little longer. 

During that time, he switched his power of attorney to his wife, and organized his government pension so that it would go to her after he passed. He and his wife also decided that it would be best for him to have a 24/7 in-home nurse, instead of going off to a nursing home; they budgeted $20,000 per month, which they figured they could afford through his retirement savings. 

Reinstein’s case is the textbook model for planning early—especially with ample resources, monetary and otherwise, which he recognizes as a unique privilege. Yet over the phone with me, he was anxious. He wants to know exactly what his life is going to look like, and his neurologist doesn’t have answers. Dementia is as unique as the person it affects: Maybe he’ll still be able to volunteer as an activist with the Alzheimer’s Association; maybe his outings will be limited to lunches or movies with friends.

It just sucks.

When it comes to dementia, there’s so much you simply can’t plan for. And when caregivers have to act fast—like my family, and Tom’s—their ability to jump in is highly dependent on their privilege. In many ways, we’re the lucky ones: My parents are highly educated, and had enough resources to take care of my grandfather. Tom’s family was also able to reshuffle their living arrangements to take care of his father, and being in the medical field, Tom had extra background knowledge that eased the transition. 

Still, it’s never easy. In addition to figuring out how to care for her father, my mom was working full-time as an executive, raising me, a 7-year-old, and dealing with a complicated pregnancy that took her to the emergency room multiple times. After giving birth to my brother, she was then caring for an infant. “Every day, I’d just wake up and think, Who am I going to disappoint today?” she told me. 

With Tom’s dad retiring early, they’ve had to dip into his mother’s retirement savings to cover some of the costs of healthcare. And although Tom’s been able to find a new job, he’s still had to spend time away from Hannah, his now-fiancé, and friends.

“It just sucks,” Tom said. When I talked to my mom about taking care of Grandpa John, she said exactly the same thing. 

Right now, Tom’s dad keeps as busy as he can. He spends many of his hours fixing things around the house, and spending time with his wife and grandchildren. He and Tom text about sports, and his family keeps in touch to make sure they’re all in the loop about his doctor’s appointments. Earlier this month, Tom’s brother took their dad back to get his MRI results: Like all the other tests, they were inconclusive. 

In covering neuroscience, I want to believe in its potential to eliminate uncertainty. Surely, all the advancements in the past two decades would be enough to give Tom and his family a clear idea of what was wrong, and some kind of a path forward. 

But talking to Tom made me realize I had woefully overestimated science’s ability to solve personalized problems. During a conversation with Tom over the phone while I was in Austin and he was home in Virginia, I awkwardly offered that lifestyle modifications—like avoiding smoking and drinking, socializing, exercising, and getting a healthy diet—were some of the most promising risk-reduction interventions dementia research had to offer. 

My words felt weak. Sure, anyone can go for a walk around the block, and maybe it’d be enough to keep it from getting worse. It’s not a long-term game plan, though. Without his dad’s short-term memory, his family’s life is a new kind of normal. 

“No one would ever be prepared for that sort of thing,” Tom said. Even with his background, surrounded by morbidity and mortality statistics in the pharmaceutical world, wasn’t enough to ready him and his family for this kind of emergency.

Science may one day provide answers and protocols for people who develop dementia. But those are years away. People today don’t have time to hem and haw. They need to make decisions now, and they probably won’t be perfect. But at least Tom and his family are making them together.