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How iPods, iTunes And Spotify Can Help Treat Dementia

Founded in 2006, Music and Memory is helping prove that music can be a powerful healing tool, especially for the elderly.

In 2006, Dan Cohen heard a story on the radio about how everyone now had iPods. But he didn’t believe it was true, especially for older people. So, he Googled “iPods and nursing homes” and couldn’t find one facility that provided residents with personal music players. A social worker by training, it made Cohen think: what if residents of nursing homes had access to music customized to their specific tastes?

It was an experiment worth trying, thought Cohen, so that year, he began working with a nursing home in Long Island, NY, bringing in his laptop and a few iPods. He created playlists of 150 to 200 songs, individually personalized for residents with music from their youth. When they listened to their custom playlists, the results exceeded Cohen’s wildest expectations. He couldn’t believe how much music brought the residents to life.

According to Cohen, most residents in nursing homes spend their time idle; 50 percent never receive a visitor, while 40 percent face some sort of cognitive decline. That’s why music is so important to those in nursing homes: it’s a powerful medium that can unlock their memories, connecting elderly patients both to the past and those around them. Music also reduces anxiety, lifts spirits, and has been shown to help with physical and verbal behaviors, as well as increase communication and social interaction.

Michael Cohen of Music & Memory distributing headphones.

After seeing how well his experiment went, Cohen started the nonprofit Music & Memory to use personalized music to improve the quality of life and find renewed meaning and connection for those suffering from dementia, Alzheimer’s disease, and other cognitive and physical challenges. Today, Music & Memory’s program has been adopted in 5,000 health care sites globally, including the United States, Canada, Australia, Israel, Europe, the Caribbean, and South Africa. One of the org’s videos, featuring an elderly man named Henry hearing a personalized playlist for the first time, has been viewed almost 3 million times on YouTube.

Cohen’s vision is for access to personalized music to be part of standard care practices, not just in long-term care facilities, but other healthcare settings as well. By giving power over their playlists to the elderly, Music & Memory aims to empower them in other ways. “We only listen to music we want when we want and for how long we want. We want to give that same ability to our elders and others in nursing homes and assisted living facilities,” he says.

Cohen spoke with Folks about how they create playlists, how music can help with dementia, and why everyone should have control of their own personal radio dial.

This interview has been edited and condensed for clarity.

How does music unlock emotions and memories for people with dementia or Alzheimer’s disease?

Our senses of smell and sight light up a small part of the brain, but music lights up more parts than any other stimulus. When you really love a song, you just respond. Even with dementia, our emotional systems are still very much intact. Cognition may fail or short-term memory might be degraded, but music can still serve as a backdoor to the deepest parts of our brains, because it goes right to our emotional systems.

What benefits have you seen from providing personalized music to older adults?

Music is integrally tied to speech. If a guy mumbles, people assume that’s just the way it is. When he listens to his music, 25 minutes later, you can understand everything he says. I asked a speech therapist and they said it happens all the time. It helps them articulate words. They say, “So-and-so just talked to me and hasn’t said a word in nine months.”

It turns out that music also follows the same pathways as pain signals. When music is played, it diminishes the perception of pain.

It turns out that music also follows the same pathways as pain signals. When music is played, it diminishes the perception of pain. When you’re listening to your music, you don’t feel the arthritis in your wrist. In Wisconsin, they’re using music with people with advanced dementia who’ve forgotten how to swallow and may choke. When they give people their music for 10 minutes before eating, they somehow remember how to orchestrate a swallow. It helps with rehabilitation too. If an older person falls and breaks a hip, a physical therapist may be concerned that they won’t remember how to do the exercise or the repetitions because of dementia. When you give them their own music, it helps them remember. It helps reduce the use of antipsychotic medication, too.

Music helps rekindle a sense of self, and faith in their capability. It engages the brain in a positive way.

How do you create the playlists?

If people can articulate their preferences—I love Frank Sinatra. I love Barbara Streisand. I love Mozart and old hymns—we use that information to create customized playlists and then hone the lists over time.

Unfortunately, many people we work with are not able to articulate or communicate their preference, so we talk to family members. Wepose questions to unearth what they might like: “Did they play an instrument or sing in choir? Did they play music at home? Do they have any old records? What was the song the band played at their wedding or high school prom?” It helps us learn what they may like and elicit ideas.

Every facility has a laptop with an iTunes library. Everyone gets their own personalized playlist. Everyone has their own device and headphones.

So it’s a customized playlist for each person? There isn’t a general “Alzheimer’s playlist”?

Yes. They’re customized to their specific preferences and have songs that hold personal meaning.

Would this benefit people outside of nursing homes and long-term care facilities?

One of Music & Memory’s many patients, experiencing their personalized playlist.

Even if someone is home and healthy, they should have their own playlist. When my father-in-law was home and healthy, his iPod was set up with 200 songs. After he had a heart attack, his music helped relax him in the hospital. When he went to a nursing home, his music was with him all the way through.

Unfortunately, thanks to the advancement in technology, elders are losing touch with their music. They don’t know how to operate devices or download music. While they can still articulate their preferences, it’s important to help them make a playlist. We have a free guide on our website that anyone can download to help them set up a personalized playlist for a family member.

 

Did you expect that customized playlists would have such an impact?

I’m surprised. When the Henry video went viral in 2008, the Wisconsin Department of Health Services called and said they wanted to try our program. We started an 18-month study with 1,500 residents in 100 nursing homes across the state and researchers from the University of Wisconsin tracked it.  Within six months, I got a call that they were getting such positive feedback that the Secretary of State didn’t want to wait until the end of the study. They doubled down and rolled it out to another 1,500 residents and made it state policy as part of their dementia plan. Our program is now running in all 50 days and it’s public policy in 24 states.

Are there any downsides to this?

There are no real downsides. Someone might react negatively to a song. It might have a bad connection for someone so be on the lookout and remove that song from the playlist. It’s the kind of thing where the worst case scenario is: if we can’t find music that holds personal meaning, it doesn’t work. But the upside is amazing.

Essays

Two Traumatized Brains, Aligned

As I recover from a stroke, I am better able to understand and relate to my mother's Parkinson's.

My mother’s neurological conditions lurked menacingly in the background for years, growing stronger until they were impossible to ignore. By contrast, my brain was rocked by a sudden and drastic explosion that came out of nowhere. Yet through these different routes, my mother and I found ourselves selves sharing a similar experience: one that was frightening and frustrating in equal measure.

In my mother’s case, it starts with lights in her brain starting to dim, ever so slowly. First came the tremors. Slight enough almost to ignore, except we’d seen my grandfather, who had Parkinson’s, exhibit those same tremors before he died, nearly three decades before. We tried to remain in blissful denial for as long as possible, but for my mother, she soon started living the cruelest sort of déjà vu. Soon, she was mixing up her words and calling us by the wrong names, until eventually, an official diagnosis came around that confirmed what we already knew: Parkinson’s Disease, along with Lewy Body Dementia.

Of course, I had considerable sympathy for what my mother was going through, but I couldn’t truly understand. Then, I suffered a stroke, and her challenges soon became a lot more relatable to me.

Like most strokes, mine exhibited itself both physically and mentally. The first sign: While I didn’t have tremors exactly, I was unable to control my hand movements, I lost control of my right arm and hand. At the hospital, I couldn’t sign my admission forms, or even hold a pen. My entire right arm seemed to have a mind of its own, flopping around in a way that made me feel like a seal with a broken flipper.

I had considerable sympathy for what my mother was going through, but I couldn’t truly understand. Then, I suffered a stroke.

Comparatively, the cognitive issues weren’t as evident right away, but ultimately, they were worse. The stress and confusion I experience in the early hours of the stroke masked the mental impact, at least at first. It wasn’t until later, after the urgent tasks of getting myself care had been completed, that I tried to focus, and realized I couldn’t. By the time an MRI showed that my stroke had occurred in an area of the brain associated with reading, writing and language comprehension, I already knew: I’d found myself constantly typing the wrong words, and felt that frustrating sensation of having a word on the tip of my tongue with alarming frequency.

For someone who writes for a living, and reads with passion, it was a major blow. Just trying to get through normal routine daily tasks—calling to make a doctor’s appointment or writing a casual email to a friend—was like running an obstacle course lined with forgotten words and foggy thoughts. The pages of my favorite books became minefields where words and sentences I’d read countless times before lost all meaning, and stopped me in my tracks. It was like something was suddenly blocking the route between my eyes and my brain.

The author and her mother on the day of her wedding.

One day, it dawned on me: This must be what it’s like for my mom.

It wasn’t quite exactly the same, of course. My mother’s diseases were progressive, and her symptoms were only going to get worse. In my case, the future was a big question mark. As my doctors kept reminding me, the brain is a complex and mysterious entity. Each stroke is a bit different, and so too is its aftermath. There’s no surefire way to predict which of my deficits will be permanent, and to what extent. Like many stroke patients, I did see spurts of improvement as I recovered, but it’s impossible to know when you have reached the point where it’s the best it’s going to get. Still, I do have a constant series of tiny victories, and moments when I discover that something has finally become easier. But my feelings of joy in these moments is now tempered by the realization that my mother will probably never enjoy those same kinds of all-important wins.

That’s when I contemplate the difference in our journeys. While many of our current challenges may be similar, we are like the proverbial ships passing in the night. Briefly in a similar spot right now, but arriving from different origins and destined to head off into separate paths.

I have gained the type of insight into a piece of my mom’s world that can only come from firsthand experience.

Our courses may only have converged for a short time, but I consider this a rare and valuable opportunity. I have gained the type of insight into a piece of my mom’s world that can only come from firsthand experience. This greater understanding of her reality has allowed me to have a deeper understanding of all of the many challenges she must overcome on a daily basis. In turn, this has motived me to be more patient and compassionate, and to look for ways that I can offer support that might make her life just a little bit easier.

I know that I will probably never to be able to fully grasp what it’s like to be in my mother’s position. However, I am grateful for this experience that has given me even just a little more appreciation into the courage and strength she must summon every day just to do simple things many of us take for granted. I now realize how much of a warrior she really is. And the same goes for everyone else who lives with neurological challenges and serious health issues.

I certainly won’t go so far as to say I’m glad I had a stroke. But I think there’s a positive silver lining to any experience that allows us to have greater compassion towards and understanding of those around us, and the struggles they may be facing in silence. I hope we can all look for opportunities to connect with those who need our support. Often, just knowing that someone is listening and can understanding their struggles can make a huge difference.

For me, this little glimpse into my mom’s world—however fleeting it may be—has truly changed my life. And I hope this shared connection and the effect it has had on me has also improved hers, in some small way.

Essays

The Memory Queen

When Alzheimer's took my grandfather's memory, I started writing a fairy tale to make sense of our loss. But dementia cannot be defeated like a fairy tale queen.

Down the street from my grandparents’ condo in Hawaii, there used to be a nightclub with a cardboard-looking mural in front of it, depicting a woman snorkeling.

My family and I used to joke that the woman was my grandma. There was something about their similar stern, narrowed eyes, head of dark hair, and flawless light skin, despite the Oahu heat, that made the snorkeler’s face familiar. I had never seen my grandma swimming, and I had never so much as seen my grandpa in a pair of swimming trunks. But that mural was still a significant landmark, probably because trips to my grandparents’ place at that very young age usually meant that we would take a swim in their pool.

If we went to visit on a Sunday, we would shower upstairs in my grandparents’ apartment before going to our almost weekly family dinners at the restaurant of my grandparents’ choosing. Half-naked and ducking my mother’s attempts to approach me with a hairdryer, I would admire family pictures around the condo: official cruise photos in their glossy paper frames, posed family portraits, and school pictures of my sisters and me. There were almost always snacks around, which my grandparents offered constantly, despite our pending dinner, and my grandpa would often encourage me to change the television channel in the living room to something I would rather watch, even when a football game was on.

[My grandfather] loved us, he loved listening to everyone catching up, he loved my grandma. I felt privileged to have a seat at their table.

Then we would drive over to a Chinese restaurant or Japanese diner or the occasional steakhouse. With my grandparents forming the center of gravity, we would all pack into a large booth together, leaning in as they told us stories about their travels. They had a whole routine down with my grandma often enthusiastically beginning a story and my grandpa nodding in agreement beside her: a transatlantic cruise, a tour of Europe, a visit to Japan to see the cherry blossoms. One anecdote, in particular, shattered my preteen heart into a million pieces: one time, on a return flight to Hawaii, they were bumped to first-class, and found themselves sitting next to Justin Timberlake, Lance Bass, and the other members of NYSNC. As they regaled us with stories, waiters would stop by, asking for gambling tips my grandparents had picked up on their latest trip to Vegas.

Together, the two were the life of the party: my grandmother, always joking, commanding the room, a masterful raconteur; and my grandpa, her perfect complement, beaming by her side, giggling after her every punchline as though it was the first time he had ever heard it. My grandpa especially seemed to love these dinners, joyfully taking in the company of our family. He loved us, he loved listening to everyone catching up, he loved my grandma. I felt privileged to have a seat at their table.


When I finished sixth grade, my family moved from Hawaii to the suburbs of Georgia, but Oahu was always my home. In the summer months, we would return to the house where I grew up, complete with its shag carpet and ’50s flair, and resume our Hawaii lives: taking summer classes, hanging out at the mall with friends, and–most importantly of all–resuming family dinners.

Even when I left for college, I would still come back to visit whenever I could, staying with my grandparents in their condo. During the days, I would shadow my grandparents as they went about their days: watching The Price is Right with my grandfather, or watching my grandma make travel arrangements on her iPad.

In hindsight, I wonder if the midnight encounter might have been one of the first warning signs.

I was in my early 20s, and my grandparents usually let me do my own thing. One night, sneaking back into the house 2am after an evening out clubbing with my friends, I heard a rustling behind me as I took my heels off in the dark. It was my grandpa. Illuminated solely by the light leaking down the hall, he had appeared out of nowhere. My heart jumped guiltily in my chest as we studied one another. Then, I saw the bowl of Frosted Flakes in his hand.

“Want some?” he asked.

My grandparents are cool as shit, I thought to myself at the time. But in hindsight, I wonder if the midnight encounter might have been one of the first warning signs.


Long before we had a name for it–Alzheimer’s–we knew something was amiss with my grandpa.

We’d find him pacing around the apartment, moving things from one room to the next. Or we’d find him standing at the kitchen sink, washing a single spoon over and over again, which may not have even been dirty when he picked it up.

When I came to visit, Grandpa would hug me, but I could tell he didn’t know my name, or even what our relationship was.

For the most part, he was agreeable. He could pass as normal in large social situations, laughing when everyone else did, and fawning over my grandma. But if you watched him, you could see the subtle clues. He wouldn’t eat so much as push food around his plate, or offer it to others, claiming he was full despite having never taken a bite.

An old family friend said that my grandpa’s agreeable nature in the face of Alzheimer’s was a testament to what a good person he was before he was diagnosed. I appreciate the sentiment, but it always filled me with more questions. Who was he now? And what did that mean about the time we spent together? Did it mean anything at all?

Long before we had a name for it–Alzheimer’s–we knew something was amiss with my grandpa.

One summer night, my grandma gathered the relatives for dinner at a hotpot restaurant while I was in town. It felt just like it did when I was a kid. Everyone was talking loudly, telling stories about their travels. People asked me how New York was, where I’d been living for a few years, while we all cooked raw vegetables and meat slice in boiling pots of broth.

That was when my grandpa, who had been to this place before, picked up an uncooked noodle, took a bite of it, and frowned. “I don’t think I like the food here,” he said. I smiled reassuringly and showed him how to cook his noodle in the broth; no one else had noticed.

Afterwards, I couldn’t help but keep a close eye on him. I noticed my grandpa was looking through the faces of the people at the table, out of our private room. I tried to follow his gaze, but I couldn’t; I simply couldn’t understand what he was looking at.

Being so physically close to him but unable to connect was heartbreaking. I wondered if my grandpa felt that same sadness. Maybe in some ways, this is harder for us than it is for him, I thought to myself. If he can’t even remember, maybe he doesn’t understand what he’s lost.


When I got back to New York, I started writing to sort out my feelings.

The piece that started to take shape was a play. Not specifically about my grandpa, but a grandpa who suffered memory loss. It wasn’t Alzheimer’s, though. His memories were being stolen from him. There was an evil queen named Dementia, siphoning memories from David, the grandpa in the play who shared the same name as my own. And there was Mia, an estranged seven-year-old granddaughter, hell-bent on protecting David by collecting items of power from around her grandparents’ house to finally defeat the queen.

She wondered what it was like to lose all of your memories. She wanted to know how painful it would be

Mia asked all the questions I wanted to ask. She wondered what it was like to lose all of your memories. She wanted to know how painful it would be. Most of all, she wanted to know how to connect with someone she loved when he may not even know who she was.


As my trips to Hawaii became less frequent, my time there became more precious. I started spending less time with friends, and instead focused on my grandparents.

Suddenly, little moments felt very important. One afternoon, my grandma took us out for shave ice. My grandpa had a big sweet tooth, and we took our plastic cups back to the van and ate them in the car. We rolled down the windows, and my grandpa reclined his seat. I sat there, feeling the warm breeze on my face, as my grandpa finished his frosted rainbow cup, then closed his eyes for a short nap. Everyone was happy, and silent, and I couldn’t help but smile between bites.

But as much as I enjoyed these moments, I also felt an obligation to memorialize them. I tried to memorize every line of that moment–the incline of my grandpa’s seat, the expression on my grandma’s face, the exact patterns in each cup’s rainbow ice–so that the memory wouldn’t be lost in my mind, as it would be in my grandfather’s. There was an added layer of consciousness in our time, an awareness that every memory must be stockpiled for a time when I would need them for comfort.

I tried to memorize every line of that moment… so that the memory wouldn’t be lost in my mind, as it would be in my grandfather’s.

One day, my grandpa asked me if we could go for a swim together in the pool downstairs. In all our time together, he had never once shown any interest in swimming, but this time, he changed into his trunks and followed me out the door. I felt so goddamn grateful as I watched him float and bob around the water. At this point in his battle against Alzheimer’s, he sometimes wouldn’t even know who I was, yet here we were, sharing a rare moment together.

My next visit, my grandpa overheard my grandma mention I was on my way down to the pool. He perked up.

“We’ll go for a swim?” he asked, making little freestyle motions with his hands.

“Let her go, David,” my grandma said, mentioning it was time for a nap.

I went downstairs by myself, assuming he would sleep and forget the whole exchange. When I returned upstairs, however, he smiled at me.

“Swim?” he asked.

I wanted to throw up. Of all the things he remembered of our time together, that swim we had taken was one of them, and I had just shrugged off an opportunity to create another special moment we could have shared. I’d never get that opportunity back; we never ended up going swimming together again.


My play had a professional reading at the New Ohio Theatre in New York in 2013.

It was produced and directed by a coworker at the bookstore where I worked, and he assembled a top-notch cast for the occasion. I had a whole slew of professional actors at my disposal, one of which was on Broadway in Newsies, but one of my favorite people involved was the child actress playing Mia, who seemed fearless. My mom flew in for the big reading. She had never seen any of my plays, so it was a special occasion. I also had about 30 friends and colleagues in the audience, hearing my most personal work read out loud.

When the show was over, I received a lot of congratulations from the cast, crew, and audience. My mom really enjoyed seeing the process of a performance getting up on its feet. Some of my friends admitted to tearing up during the show.

But in the days that followed, I found myself getting a lot of feedback from colleagues. One note, in particular, came up consistently: Is this a kid’s show, or an adult’s show?

Mia conquered the fairy tale evil, but the very real consequences of Alzheimer’s persisted.

I was surprised. Despite the fairy tale plot, I’d never seen the play as being for kids. I saw Mia’s journey as an idealistic take on a disease that makes idealism impossible. It represented my hope that things maybe could get better, that there is something–anything–productive to do in the face of Alzheimer’s senseless loss.

The climax of the play occurs when Mia has collected all the items needed to defeat Queen Dementia. By recalling her favorite memories of her grandfather with these totems in hand, she is able to vanquish the Queen, and reclaim the key to the box where Dementia has hidden all of David’s memories. It rests on the family mantle, but when Mia reaches for it, David enters the room, startling it out of her hands to break open on the floor.

For a fleeting moment after the box breaks, David looks at Mia. There’s a flicker of recognition. But then Mia’s mom and Grandma come running into the room. The recognition is gone. Mia conquered the fairy tale evil, but the very real consequences of Alzheimer’s persisted.

Reality came crashing down with the locked box. All Mia’s hard work had culminated in a moment of clarity, but it had opened like a wound–pulsing and bright–and then healed over in the blink of an eye.


The news of my grandpa’s passing came quickly.

My grandparents were supposed to meet my parents in Vegas, but right before the trip, my grandpa was suddenly admitted into a hospice, By that weekend, he was gone. Spending the weekend with my boyfriend’s family for a barbecue, I remember crying outside a New Jersey Chili’s upon hearing the news. At the barbecue itself, I separated myself from the crowds, walked down the street to the boardwalk by the house, and wailed out my grief into the reeds lining the water, hugging myself as I did to keep myself together.

I had no illusions about how my grandpa’s life would end. I had been preparing myself for years for that call, stocking up my vault of memories. But as I gasped for air in the night, I realized that there had been part of me still believed the fairytale: that it was possible to vanquish Queen Dementia, and that I would be able to see Grandpa one more time, as he had been, if just for a minute.


I flew out for the funeral. With my work schedule and flights, I ended up in Hawaii for about 36 hours.

My mom and sisters and I stayed at an AirBnB within a few minutes of my grandparent’s condo which was so cramped, I had trouble sleeping. In the dark, I thought about that nightclub mural of my ‘Grandma’ snorkeling, and how the last time I saw it, they’d physically torn her out of it; only the ocean and fishes remained around the snorkeler-shaped gap. She was gone, but the absence of her was palpable. My grandpa, my childhood memories of going to the pool, that mural– everything was subject to change and loss. And I was the sea, feeling the gaps left by the things time had stolen from me.

At the funeral, I was given the task of handing out programs. On the outside was a photo of him smiling next to a giant spiral-cut, fried potato. It was a perfect choice–an image of the joy my grandpa got from the simplest things.

My grandpa, my childhood memories of going to the pool, that mural– everything was subject to change and loss.

The funeral itself was short but sweet. They played Taps on a bugle along with a military flag presentation, which I knew my grandpa would have loved. It reminded me of how, when my grandparents visited me in New York, he would grunt in appreciation during the pauses between lyrics in Broadway shows.

After the funeral, we all went to a Chinese restaurant for dim sum. There were faces there I hadn’t seen since my childhood.

When we walked in, my grandma was giving the waiters instructions, rearranging tables to make sure everyone was accommodated. Amidst the pinging of teacups, clinking of silverware, and whirring of Lazy Susans, people shared stories about my grandpa, and talked about things about him they’d miss.

But even there, life was moving on. At one point, during a talk about the latest movie releases, my Grandma perked up. “What’s Sausage Party?” she asked.

The table erupted in laughter.

I suddenly felt very thankful. We all missed my grandpa, and that loss will never go away. But the family will live on. Here, with all these people who loved and remembered him, something opened up, bright and pulsing. For a moment, even without him there, I was home again.

Creative Commons photo from Debs on Flickr.

Essays

No Silver Lining

My husband's slow descent into delirium had no upside, but it failed to diminish my love for him, or the effect he'd had on my life.

It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.


I’ve never believed that every cloud has a silver lining or as the German philosopher Nietzsche said, “That which does not kill us, makes us stronger.”

My husband’s debilitating dementia had no silver lining, and it made neither of us stronger. John’s decline was marked by suicide threats, crying jags, and psychotic episodes that landed him in the geriatric-psych unit for weeks. Once he even managed to hurl himself out of a reclining wheelchair.  He knew he was losing his mind, and he objected.

By the time we first started dating thirty-six years before, I’d had my share of relationship failures, including the breakup of my first marriage, which I felt so guilty about that I split myself into two people: the one who wanted to stay, and the one who wanted to leave. The two argued incessantly, and I was always trying to make a quick getaway in the hope that I could escape one of them and find some peace of mind. The one who wanted to leave turned out to be my better half, and ultimately we both left my husband.

John and Pamela, shortly after they met.

In contrast, John, an NYU professor seventeen years my senior, evoked the image of a steady ship in calm waters with his tall person, confident stride, and ever-present briefcase.

After we’d been dating for a few months, John left for a fly-fishing trip out west. I missed him terribly.  Then late one night, the telephone rang in my apartment. It was John, calling from Last Chance, Idaho.

“I’ve been thinking about you,” he said. “I’d like to spend more time with you.  In fact”—there was a pause on the other end of the line—“I’d like to spend the rest of my life with you.”

I was speechless, terrified that this was too good to be true.  I panicked that I would ruin our relationship by panicking, and he would get sick of my panic and leave me.  This created more panic.

All the same, that August we got married and moved into a 5th floor Chelsea walk-up.  The panic moved in with me.

One day, shortly after we got married, John found me sitting on the apartment stairs crying. He was stumped. What the heck was I doing sitting there crying about nothing?

Eventually it occurred to me that John wasn’t going to get scared off by my panic attacks.  He loved me whether I panicked or not.

“You’re playing to an empty house,” I told myself. “Why don’t you just relax and enjoy the relationship?”

“Why don’t you just relax and enjoy the relationship?” That was some of the best advice I ever got.

That was some of the best advice I ever got.

From the beginning, John expressed unshakable confidence in my dream of becoming a writer.  Not only did he think I would be a writer, he believed I already was one, even before I demonstrated the talent or tenacity.  That someone believed I could actually accomplish anything was a novelty for a girl who had grown up with a conspicuous lack of abilities or even intelligence, at least that anyone took note of.

I spent most of my time as a child obsessing about the unsettling fact that I had been born, which meant that one day I would die.  When my parents took me to see a movie about the Titanic, I became alarmed by how swiftly and haphazardly death could come.  One minute you’re singing and dancing, and the next you’re drowning in the North Atlantic.

Kindergarten came as a rude interruption to my existential preoccupations, and I almost flunked out.  My mom said I was dumb, like her which was sad because she was more confused than dumb.  My teachers said I needed to adjust, which never happened, and my first husband, whom I married at nineteen, said I was an idiot to think I could ever be a writer.

A picture of John and Pamela, after John won the NYU Distinguished Teacher’s Award.

With all my worries about getting shipwrecked in the icy Atlantic, bad grades, and a husband who assaulted my intellect on a daily basis, life was a challenge.

Until John.  John not only believed in my dream of becoming a writer, he believed in me as a person, in my innate goodness.  If faith is the evidence of things not seen, then he had more than confidence in me – he had faith. And because of his faith, I became the person he believed me to be (almost) and the writer he believed I would become.

Then John had a stroke. Now, I had something concrete to panic about.

My efforts to keep John alive and safe felt like trying to outrun a truck that was careening downhill. The stroke was followed by multiple falls, fractures, seizures, and surgeries. Eventually he could no longer walk.  The cost of hiring round-the-clock nurses ($18,000 a month) was out of reach, so I placed John in a memory care facility close by, and visited him every day.  I brushed his teeth, played Bach and Jessye Norman, exercised his legs, and reminisced about the past.  When our daughter, Annelise, talked to him about college, his face lit up, if only fleetingly.  But our separation made me feel like I was leaving this man who had always stood by me, or that we were leaving – or losing ­–each other.

“I couldn’t find you,” he’d cry, when I visited him. “I didn’t know where you were.  I didn’t know who I was.”

Now he was the one panicking.

For John, I existed in a dream: an apparition of memory, love, and self, miraculously appearing out of nowhere, then vanishing just as mysteriously.

Sometimes I’d hold his hand. “You’re magnificent,” I’d say.  And then he’d have more than himself for just that moment; he’d have us.

As time passed, I witnessed fragments of his mind fall and shatter, like pieces of an antique lamp. He was a brilliant man, and some of the pieces glittered.

As time passed, I witnessed fragments of his mind fall and shatter, like pieces of an antique lamp.

Late one night the telephone startled me awake.  It was a nurse on John’s floor.

“John’s screaming and we can’t calm him down,” she said.  “Will you try talking to him?”

A few minutes later the nurse handed John the phone.

“I’m not even French and they’re trying to kill me!” he yelled.

Oh my God, I thought, he’s in the French Revolution, which wasn’t surprising since he taught 18th Century literature and history.

I did not succeed in calming him down that night, or bringing him into any other era, including the present.

Ultimately, everything faded from his mind: his passion for teaching, his joy in his students’ success, people and places from the past.  But when all that had vanished, he still knew me and our daughter.  The details of our lives – where we lived and what filled our days – eluded him, but he knew who we were and what we were to him.

Still I was not prepared to call that a silver lining. A titanium lining, at best. Titanium, I knew, blended strength and practicality with a high melting point: just like me, since I’ve been known to blow a fuse now and then.

“Are we married?” I asked him one day, after yet another stint in a geriatric-psych hospital.  It had been two years since he’d moved to the memory facility, and he was fading fast.

John gazed at me fiercely, in spite of the haze of dementia and truckloads of tranquilizers and anti-psychotics he was on.

“Absolutely,” he said.

Three days later, he was dead.

His death brought new questions and dilemmas.  How could such a tremendous (though diminished) personality simply vanish?  Could he still see me somehow? Would we meet again, on a trout stream one summer evening: he casting a fly, me reading on a grassy bank nearby?

Our daughter Annelise rests her head on John’s lap, shortly before he died.

A friend told me her late husband returned as a thrush one spring morning, and trilled a song to her from the treetops.  Was the bird singing outside my window, John?
At John’s burial, our friend Gary, who knew John years before I had, said a few words.

“When I met John he was a kind and serious man, but emotionally heavy,” he began.

Old friends who had gathered around the gravesite nodded knowingly.

“In the periodic table there are transitional metals like silver, gold, ribidium–heavy metals,” Gary went on.  “When John met Pammy, his soul lightened.  Nitrogen, hydrogen, helium – these are the elements he inherited when he fell in love.”

The word “helium” brought laughter and recognition. But no Nietzschean strength. I wondered when I would recover.

Yet, with time, John’s confidence in me, his very essence, has became a part of me, of who I am and how I make my way through the world.  Gradually I have grown more serious, more solid.

I still panic about nothing, but every once in a while I catch a glint of those transitional metals Gary spoke of at the gravesite that day: gold, rubidium, and, yes, silver.

Q&As

This Retired Pharma Exec Is Trying To Cure Alzheimer’s In The Black Community

After his mother got Alzheimer's, Willie Deese used his money and connections to confront diversity issues within the pharmaceutical industry head on.

A study of more than 270,000 individuals, published last year, suggested that 38 percent of blacks aged 65 are projected to develop Alzheimer’s. And as the overall U.S. population grows older, this neurological illness mainly affecting aging people is expected to become a bigger, more costly problem for the medical community, patients and their families. It hits blacks harder than any race of people: African-Americans are twice as likely as whites to develop Alzheimer’s.

Willie Deese.

Willie Deese, a retired executive vice president for prescription drug-maker Merck, knows how hard Alzheimer’s can hit black families. His 88-year-old mother has the incurable brain disease. That’s why a good chunk of the $1 million that  Deese donated in 2016 to his historically black alma mater, North Carolina A&T State University, went to its groundbreaking center for researching Alzheimer’s in African Americans. He’s hoping that his money and industry connections can help finally find a cure for dementia, as well as explore the role that race can have in getting patients proper treatment.

These days, from the Chapel Hill home he shares with his wife, the native North Carolinian spends his retirement serving on corporate boards and advising African Americans who are interested in pharmaceutical industry careers. And he stays busy talking about the issues surrounding clinical trials and who enrolls in them.  He continues to push drug makers and everyday people, alike, to do their part to ensure that prescription drugs and other medical interventions generally are tested on both genders and every race.

Folks sat down with Deese to talk about his mother, his career, and the ways that pharmaceutical companies can be more inclusive.

When did you first suspect that your mother was ill?

About seven years ago, I noticed that she was repeating herself and forgetting things, like how to get to the room where she was staying while visiting us. I said to my wife, “Something is just not right.”

Since then, my mother’s Alzheimer’s has progressed. For almost everyone who has this disease, it progresses.

Today, she lives in a facility that takes very good care of Alzheimer’s patients. If she had her druthers, she would be in her home. But she can’t live there safely without round-the-clock care.

Since your mother has gotten sicker, how has your mom-son relationship changed?

My mom and dad both had close relationships with all nine of us children. We grew up on a farm with a lot of love, a lot of laughter, a lot of caring … in very ordinary ways.

When I was working for Merck, I’d talk to my mother two or three times a week. If she needed something done, input or advice, as she aged, she tended to count on me and my older sister–the oldest of us and the one who has assumed responsibility for most of my mother’s care–as the people she called first. It was just kind of understood that, if she needed something, she could count on me.

How do you deal with your mother’s declining health? How does it make you feel?

Sad.

It’s tough to watch. I’m 62. When you’ve known your mom all of your life and remember her at her best, all of this is difficult. She used to have a very, very sharp and engaged mind.

When a loved one has Alzheimer’s, it’s as if the whole family has Alzheimer’s. In some way, shape or form, it catches everyone. And it is not a positive experience. So, the family also goes through these tough stages. Denial, resentment, anger.

When a loved one has Alzheimer’s, it’s as if the whole family has Alzheimer’s.

For me, the harshest moments are watching my mother mistreat my sister, who has a master’s degree in social work and is the person who has been closest to my mother and provided the most support. My mother can use some harsh language, at times. She can be totally disrespectful in her interactions with my sister. My sister personalizes some of that. It hurts. But my sister knows these are not things that my mother can control. She says, “This is my mother. I have to take care of her.”

I’ve received significantly less of that acute misbehavior from my mother. But I do understand and feel the hurt. Despite those behaviors, which many Alzheimer’s patients exhibit, you have to continue to love them and care for them and give them more time and attention.

How do you account for the difference in how your mother now treats you and how she treats your sister?

Mrs. Deese, Willie’s mother, who has Alzheimer’s.

From a clinical perspective, I cannot tell you why that is. I can tell you–from what I know about this disease–that the differences here are normal. They may grow out of the fact that patients spend more time with primary caregivers than others. I have no more insight than that.

How does Alzheimer’s affect your mother at this point?

There are days when her mind is functioning in a normal way. You see those slivers of light, when she is her old self. She is having a conversation, remembering what she said five minutes ago. She can string thoughts together. And all of this gives you the momentary, false feeling that she is going to come out of this. That’s not going to happen.

The repeating, forgetting, confusing things, all of that comes back. With each passing day, those things worsen.

There are days when her mind is functioning in a normal way. You see those slivers of light, when she is her old self.

What was your mother’s  initial response to being diagnosed with Alzheimer’s?

Largely, denial. Most people with Alzheimer’s will go through a long period of denial and almost anger.

My mother had always been very mentally sharp and keenly aware of her surroundings. Even now, she knows that something’s not right with her mind. And that awareness—that things have changed, that things are different from what they used to be—also is a symptom of the disease.

She’s lucky to be in a specialized facility, yes?

That’s right. A lot of what happens, or doesn’t happen, for Alzheimer’s patients falls along socio-economic lines. Particularly in the African American community … many people with the disease often are alone, fending for themselves and trying to take care of themselves as they deteriorate. They forget to eat, how to comb their hair and brush their teeth. They become a significant health hazard to themselves. Imagine leaving the oven or a stove burner on, or confusing where something goes in the house.

A lot of what happens, or doesn’t happen, for Alzheimer’s patients falls along socio-economic lines.

Your family’s resources and resolve have meant much in your mother’s care? What about those who are less well-off?

It’s not easy to house and care for Alzheimer’s patients, especially as they get older and require round-the-clock care. I would guess that it costs anywhere from $30,000 to $100,000 annually to provide that level of care. It is inherently expensive. And government assistance for Alzheimer’s care is extremely limited.

Why do you suggest that more African Americans than people of other races are battling this disease alone?

This is not an empirical fact, but my guess is that we tend to be underdiagnosed. In some cases, it’s not even recognized that a person has Alzheimer’s. That’s partly because African Americans, I think, have a harder time talking about illness that affects our mental state, the brain.

How did you get into the pharmaceutical business?

After 16 years in the computer industry, I was recruited into the pharmaceutical industry, not knowing a lot about it. They liked that I had experience in procurement and operations management. Once inside the industry, you learn a lot about drug research, about the way the industry conducts clinical trials … and about who gets into trials and who doesn’t. Your learn about which communities are willing to be a part of trials and which are not, and why some African Americans might shy away. They’ve been less likely to participate because they are aware of such things as the Tuskegee experiment [ed. – in which federal researchers investigated but deliberately did not treat syphilis in black Alabama men. However, fewer African Americans now see that historic tragedy as a reason to avoid enrolling in medical trials, according to more recent research].

You’ve also been pretty vocal about the need for more people of color in clinical drug trials and other medical trials and research. Why?

Years ago, the industry did not actively seek to include people of color in clinical trials. It’s doing a better job today, though there still is plenty of room for improvement.

Equally concerning is whether there is enough willingness among people of color to participate in these trials. We have to find a way to encourage the enrollment of people who are African American and other ethnicities in these trials. As we learn more about the human genome and biomarkers, it is becoming increasingly clear that medicines can be designed and personalized based on your genetic make-up. If African Americans and other races are not in those trials, we are missing an important part of the data that determines the efficacy of drugs.

We have to find a way to encourage the enrollment of people who are African American and other ethnicities in [clinical] trials.

It’s a two-way street. We have to drive that point home. Diversifying the races of people participating in medical research will take some time—but it cannot take forever. Disease does not take a day off.

What are some ways of creating a better mix of the people enrolled in clinical trials?

You do it through education and public awareness. I believe that people will enroll in clinical trials when they learn about why it’s important to participate from people they know and trust. Pharmaceutical companies need to reach out to those communities, and touch people who have influence. And our [historically black] medical schools, the Howards, the Meharrys have a role to play in helping to educate.

Our community has not been educated as well as it should be about the relative risks and benefits of trials; that’s true of Alzheimer’s trials and trials of [interventions] for other illnesses. It’s a question of both whether you know the people who are talking about this and whether you trust what they are saying. Maybe there is a specific aspect of the care or research that you may not trust. Having someone you know and trust talk about that gives you a greater sense of trust and of safety.

Were those hopes—and your mother’s battle with Alzheimer’s—the main reasons you are helping to fund North Carolina A&T’s Center for Outreach in Alzheimer’s, Aging and Community Health? It’s studying the genetics of Alzheimer’s but also providing training and other support to caregivers.

When it’s your mother or dad or grandmother, the Alzheimer’s statistics become personal. There is some scientific belief that heredity may play a role in the disease.

That’s one more example of why we, people of color, have to be willing to invest our resources and participate in clinical trials. That has to happen if we are ever going to have a chance … against this disease, which, like mental illness, can carry such stigma in the African American community. There’s no need for the stigma.

When it’s your mother or dad or grandmother, the Alzheimer’s statistics become personal.

If we choose not to talk about this, if we choose not to acknowledge the negative impact of Alzheimer’s, then 10 years from now, 15 years from now …  it has the potential to be catastrophic in our community and a huge financial drain on the country.

Do you find it interesting that your career would provide you with such insight on your mother’s illness but, also, what medicine, in general, may mean for different communities?

I didn’t expect this could happen to my mother. It was just not on my radar. But when things happen, if you have an ability, knowledge or resources, then, you are called upon to use what you have to do what you can to help. That governs the way I live my life.

If my mother had to get this disease for me to have a keen interest and to want to see it eradicated, then, I am OK with that.

Essays

Warding Off Alzheimer’s With Tumeric And Brain Games

When my mother was 59, she started experiencing the first symptoms of dementia. Now nearing 50 myself, I'll try anything to stave off the same fate.

Every time I misplace my smartphone or forget where I park my car, or blank out on a celebrity name, I flashback to my mom.

One of the earliest signs that Alzheimer’s was creeping into my mother’s life was the heavy pot of leftover pasta she would mysteriously place in the garage. As the disease progressed, she developed a habit of triple checking her bright orange Le Sportsac pocketbook every few minutes to make sure she had everything (lighter, Evian spray, notebook, coin purse), cursing in her mother tongue of French when something was missing. Eventually, she began to get lost inside our two story Cape Cod home in Long Island, so I wrote signs with arrows (<— bedroom, —> living room) so she could find her way around.

By 59, she moved into a nursing home. She passed away at 70. It’s why, as I inch towards 49, any minute lapse of memory makes me cringe.

The AD statistics hover in my psyche. There are 5 million people who suffer from Alzheimer’s Disease in the country, and 5 percent of those have early-onset Alzheimer’s Disease (diagnosed before age 65), which is more likely to be hereditary. I’ve seen Alzheimer’s close up, and it scares me.

I’ve seen Alzheimer’s close up, and it scares me.

So I do what I can do to keep my brain and body healthy and strong. I power walk almost every day. I learn new skills that go against my natural introversion. I joined a Toastmaster’s group. I borrowed Hindi language CDs from the library. Every year I resolve to meditate every day, but I abandon after a 4-day streak. I tried a Bollywood Dancing class. I add turmeric to my tuna salad and soup. I ordered sage tea online. I tried adding coconut oil, bulletproofing my coffee the lazy way, but after two days of bleccch, returned to half and half. I quit Diet Coke cold turkey, because of a study linking drinking diet soda with increased risk of dementia, Diet Coke was my drink of choice. I miss it though.

I’ll admit to clicking on spammy links that pop up in my newsfeed touting supplements that will give me super brainpower. I skim the headlines and close out. But when a recent study proved that an online speed training game from BrainHQ had the possibility of “cutting the long term risk of dementia in nearly half,” I signed up.

I first tested the waters with their free games. My scores were humiliating.  The categories are memory, intelligence, brain speed, and navigation. Memory was my weakest. I was around 20 percentile for my age according to their high tech calculations. Was this brain fog or the beginning of my brain’s demise? As I learned that shrinkage of the hippocampus is one sign of oncoming dementia, I set out on a mission to make the hippocampus part of my brain happy and healthy. I upgraded to the premium version, but eventually, I quit: I just don’t want to pay the $14 a month. But I feel guilty about it.

If I end up sharing my mother’s fate, I could be checking into a nursing home in the next ten years. The thought buzzes by me sometimes when I drive by one of the memory care centers in my neighborhood. Well, at least I’d be close to home.

Sometimes, the sense of the inevitable is so strong, I have to remind myself that getting Alzheimer’s myself is far from certain.

Sometimes, the sense of the inevitable is so strong, I have to remind myself that getting Alzheimer’s myself is far from certain. All three of my mother’s sisters lived well into their eighties with other aliments, but no dementia. My last remaining aunt is 99, and lives in an assisted living facility for retired nuns in France. She tells me that her bags are packed, her passport is ready for Heaven, but whenever she knocks on the door, God slams the door in her face.

If there was only a way to know for sure I’d get Alzheimer’s. Maybe then, every time I forget my pocketbook, I wouldn’t have an existential crisis. But would it actually change anything? Would knowing that I had the APOE E4 Gene, which triples one’s risk of Alzheimer’s, make it easier for me to meditate at 5am, or renew my BrainHQ subscription, or stop looking longingly at the Diet Coke in the supermarket? And even if it did, would it make any difference?

My mom had a French woman’s mélange of good and bad habits. She smoked most of her life, drank red wine regularly, snacked on pecans and Camembert, loved painting landscapes, shunned processed food, drank coffee, and practiced yoga and meditation. Was it really one of those habits that doomed her? And, conversely, could any combination of her good habits really have saved her?

Recently, a doctor of mine introduced a new wrinkle: did my mother really have Alzheimer’s? She was never formally diagnosed, and she had two very serious concussions due to car accidents. Could her dementia have been caused, or at least sped up, by the brain injuries she experienced in her youth? If so, my risk of Alzheimer’s is no more or less than average. But does it really matter? As the philosopher Michel de Montaigne wrote, “My life has been filled with terrible misfortune; most of which never happened.” Alzheimer’s can still be my burden, even if it doesn’t run in my family at all.

Q&As

What To Do When Someone You Love Has Alzheimer’s

Alzheimer's is often called the "family's disease." There's a reason for that, says Ruth Drew of Chicago's Alzheimer's Association: with dementia, the whole family's in it together.

Over the last year or so, a relative of mine has become more forgetful. She doesn’t recall things people tell her just minutes before, and becomes frustrated when she feels that people are condescending to her. Yet without their intervention, she forgets things both trivial and profound–whether she has eaten breakfast, for example, or whether her aunt has died.

Although she has not been diagnosed yet, signs point to some sort of dementia, possibly Alzheimer’s. They call dementia a “family disease” because it affects not just the individual, but the family: studies show that supporting someone during this time is time-, energy-, and heart-consuming. But we’re all in it together, so while we wait for more tests, my family tries to support her as best we can.

I, too, am trying to prepare to do my part. But what can I do? What can I say? How do you help a person improve their quality of life while maintaining your own mental and physical health in the onslaught of a disease like dementia?

I didn’t know, so I asked an expert for tips on how to guide families in becoming effective, loving caregivers.

Ruth Drew, director of Family and Information Services at the national office of the Alzheimer’s Association in Chicago

Ruth Drew, a licensed professional counselor, is the director of Family and Information Services at the national office of the Alzheimer’s Association in Chicago. There, she leads the work of The Contact Center, a nationwide 24-hour helpline offering information and counseling to people affected by Alzheimer’s disease.

Drew has a personal interest in the work of the Alzheimer’s Association because her late grandfather had the disease. She told me more about what I could expect, and how I could be there for my loved one as she voyaged into the foggy, undiscovered and unpredictable world of dementia.

The goal is to be so much more than caregivers or well wishers for family.  What I’ve learned from Drew’s insight is to not only show love and empathy, but to also practice gratitude each day; gratitude for the one life we have, and gratitude to be a source of strength when our loved ones are losing theirs.

Why is dementia referred to as a family disease?

A diagnosis of Alzheimer’s disease or other dementia impacts the entire family. It exacts a considerable emotional, mental, physical and financial toll on families, particularly primary caregivers. At its core, families experience the gradual decline of someone they love. This leads to feelings of loss, grief and sadness.

Are scientists finding that families who provide support and/or who are educated on the disease have a positive impact on people with dementia?

Being an informed caregiver is one of the greatest gifts you can give to a person living with Alzheimer’s and other dementias. The more you know about the disease, its progression and what to expect, the better prepared you’ll be to navigate its challenges. Since both Alzheimer’s and dementia are progressive diseases, the needs of the person living with the disease will escalate over time. Anticipating and preparing for the changes, including securing additional help as needed and availing yourself to available resources, is beneficial to both the person living with the disease and their caregivers.

What are some of the first steps a family can take when learning a loved one’s diagnosis?

Receiving a diagnosis of Alzheimer’s is never easy — it’s life changing, not only for the person receiving the diagnosis but for their loved ones as well. There is no one right response to a diagnosis, but it’s important for family members to be supportive during this difficult time. While the individual living with the disease is the only person who can change how he or she feels about the diagnosis, you can share information and provide support to help with the process of acceptance. This can include helping a loved one identify new priorities in the wake of a diagnosis and steps you can take together to move forward, finding new ways to live a positive and fulfilling life. In addition, it’s important to discuss more practical matters such as legal, financial and long term care planning. While these conversations can be difficult, providing the person living with the disease a voice in these important issues can help guide future decisions.

What should family members be mindful of when trying to communicate with a relative who may lose their train of thought or become frustrated from the inability to communicate effectively?

Communication with a person with Alzheimer’s requires patience, understanding and good listening skills

Communication with a person with Alzheimer’s requires patience, understanding and good listening skills. In the early stage of Alzheimer’s disease, an individual is still able to participate in meaningful conversation and engage in social activities. However, he or she may repeat stories, feel overwhelmed by excessive stimulation or have difficulty finding the right word. Here are a few tips for successful communication:

  • Don’t make assumptions about a person’s ability to communicate because of an Alzheimer’s diagnosis. The disease affects each person differently.
  • Don’t exclude the person with the disease from conversations with others.
  • Speak directly to the person if you want to know how he or she is doing.
  • Give the person time to respond. Don’t interrupt or finish sentences unless he or she asks for help finding a word or finishing a sentence.
  • Explore which method of communication is most comfortable for the person. This could include face-to-face conversations, email or phone calls.
  • It’s OK to laugh. Sometimes humor lightens the mood and makes communication easier.
  • Be honest and frank about your feelings. Don’t pull away; your friendship and support are important to the person.

How should family members respond when their loved one exhibits troubling behavior?

When a person [with dementia] behaves in a way that doesn’t make sense… we need to remember that their behavior makes perfect sense to them.

First, it is important to remember that all behavior is communication. People with Alzheimer’s or other dementias often have difficulty communicating their thoughts and feelings in the usual ways. When a person behaves in a way that doesn’t make sense to a family member, we need to remember that their behavior makes perfect sense to them. Instead of dismissing the behavior, do a little detective work to try to understand. People with Alzheimer’s sometimes become anxious or aggressive. They may repeat themselves or withdraw from activities they used to enjoy. When this happens, try to figure out what they are communicating. Are they in pain, cold, hungry, sad, bored or lonely? Are they bothered by something in their environment? Sometimes we can decode the situation and help. Even when we can’t figure it out, we can respond with kindness and respect knowing that it is always worth the effort.

How important is it to establish a daily routine, or does it depend on the person and diagnosis?

A person with Alzheimer’s or other progressive dementia will eventually need a caregiver’s assistance to organize the day. Structured and pleasant activities can often reduce agitation and improve mood. Planning activities for a person with dementia works best when you continually explore, experiment and adjust. Before making a plan, consider the following:

  • The person’s likes, dislikes, strengths, abilities and interests
  • How the person used to structure his or her day
  • What times of day the person functions best
  • Ample time for meals, bathing and dressing
  • Regular times for waking up and going to bed (especially helpful if the person with dementia experiences sleep issues or “sundowning”

Make sure to allow for flexibility within your daily routine for spontaneous activities. As Alzheimer’s disease progresses, the abilities of a person with dementia will change. With creativity, flexibility and problem solving, you’ll be able to adapt your daily routine to support these changes.

Are there any specific activities a relative could to do with a patient with dementia that you’d recommend in the quest to delay the progress of the disease or improve their condition?

A person with Alzheimer’s or other dementia doesn’t have to give up the activities that he or she loves.

Staying physically and mentally engaged is an essential part of living. A person with Alzheimer’s or other dementia doesn’t have to give up the activities that he or she loves. Many activities can be modified to the person’s ability. In addition to enhancing quality of life, activities can reduce behaviors like wandering or agitation. Focus on activities the person has always enjoyed and adjust, as needed, to match the person’s current abilities.

For small families, those who live far away, or those who are unable to provide a lot of support, what are some resources available to help improve the quality of life of a person dealing with dementia?

While long-distance caregiving can be challenging, there are resources to help. Learn about what is available in your community by contacting your local Alzheimer’s Association at 1-800-272-3900 or using its online Community Resource Finder. You can also use Alzheimer’s Navigator, a free online tool that helps evaluate your needs, identify action steps and connect with local programs and services.

Creative Commons photo at top shot by Jeremy Hiebert.

Q&As

How To Help A Loved One With Dementia

Lori La Bey, founder of Alzheimer's Speaks, explains why we shouldn't try to capture the people we love in a freeze-frame, even at the end of their lives.
Photo of Lori La Bey, an advocate for care givers.

Photo of Lori La Bey, an advocate for care partners.

Lori La Bey has spent almost the whole of her adult life learning to live graciously with a condition that was not her own. For the majority of the three decades that her mother lived with dementia, Lori and her father acted as her primary care-partners, silently joining the more than 65 million Americans that provide daily assistance for their aged, chronically ill or disabled loved ones. In 2009, Lori founded Alzheimer’s Speaks, an organization whose efforts turn around the work of challenging the stigma of dementia and offering comfort and acceptance when crisis threatens.

It seems a unique cruelty that some are chosen to watch, and intimately attend to, the decline of their dearest relatives. Yet this is not how Lori tells her story. She joined us at Folks to discuss finding humor and peace in care-partnering: the work that chose her.

Tell me a bit about your earliest work as a caretaker.

I actually choose not to use the term caretaker. It’s evocative of a kind of lopsided relationship where only one person can touch the life of the other. My work was as a care-partner, because I was a daughter and a friend before all else. What I did was relational. There was give and take.

See, my mom had dementia for thirty years, more than half of my life. So I’ve spent a lot of time learning to live with this disease graciously. At first, our family really struggled knowing what was going on, as the doctors failed to diagnose her for ten years. They kept dismissing it as hormones, and yet when we finally reached out to a neurologist he said that she had the mental capacity of a three-year-old. My mom knew all along that something was wrong, and she would even joke that “these ain’t my girlfriend’s hormones.”

Wait, your mom knew?

Lori and her mom enjoy some music.

Lori and her mom enjoy some music.

Most people with dementia do. For my mom, there was a moment where she could no longer tell the time, but she wouldn’t tell people. When you talk to people with dementia, they always mention their work-a-rounds. For instance, my mom could tell the time by what was on TV. For the longest time, we couldn’t figure out why she would flip out if we changed the channel. Of course, those were the faces she was familiar with. New faces indicated a different hour of the day, and we just didn’t know it. She never told us about these kinds of things. They were her work-a-rounds, her attempts to be safe and to feel comfortable. As a family, it took us a long time to figure this out. We really didn’t even know to look for it.

After her diagnosis, did things improve?

Honestly, we just didn’t find much help. The only thing we knew about was the Alzheimer’s Association. Back then, there wasn’t a lot of support that was given to families and homes, and this is still true in some cases today. You could donate money and go on a walk, but that was about it. There weren’t product services or tools to help you actually live in the home independently. There was no sense that we were building a community.  It was more of a bandage approach: just fix it and move on.

The focus of my work from day one has been to raise people’s voices so that they could find the services and community they needed to not feel so isolated.  Care-partners need the freedom and empowerment to help remove fear from their work. Alzheimer’s doesn’t always look pretty. But you know what, our lives weren’t that pretty before Alzheimer’s hit. We all have our ups and downs, but when you enter a time of crisis you always think that things were perfect before. That’s what we do.

Why do we hold on to these false perceptions of our own lives?

Well, it’s easier for us to deal with. We don’t have to go into a new mode. We don’t like change. When someone gets diagnosed with dementia, we remember them at their pinnacle and we don’t want to give that up. We try to force them to be that person. They might have never been that person for years, but we go back in time.

I remember going through old pictures and finding an image of when I got married. I was in it with my mom and dad. When I saw it, I chuckled because I realized my dad’s dead, my mom’s got dementia, and I’m divorced. Meanwhile, I’m still trying to make my mom that person she was when I got married 30 years go. We all do this, but we must be more conscious of it. We have to stop “freeze-framing” people in time when the rest of the world continues to change.

Lori's mother and daughter spend Mother's Day together.

Lori’s mother and daughter spend Mother’s Day together.

 It seems as though this would lead to tension in any relationship. What’s the effect of refusing to believe that your loved one is sick?

 There’s a panic for people with Alzheimer’s or dementia that they make their loved ones anxious. This brings them to focus on care for others instead of themselves. They long for a sense of belonging, and they desire to restore things to what they once were. You put the pressure of getting things back to normal on a person that is really sick and it’s devastating.

So one of the things that most frustrates people with early onset Alzheimer’s or cognitive impairment is when people say to them, “Well, you look okay. You seem the same.” This infuriates them. It’s as though their friends and family really don’t want to believe that they have the symptoms to begin with because they look okay. They’re not broken they’re not bloody and they’re not wearing an oxygen tank. They look exactly the same, but they’re suffering.

 Is there a kind of joy that comes with allowing your loved one, and yourself, to change?

My mom became the safest person I could ever go see. As the disease progressed, she lost her ego. She had no need to judge. No matter what was going on, I could just be with her and be who I was. I didn’t need to hide it anymore. I didn’t need to hold back my emotions and feelings. She allowed me to be who I was in any given moment. Whatever the emotion I could trust her and be my true self. I knew that she would still love me and still be there. It was something unexplainable. My mom was the safest place to be my authentic self. I didn’t have to meet expectations because she didn’t have any.

As the disease progressed, she lost her ego… No matter what was going on, I could just be with her and be who I was.

And others held on to an old vision of your mom?

 One of my mom’s dear friends actually refused to visit her because it was too hard. So I met her for breakfast one morning and brought this DVD of my mom singing and dancing to some of her favorite music. I slid it across the table and this 76-year-old woman screamed out in the middle of a restaurant, “Oh my god, she looks horrible. Lori, I thought you were taking better care of her.” I burst out laughing.

I realized then that I didn’t see what she saw anymore. I didn’t see the Billy goat hair on her chin, I didn’t see the food splotch on her clothes, I didn’t see that her hair was messed up, I didn’t see any of that. I saw the glint in her eyes. I saw her dimples. I saw her huge smile, and I heard her giggle. But I looked at that picture and thanked that woman for pointing it out to me because I didn’t know I had changed on this journey. You do change. If you want to, you can find joy in these tiny moments that we overlook because we’re judging what it’s supposed to look like. If we can get past that, life becomes pretty darn precious.

Are there other specific memories following your mom’s diagnosis that you can share?

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The La Beys enjoy a laugh together.

There was an afternoon when my mom was asleep at the nursing home. She had just been moved to the lowest functioning unit, and I didn’t want her there. The truth, though, was that she needed it for her own safety. When I entered the room, there were two beds separated by a faint curtain and my mom’s was closest to the window. Her roommate was gone and as I walked into the room I could see my mom on the bed through this curtain. She had her pants pulled down to her belly button, her shirt tucked under her boobs, and she was only 5’2 but weighed 300 pounds. Her whole belly was showing. So I walked in and I just kind of chuckled because she reminded me of Garfield basking by the window. I said, “Oh Mom, do I have to pull out that bikini for you?” Out of a dead sleep my mom woke up, looked me square in the eyes, and with a big smile on her face said, “Lori, I don’t think I should be wearing a bikini.” Then she went back to sleep.

What did you do?

I sat on that bed and bawled like a baby. My mom hadn’t said my name in three years, and I didn’t know if she still knew it. At that point, I didn’t ask anymore because I had a 50 percent chance she wouldn’t remember and this would wreck her day and mine. But that was just a pure moment of joy. She still knew who I was. We still had a relationship.

One of the things I tell people is that we’ll only find what we’re looking for, and I have found over the years that we only remember three things: what saddens us, what causes us fear, and what brings us joy. What saddens us is usually what we’ve lost. What causes us fear is projecting into the future and the unknown. Where there is joy is in the moment. If we’re living in the past or projecting into the future, we’re missing the moment of joy before us. It’s all about being present.

This seems to require an unbelievable selflessness. How do you move beyond self-pity?

Well, we all think we’re being person-centered when we have a long list of things we’re doing for someone else. When I ask other care-partners what they need to focus on, people usually rattle off a list and we simply assume that they’re being person-centered.

I’m sorry, could you clarify what that term means?

Person-centered is an over-used word. To most in the industry, it’s caring in a focused manner where the needs of our loved one comes first. The trouble is that our emotional instincts put our needs ahead of theirs.

Where there is joy is in the moment.

Isn’t that a pretty normal response?

Yes, but until we remove it we can’t really love them. In response, I began to ask these questions, “Are they safe, happy, and pain free?” For care-partners, the need to feel like we are doing something, making a difference, allows us to avoid our true feelings, which typically range from fear to sadness to shame to frustration to resentment. These are feelings that say, if we’re honest, this isn’t how I imagined my life. In order to shift to being person-centered, I believe we have to focus less on our lists and more on our relationship with the person.

What do people not realize about being a care-partner?

Interestingly, people don’t realize they are a care-partner. They think of themselves as a spouse, daughter, son, or a friend. We’ve set up a society where acting as a care-partner is a negative thing. Who do you know that says, “Hey, sign me up for that one!” Unless their trying to have a child, that’s one of the only times people consciously ask to be care-partners. We look down on it because it’s a state of crisis instead a state of comfort.

When you speak to people, what do you try to leave them with? How do you finish these conversations?

Well, one of the things I emphasize is teaching people self-care. Society has told us that this is our job, and it’s these silent expectations that cause people to lose their identity. This happened to me. For me, I had girlfriends that would invite me to coffee and I would say I didn’t have time. One day I said I’d go, and I’ll never forget what I said because it was so cocky and inappropriate. I said, “Okay, I’ll give you ten minutes.” It was like I was the queen or something. I went there to get them off my back. We laughed and cried for two hours. I didn’t know how empty I was until I allowed myself to be filled. When you’re on this path, you don’t even know that you’re drained.

Again, we have to shift from crisis to comfort in caregiving. The only way we’re going to really be able to do that is by having authentic conversations and let people know what our real needs are. This work just knocks on your door and you can’t expect it. The trouble is that we still don’t know what dementia is really like. We’re peering through the window and guessing, so we need to continue to have conversations and start with those living the story: professionals, care-partners, and those diagnosed.