Zachary Miller loves talking to his patients about their childhood. He believes that the clues to some neurodegenerative diseases have roots in a person’s early years of life. Did your mother have a normal pregnancy? Were you born on time? Did you enjoy reading? Were you ever tutored in math? Are you left-handed? And on and on it goes, patching together dozens of bits of life history to make sense of why an aging brain may be more vulnerable to specific types of dementia.
I’m not an expert in climate change. However, I am a professional and academic expert in dementia and have noted some comparisons between the two. First, both have been heavily stigmatized and progress to better understand what is needed has been slow for the past thirty years. Second, both seem to have a need for positive change.
The brightest minds in brain health gathered in Barcelona recently for the second annual conference of the Global Brain Health Institute (GBHI) to discuss how best to impact the growing global plight of dementia. The inter-professional conference, held April 19-22, 2017, featured panel discussions, poster presentations, and breakout sessions on science, policy, and narrative, in addition to artistic performances. The meeting drew 175 attendees from Europe, North America, and South America, including 18 scholarship awardees primarily from the Mediterranean and Latin America.
She stares at me, owl-eyed, empty. There is no embarrassment when time ticks on. She stares. A sound breaks her gaze and her eyes lock on to a new target. She is nowhere to be found. The old her, that is. The woman who showed such immense joy and love as a mother is gone. Her husband moves her around the streets of their city like he is pulling a 100-pound weight on wheels in his hand. She goes with the flow. He and the children have built a life around this new woman – this wife and mother who is lost to a genetic disease that has stolen everything human about her. She is only 38 years old. She no longer speaks. She stares. She is led to the bathroom, to the shower, to the table where they put a fork or spoon in her hand for her to eat.
There was an unspoken script in a young girl’s life growing up in a cultured family in Brescia, Italy in the 1970s that she would go on to a university to study the humanities. But this young girl had no interest in the arts or classics – she did poorly in Latin and Greek – and she had her sites set for medicine. Her mom grew up in a transitional generation in the early 1960s but observed feminism through a telescope. She knew she wanted something different for her only daughter, but she was still trapped in the tradition that etched out life for an Italian girl.
The man is in his early 60s and his medical plate is full: an HIV diagnosis four years ago and well before that he began treatment for diabetes and coronary heart disease. For the most part, these conditions didn’t stop him from juggling the many things he loves to do: swimming, museums and dinner with his partner of 24 years, seeing his grown children and grandchildren, volunteering at a high-risk behavioral health group in his town, gardening, cooking – and oh, if he didn’t have enough to do, he went back to school for the fun of it. His schedule is filled with nine credits at a local college.
Eight years ago, the guy could stand up at a meeting and people would sit a bit taller and listen to what he had to say. On the way home, he would sit comfortably in his 1955 DeSoto and grin and wave to passersby. Then, people started honking when he passed and they were anything but happy to see his vintage car. It was happening with increased regularity. He’d scream back. But then noticed that he’d get to a turn in the road and press his foot down heavy on the brake because he didn’t know which way to go. A short time later, the landlord complained that it looked like a three year old had filled out the rent check. None of the information was in the right place. His name was scrawled at the top of the check. It was random – and scary.
The guy is good with people, that’s for sure. Handsome, athletic, good-witted. His gaze has its own smile. He’s charming. It took him three years to get here and since his first arrival last August he’s been back two more times. He is wearing a pair of gray REI shorts, a pullover and black sneakers that will be untied and removed from his feet in 90 minutes. He needs help backing into his chair. In better days, I bet you he would sweep his wife off her feet. His arms still look strong.
After 20 years of marriage, after raising two kids, after building a farm and tending horses and dogs, Caroline knew this much about the man she loves: he is tender-hearted, fun-loving and never lets stress land too long on his shoulders. Four years ago, the old Nick somehow morphed into a new guy, one who is not so patient. A guy who lost his social edge and seems unable to read faces. He is tired and withdrawn. “He’s just not the same guy,” she says. “I want him back."
The man falls out of the bed. It breaks. This is not the first bed to drop under the weight of his flailing bones and thrashing limbs. The bed is now braced by a two-by-four, and it is only a matter of time before it will go down. His balance is poor and he falls out of the bed. This happens all the time. It is not his fault that he has destroyed three beds, two couches, countless toilets seats and an array of nearby furniture. He crashes and trips into things. His body outwits his mind. It throws him around, shamelessly.
Mary and Dick had almost 50 years walking arm-in-arm in marriage and in life when she began holding on tighter than she ever had. Her pace slowed. She pulled on her husband’s arm. It was a subtle change that would give way to other curious happenings around their home. She was the consummate organizer, planning trips that would take them all over the world, managing the bills, the meals, the social activities. She was an education champion and elementary school office manager. Now, everything was taking more effort. Bills went unpaid. Things went missing. She couldn’t plan international trips. She was frustrated. She had fits of anxiety and anger, uncharacteristic of her naturally easy-going way.
Tony was never far from a book. Much of his adult life was built around learning, and then teaching: first at Stanford where he was finishing his doctoral degree and then crisscrossing the country in pursuit of providing knowledge to others. His life was the recipe for an academic: intelligent, serious and compassionate about ideas. It is no wonder that Tony, who in the mid-1970s as director of a national center for bilingual education training, mentored the girl he would marry. Miriam was a teacher and administrator when she accepted a job in the program, and a year later he asked her out on a date. Soon after, the program lost its funding and Tony fired her, and soon after married her, and encouraged her to pursue her own doctoral degree, which she did.
Almost 30 years ago, a middle-aged man traveled to an Alzheimer’s Association meeting with a copy of his mother’s autopsy in his bag. It read simply: dementia lacking distinct characteristics. He’d had his mother’s brain sent cross-country to try to figure out why she – and her two brothers and a cousin – died with a dementia that caused them to act impulsively and irrationally. It wasn’t just the bizarre behavior he was curious and concerned about. In illness, his mother’s brain was shrinking, and she’d lost so much of who she had been in her younger years. (She was 50 when people began noticing something very odd about her behavior.) But as her cognitive skills diminished she gained something rather remarkable: an exquisite talent for painting gazelles and churches and people.
It began with a word. It was not the meaning of the word but its pronunciation. A few months passed and there were even more words that couldn’t come out right. First, he noticed that they were longer words, and in time, he was having problems with shorter words too. The words would eventually land chaotically in the air. One syllable after another choppy syllable. Any hints of grace or fluency were gone. In time, he started leaving out adjectives and conjunctions.
Christopher G. Oechsli, President and CEO of The Atlantic Philanthropies, describes the ambitious Atlantic Fellows program to train a new generation of leaders to challenge persistent disparities and make improvements in the human condition across communities, countries, and continents.
The four trainees from Ireland, Spain, and the Netherlands will be the first to graduate as Atlantic Fellows at GBHI in Ireland and will go on to be advocates and leaders in brain health, implementing programs throughout the globe to help prevent or lessen the impact of cognitive impairment. Their work spans key points across the prevention, diagnosis, assessment, and management arc of the dementia spectrum.
The Atlantic Philanthropies announces the the Atlantic Fellows program to empower and connect dynamic individuals who are committed to working together across disciplines and borders to advance fairer, healthier, and more inclusive societies.
This conference brought the Global Brain Health Institute to life, uniting cross-disciplinary leaders from North and South America, Europe, and the Mediterranean to talk about international brain health around the world.
The landmark award, which is the largest single programme grant Atlantic Philanthropies has ever made, is the biggest philanthropic donation in Irish history and the largest ever received by Trinity College Dublin.
The Atlantic Philanthropies is awarding UC San Francisco and Trinity College Dublin, the University of Dublin, $177 million to create the Global Brain Health Institute, a groundbreaking venture to stem the precipitous rise in dementia by training and connecting a new generation of leaders worldwide.