Dementia, Alzheimer’s have reached crisis point, Penn researcher says. Here’s what we can do about it. | 5 Questions

It used to be that as Grandma aged, she became forgetful, and we called it senility. We considered it unfortunate but more or less normal.

Now, a different vocabulary is in common use. People suffer from mild cognitive impairment, dementia, Alzheimer’s disease.

These conditions now affect so many people — those experiencing symptoms, plus their caretakers — that Jason Karlawish, co-director of the Penn Memory Center, terms it a crisis.

Karlawish, also professor of medicine, medical ethics and health policy and neurology at the University of Pennsylvania, explores this and more in his new book, The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It.

We recently spoke with him about it.

It’s important to differentiate the severity of disability from the cause of that disability. Dementia describes disabling cognitive impairment. Someone with dementia has trouble with memory, planning, attention, concentration, language. And those problems with cognition are causing them to have trouble doing their usual and everyday activities — shopping, paying the bills, cleaning the house, driving.

Mild cognitive impairment — a quirky term, to be sure — describes impairment that causes inefficiencies doing daily activities. People find they take longer, they struggle, but they get it done.

Alzheimer’s is a disease that causes MCI and dementia. The first two terms describe the clinical significance of cognitive problems. Alzheimer’s describes one very common cause of those cognitive problems.

Basically, the last quarter of the 20th century marked a convergence of events. One was scientific. With advances in technology, we recognized that the pathologies seen in older adults who had what was called senile dementia had the same pathology as young adults who had Alzheimer’s disease dementia.

There was also a recognition in culture that dismissing cognitive problems in older adults as normal was essentially allowing people to suffer disabilities without the attention and care that they needed.

The third event was the recognition that losing one’s ability to determine his or her life shouldn’t be acceptable. That required a recognition of the value of autonomy, of self-determination. Before that, whole classes of people — women, people of color, LGBTQ, etc. — were kept out of being fully able to live their lives the way they wanted to.

What turned the disease into a common disease was a convergence of these scientific, social and cultural events. What made it a crisis were the events that followed. Namely, the failure — particularly in our country — to adequately address creating a health-care system that could care for people with dementia.

In the Reagan years and the Gingrich Congress, America entered into a difficult, contentious and ongoing debate about what is the role, particularly of the federal government, in providing services and an infrastructure for long-term care. That debate continues. Some argue it’s a private, family matter. Oddly, if you’re poor enough, the state will step in. But the middle class is still left to figure it out.

We don’t have drugs that slow the disease. We have drugs that treat the symptoms, at best. But some day, perhaps soon, we will have pharmacologic treatments that slow the progression of the disease. That’s incredibly promising. It would delay the time before people have disabling cognitive problems. That’s all good.

The challenges, though, are that, first of all, the earlier you prescribe such drugs, the more you’re labeling people. You risk that all the stigmas and worries attached to the Alzheimer’s label are now attached to people who are otherwise functional. They can suffer discrimination. For instance, how would an employer react to knowing that an employee was being treated? They are not impaired. But they’re at risk of being impaired. I often think of one patient with MCI who, after being told she had Alzheimer’s disease, suffered crippling anxiety.

The other side is that over time, despite treatment, people will get sicker. It happens. We see that with other diseases. In those situations, how would a person decide, “I no longer want to get treatment.” Of course, they have that right. It’s a fundamental, ethical right. But what do we do next? What kind of care should a person receive? That’s a huge question.

This doesn’t mean I don’t think it’s good to diagnose and treat the disease early. Why would you wait until someone has disabling impairments? But these treatments will only slow, not halt or arrest the disease.

The U.S. health-care system needs to create a social insurance program that provides long-term care and support for all Americans who need it. Once upon a time, we were almost there. But then the political consensus fell apart, and the rest is history.

The second thing is we need a moon shot, an investment in innovations and technologies that can allow us to better identify emergent disabling cognitive problems and, after they’re identified, monitor people’s well-being. We’re talking about daily life — managing finances, using transportation, taking medications.

We have in our grasp technologies that allow us to identify people who are having problems before they become devastating problems, in particular with finances. That needs to become the fabric of the way our lives are organized so we don’t become victims of errors, mistakes, abuse or exploitation.

We need to invest in a national network of memory centers that have a hub-and-spoke model of service, much like the National Cancer Institute. These would have the ability to train the health-care workforce, be a hub for referrals, and be the centers for research.

We all should be preparing for Alzheimer’s disease, either because we will be living with cognitive impairment, or because we become a person caring for someone with impairment. Right now, the nation has roughly five million with Alzheimer’s and another 16 million in the roles of caregivers. Statistically, you could argue that it ramifies throughout society.

In terms of being a patient, you have to think about who’s going to be your support network. Who’s going to watch over you? Who do you trust? And that needs to be a network of people, not just robots and smart phones.

There are things you can do that have been proven to maintain brain health, and because of that, they reduce your risk of developing dementia. The opportunities afforded by education and access to health care are key. In particular, health care that focuses on heart health is important. The more we look at it, the more we see that a healthy heart relates to a healthy brain. People should control their blood pressure, lower cholesterol, maintain an exercise habit, and avoid tobacco.

AARP has a group called the Global Council on Brain Health. It’s a fabulous collection and assessment of what we know helps, or doesn’t help, brain health. They went after all the things that people talk about — brain games, exercise, music, social engagement — and gathered the literature and data.

As for me, I maintain a regular exercise habit. I make sure I get enough sleep. Every night at dinner, I enjoy splitting a bottle of red wine with my husband. It’s about sitting down, relaxing, connecting, reducing stress.