Dr. Jason Karlawish on the History of Alzheimer’s and the Future of Dementia Care

In the early 1900s, German psychiatrist Alois Alzheimer suggested that dementia in older adults might be a disease, not just extreme aging. Then war and upheaval in Germany buried that work for decades.

Dr. Jason Karlawish, co-director of the Penn Memory Center, has spent his career helping the field catch up. He sees dementia as a threat to a person’s autonomy, not just their memory. That view shapes how he cares for patients and how he guides their families.

In this episode, Dr. Karlawish shares the history of Alzheimer’s, explains how caregivers can protect a loved one’s sense of self, and what the next era of dementia care may look like.

In This Episode:

Your Host: Emily Kaplan

• • Our Guest: Dr. Jason Karlawish, Co-Director of the Penn Memory Center, Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania, and author of The Problem of Alzheimer’s

    This Episode Explores:

    • How was Alzheimer’s disease discovered, forgotten, and rediscovered?
    • How can caregivers respond when a loved one with dementia is confused?
    • Why might a new environment cause confusion for people with dementia?
    • What is ambiguous loss?
    • What does the future of dementia care look like?
    • What can you do today to protect your brain health?
      
      

Why Was Early Alzheimer’s Research Forgotten?

Alois Alzheimer studied patients in their 50s whose dementia looked like that of much older adults. Under the microscope, he saw the same brain changes in both groups. He began to question whether “senility” was really just extreme aging.

According to Dr. Karlawish, World War I, economic collapse, and World War II erased much of that early work. It took until the 1980s and 1990s for researchers to pick up where Alzheimer left off.

Since then, the field has identified many diseases besides Alzheimer’s that cause dementia, including Lewy body disease and LATE, a newly described condition in the oldest adults.

How Can Caregivers Support a Loved One’s Sense of Self?

Dr. Karlawish calls dementia uniquely difficult because it chips away at a person’s ability to experience the world and act on their own plans. That’s why he believes good care must protect autonomy.

For families, these changes can bring what Dr. Karlawish calls ambiguous loss. A loved one is still physically present but no longer quite the same. He explains why this grief can feel so unsettling, and why it can begin early, even when symptoms are mild.

Dr. Karlawish also offers a creative approach to one of caregiving’s hardest moments: what to say when a loved one asks for someone who has died. And he explains why some well-meaning questions do more harm than good.

Why Familiar Places Matter in Dementia Care

For some people with dementia, especially those with damage to the brain’s memory center, a new space can be deeply confusing. Dr. Karlawish saw this firsthand when his grandfather broke his hip. The hospital stay led to delirium and a series of poor care decisions. That experience steered Dr. Karlawish toward a career in geriatric medicine.

Familiar people and places, on the other hand, can have the opposite effect. They can tap into a person’s long-held memories, an experience Dr. Karlawish calls comforting and “mind-enhancing.”

Dr. Karlawish also shares how another family eased a move into long-term care with a simple but powerful idea – recreating their relative’s favorite room in her new home.

Watch the episode to hear what Dr. Karlawish recommends for brain health, why he believes novels and memoirs can guide hard conversations about dementia and end-of-life choices, and what he wishes more doctors understood.