Understanding Dementia from the Inside

We know a lot about what dementia looks like from the outside. Our loved one might have trouble finding a word, remembering a story we told them the previous week or finding their car keys or wallet. What we know less about is what it feels like from the perspective of someone who themselves has a diagnosis of Mild Cognitive Impairment or one of the types of dementia. (The five most common types are Alzheimers, Vascular Dementia, Lewy-Body Dementia, Parkinsons and Frontotemporal.)

The bulk of the people I seem to be working with the most these days are those with some form of dementia and their families. In some cases, I'm working with people with dementia who do not have families. Consequently, most of what I come to know about those individuals comes from the individual themselves. However, recently in addition to Tracey Lind's talks and book, I've discovered some excellent sources.

O'Brien was diagnosed with early-onset Alzheimer's disease in 2009, at age 59. He and Shenk began recording these twice-a-month conversations in January of 2019, in which O'Brien shares poignant and hilarious stories about his experiences in the later phases of this disease. I've found his candid portrayal of regular everyday events so moving that they stay with me long after the show is over.

Podcasts and talks, books and shows are bringing a new lens to the sixth leading cause of death in the United States and providing us a new language for understanding and responding to our loved ones with this diagnosis.