About

The first project in the Mind Series, Spoke Your Mind spotlights Children Of those with Young Onset Dementia in three ways:
On the Road: a 2,000-mile U.S. bicycle tour to reach COYOD communities
On Film: a short video series and documentary film on COYOD stories
Online: a place for resource sharing and networking for COYOD

The Project

Spoke Your Mind has three primary goals:

Spotlight Children Of those with Young Onset Dementia (COYOD) through documentary film
Complete bicycle tour across the United States
Create a forum to connect COYOD

The Inspiration

Co Founders Max Larkin and Emily Boardway are COYOD. Here’s the story of Max’s father, Dr. Hugh Larkin, as written by his wife Beth.

(Hugh as a boy, standing in the middle of his four brothers)

Hugh was born under a lucky star as the sixth of ten children. Endowed with many natural gifts, he excelled in athletics as a youth and rose to positions of leadership among his peers. As he matured, he acquired a hunger for learning, devouring books that revealed the mysteries of the universe.

He received his MD from the University of Washington and went on to work with countless patients during the most difficult and trying times of their lives. He treated each one with compassion. Despite his professional success, he found his relationships with his family and friends the most gratifying area of his life. He never uttered the words “I’m too busy” when asked to play with his children and he took authentic joy in the most childlike moments.

Hugh’s other great and enduring love is for guitar-driven rock and roll. His response is primal and seems to affect him at his core. He was in the process of developing plans for a nonprofit clinic for musicians when he became ill and disease interrupted his life.

(Hugh with family. From left: Max, Emily, Kate, Dillon, Beth and Jersey, and Hugh)

No one knows for certain when the insidious process of Alzheimer’s first began for Hugh. A diagnosis was confirmed when he was 56 years old. The deterioration has been precipitous and tragic. In two short years, he no longer is able to practice medicine or drive a car, motorcycle or boat. He no longer runs 10Ks or water skis. He has ceased writing screenplays and books. He doesn’t tell stories and has lost his position as the dynamic, witty life of the party. However, he retains his essence of childlike wonder. He adores little children and animals and gravitates toward them. He is social and gently enjoys time with his family and friends. He has been struck by a cruel and devastating affliction in the prime of his life; such is the fate of Young Onset Alzheimer’s Disease.

The Participants

(Emily, Max and Hugh)

Max Larkin and Emily Boardway have many parallels, but are unique in their own right. Both born in Tacoma, Washington, in 1984, they were raised in the small fishing town of Gig Harbor.

After simultaneously studying abroad in Prague and Senegal, respectfully, Max and Emily completed undergraduate studies at the University of Washington in 2006 with degrees in International Studies. They share a passion for travel, music and health.

Max taught himself to play the guitar at a young age with the help of his older brother. Music became a dominant force in shaping Max’s life.

During her studies, Emily worked at a small communications firm based in Seattle on accounts including Pearl Jam, Vote for Change Tour and Music for America. This turned Emily on to using art to promote social responsibility.

When Max’s father, Dr. Hugh Larkin, was diagnosed with Young Onset Alzheimer’s Disease in 2006, it forever changed the lives of all those close to Hugh. Hugh’s experience is Max and Emily’s inspiration for Spoke Your Mind.

Who are COYOD?

COYOD (Children Of those with Young Onset Dementia) are young caregivers—daughters, sons, nieces, nephews or any young adults coping with a loved one’s degenerative mental disease.

COYOD are faced with new challenges that are often beyond their years, including changing diapers and handling finances for their working-age parent. The swapping of roles that takes place causes emotional and physical stress on COYOD, who are often trying to manage their own lives as well.

If you are a COYOD, please read this letter.

What is Young Onset Dementia?

Young Onset Dementia is a general term that includes many diseases characterized by a decline in intellectual functioning before age 65 that is severe enough to interfere with a person’s usual activities and relationships. Common causes of Young Onset Dementia include the following diseases: Alzheimer’s, Pick’s, Huntington’s, Lewy Body and Creutzfeldt-Jakob. Of these, roughly one third of this age group with dementia has Alzheimer’s.

People who develop Young Onset Dementia are often affected during the peaks of their careers and child-rearing years, leaving their families devastated and in need of help. Currently, there are more than a half million people living with Young Onset Dementia in the United States. This number is expected to increase significantly in the next century, creating a dire need for immediate attention