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Young-onset dementia families sought for awareness project

05/25/2009

Just as Max Larkin was graduating from college, he learned his 56-year-old father, Hugh, had young-onset Alzheimer’s disease. The shock of the diagnosis and Hugh’s declining abilities meant changes for the entire family. Max quickly found himself involved in serious discussions on medical, legal and financial matters far beyond what face the typical college graduate.

Three years later, Max and his girlfriend, Emily Boardway, have launched a new nonprofit organization, Mind Series, whose first project, Spoke Your Mind, is to capture a wide array of stories from young-onset dementia families on film. Larkin and Boardway have just embarked on an adventurous bike trek from Seattle, WA, down the West Coast (and later this summer will bike from Boston to Austin) to meet and film interviews with people they are calling Children of Young-Onset Dementia (COYOD).

LBDA’s John Young and Angela Taylor were recently in Seattle to exhibit at the American Academy of Neurology, and met with Larkin and Boardway for dinner. (Both Young and Taylor have family members who displayed the cognitive symptoms of Lewy body dementia before the age of 65.) “This is a great opportunity to capture the stories of LBD families, many of whom have experienced early onset,” said Young.

Though dementia is largely considered to be a condition of the elderly, about 10 percent of people with dementia develop young-onset dementia before the age of 65. And while Alzheimer’s, vascular dementia and Lewy body dementias are the most common types of dementia, research shows that young-onset dementia is typically caused by other diseases, such as multiple sclerosis, Huntington’s disease, lupus or HIV infection.

Families face unique challenges with young-onset dementia, including unexpected role changes in marriage, premature loss of income, caregiving for both young children and someone with dementia, extended years of caregiving for someone who is relatively healthy but cognitively dependent, lack of awareness of young-onset dementia, and challenges in finding age-related resources or services.

To follow Larkin and Boardway’s ride or to contact them about sharing the story of someone who has young-onset Lewy body dementia, visit their Web site, www.spokeyourmind.org.

To learn more about young-onset dementia, visit the following resources:
www.youngdementia.org
http://early-onset-dementia.blogspot.com/
www.alz.org/national/documents/brochure_earlyonset.pdf