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opinion: i wasn't completely surprised by a dementia diagnosis at 48, but i was shocked by the lack of support

despite the serious impacts of young-onset dementia, awareness is low compared to dementia in seniors, resulting in delayed diagnoses, a lack of support systems, and few resources for individuals and their families.

by john mccaffery, board member and volunteer, youquest

nov 13 2023
read time 4 minute read
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what happens when you are 48 with dementia?
john mccaffery (pictured with his wife cindy), left his career as an estate administrator with a national bank at age 48 after he experienced cognitive difficulties due to dementia. getty
younger canadians hit with a dementia diagnosis are profoundly impacted, yet there are few supports available for them or their families.
my father died at age 62 from young-onset alzheimer’s disease, so when a neurologist told me at age 48 that i had dementia and would never work again, i was devastated, but not completely surprised.
what did surprise me was the lack of support and services for younger people with dementia.
when symptoms of neurocognitive brain disease appear before the age of 65, it is referred to as young-onset dementia (yod). yod affects people in the prime of their lives, and their community of loved ones, friends, and work colleagues. the alzheimer society of canada estimates that at least 28,000 canadians live with yod.
alzheimer’s disease is the most common cause of yod. other causes include frontotemporal lobe degeneration (my diagnosis), strokes, dementia with lewy bodies, head injuries, genetic disorders, and substance abuse. yod robs us of our cognitive abilities, executive functions, memory, the ability to function independently, and eventually takes our life.
my neurologist said that because many of the risk factors for dementia, such as the high rates of obesity and diabetes, are no longer improving in young and middle-aged adults, he fears the incidence of yod could be on the rise. i recently learned that air pollution is also a risk factor.

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yod has impacted every aspect of my life. it ended my employment, disrupted relationships, and strained my family’s financial stability.
at the height of my career, i was suddenly faced with a severely slowed cognitive processing speed that caused a decline in my activities of daily living. the loss of my job and my roles in the community, plus being unable to participate in activities that i once enjoyed, were a huge emotional blow.
the effects of my disease extend beyond my own world and into my family and community. my wife and children have become my “helpers” and have had to learn how to navigate the emotional demands of caring for a loved one with a progressive and incurable condition. it saddens me that my children are witnesses to my decline and i worry for their futures and sense of security.

the strain on relationships is an ugly byproduct of brain disease

the strain on relationships is another ugly byproduct of my brain disease. my wife expected to enjoy our retirement years traveling together but now finds herself in the role of care partner, facing the loss of her spouse, not only emotionally, but also in terms of shared responsibilities.

financial strain is also a constant worry especially as i face my 65 th birthday in a couple months and the resulting loss of my long-term disability income. i couldn’t maintain a career after my diagnosis, but many can if they have employers who accommodate their employees with yod with flexible working arrangements and by educating colleagues.

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despite the serious impacts of yod, awareness of this syndrome remains low compared to dementia in seniors, resulting in delayed diagnoses, a lack of support systems, and few resources for affected individuals and their families.

to fill the gap in services, my wife and a friend co-founded youquest . with the direction of recreation therapists and volunteers, they created a community-based day program that is filled with stimulating, relevant and age-appropriate activities. at youquest, we focus on active pursuits and wellness, since most of our participants are physically well and enjoyed sports and 2022年世界杯名单猜测 before their dementia diagnosis.

days begin with coffee and conversation before we head to the fitness studio or gymnasium for a game of pickle ball. before lunch, we might be challenged with a brain game or two. breaking bread together is an important time for us, as many families refrain from taking loved ones to a restaurant due to the cost of eating out or the stigma of dementia.

after lunch we might go for a walk by the river or visit a museum. we often take longer trips out of the city to enjoy a hike and a picnic. then it’s back to our home base at the paperny jewish community centre where we enjoy live music before heading home. the jcc is a welcoming, dementia friendly community within a fabulous facility.

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care partners feel energized and better able to care for their loved ones

after a day at youquest, care partners tell us they feel more energized and better prepared to care for their loved ones. they say their partners are in a happier mood, have a healthier appetite, and sleep better (so the care partners do as well). they enjoy a day of respite and know their loved one is safe with peers at youquest, and not bored and isolated at home alone. youquest also helps the care partners with access to counselling and peer support resources.
five years after inception, youquest continues to provide a high quality, intentional day program twice a week and recently started a half-day program for those who find a full day too onerous.

our goals are to add additional locations in calgary and beyond, and to bring our services to bipoc and rural communities. we are also looking into how companion dogs might help our families. to help get these dreams off the ground we recently held a fundraiser, “celebrating the spirit and beauty of alberta in painting and song,” featuring live music from tom phillips and the dt’s and a visual art performance by melanie morstad .

there are other opportunities, though, to help us continue our great work supporting people with young-onset dementia, including volunteering, as well as providing financial support. click here to donate .

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john mccaffery is a member of the youquest board of directors.
youquest is a charity that supports people with young-onset dementia via a day program focused on wellness, stimulating activities, and peer support while offering respite, access to counseling and other resources to their care partners.
thank you for your support. if you liked this story, please send it to a friend. every share counts. 

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