In an opinion piece published recently in the Edmonton (Alberta, CA) Journal, Naomi Mison called for reform of the bureaucracy and improvement of dementia care access in Canada. She should know: Her mother was diagnosed with FTD at 54, and Mison, 40, has been her caregiver for most of her adulthood.  

A Diagnosis Delayed

When Mison’s mother began showing cognitive changes in 2007, the path to answers proved frustratingly long. After their family physician provided a neurology referral, the wait stretched beyond a year—precious time when early intervention could have made a meaningful difference in the quality of her mother’s care. 

Seeking help at an emergency room, the family faced not support but skepticism, Mison related in her article. The challenge, she explained, lies partly in the nature of cognitive impairment itself: People often mask their symptoms in clinical settings. Combined with gaps in medical training around dementia recognition, this means families frequently struggle alone with difficult behaviors like delusions and wandering. 

A crisis hotline ultimately connected them to appropriate care. After six months of treatment for bipolar disorder, a PET scan revealed brain atrophy, leading to the FTD diagnosis. Suddenly, Mison found herself making legal and medical decisions for her mother, advised to establish guardianship while still processing life-altering news. 

The Long Road of Caregiving

Following ten months of hospital stabilization, physicians recommended long-term residential care. No one discussed the possibility of home-based support or mentioned clinical trial opportunities. Nearly 19 years later, Mison’s mother remains in the same facility. 

As a long-distance caregiver, Mison has taught herself administration, accounting, basic nursing, and healthcare policy navigation—skills ideally not acquired through trial and error. The burden of coordinating fragmented care while managing work and family responsibilities weighs heavily on families across Canada, where dementia support varies dramatically based on location and resources. 

More than 770,000 Canadians currently live with dementia, Mison observed, a number projected to reach one million by 2030. Similar numbers exist in the United States. Despite dementia ranking among leading causes of death in both countries, the care infrastructure in both remains inadequate and inconsistent. 

Mison argues for systemic change, endorsing the Brainwell Institute’s proposal for a Canadian coordinating body to establish standards, monitor outcomes, and ensure that funding results in tangible improvements. 

Further reading:  

• Read the original article  

• Get information about home-based support for dementia caregivers  

• Find out about participating in clinical trials 

• See the Brainwell Institute proposal