Susan Robertson was raising teens and holding down a full-time nursing job when she started forgetting things
Only the people closest to Susan Robertson know about her kitchen whiteboard. She uses it every day to scribble names, places and appointments she can’t remember.
When Susan was 36, she had a stroke. Recovery took 12 months, as she worked with a physiotherapist to regain her mobility and overcome weakness on her right side.
By the time she entered her 40s, Susan started having trouble with her short-term memory. It was a slow steady decline that started with forgetting dates and appointments and gradually progressed to being unable to recall recent events. Before Susan began using her whiteboard, friends had a hard time understanding why she was often a no-show.
The stroke-dementia link
Stroke is a brain attack. It interrupts blood flow to the brain, leading to irreversible brain damage. For every minute after a stroke, 1.9 million brain cells die that can’t be replaced. While some patients can survive a stroke with no immediate physical disabilities, every stroke is a brain injury that can lead to devastating effects down the road.
Research now shows that stroke is closely linked to a type of cognitive impairment called vascular dementia – vascular because it is related to problems with the blood vessels.
While the risks increase with age, more strokes are happening among younger people like Susan. Adding to their challenges is that stroke and dementia are typically thought of as diseases that affect elderly people.
“People are surprised, especially friends, because they don’t understand it,” Susan says. “My family understands it better because I live with them and talk to them more.”
When her memory problems started, Susan had a lot on her plate, including a full-time nursing job and two teenagers at home. She hoped her difficulties were something everyone experienced as they get older. But deep down she knew something was wrong.
“If you forget something, you don’t know you’ve forgotten until someone says something. Then you know you have a problem.”
Not a normal part of aging
According to estimates based on the most recent current Canadian data, of every 100 stroke patients without a past history of dementia, 16 are likely to develop dementia after their first or recurrent stroke.
When stroke occurs, early screening for dementia is critical. The Heart and Stroke Foundation’s 2016 Stroke Report found that assessing patients under 65 can be more difficult and take years, as other potential causes for behaviour change cloud the picture.
In Susan’s case, she received physiotherapy but no cognitive assessment or treatment after her stroke. She reached out to a colleague, a speech therapist, for help with the stuttering she experienced post-stroke but had no additional therapy.
It wasn’t until four years following her stroke, when Susan couldn’t remember attending an important event with her family, that she had a test to evaluate her cognitive function. It revealed that she had suffered permanent memory loss as well as impairment with her executive function and word finding. Executive function refers to a collection of mental skills that includes processing information, problem solving and reasoning.
When the test confirmed her cognitive impairment, Susan had to stop working.
“My whole job was multitasking. I can’t go back to that because I just don’t have that ability anymore. Losing your employment, your job, it’s part of you. It’s really hard to accept that that’s gone.”
The devastating blow forced the mother of two into a tumultuous grieving process. Alongside her physical rehabilitation, she battled depression and still deals with ongoing anxiety that she could have another stroke without warning.
“It was really hard to digest. You don’t want to believe it. You go through the stages of grief: denial, anger and finally you get to the acceptance stage. My great aunt bought me a bracelet with an inscription It is what it is. I haven’t taken it off. It’s my daily reminder.”
With the link between stroke and dementia now identified. Susan’s case reinforces the need to provide support to stroke survivors, not only for their immediate physical effects, but also for the long-term cognitive impairment that can follow.
In recent months, Susan has rekindled her passion for nursing and helping people. She volunteers with the Heart and Stroke Foundation to raise awareness around stroke and the risk factors you can control to reduce your risk of stroke and now potentially for dementia. And she’s hard at work to create a much needed stroke survivor support group for other survivors in her hometown of Windsor.
Learn more about stroke and dementia