Navigating the world of degenerative illness

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When former CEO Bruce Wood was diagnosed with young onset Alzheimer’s disease in 2016, he made a point of talking publicly about the illness to help others. When he could no longer do so, that duty fell to his wife, Lisa Raitt.

The former senior federal cabinet minister, lawyer and mother has made speaking about her husband’s illness part of her busy life, even when it is difficult, which it often is. She sees it as a duty to help people better understand the disease and to support caregivers like her.

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“I always accept these invitations.”

Raitt will be keynote speaker at an Ottawa conference this weekend aimed at helping patients and their caregivers navigate the often complex systems of care once they are diagnosed with neurological illnesses such as Alzheimer’s.

The Enhancing Access to Care conference, sponsored by the University of Ottawa’s Brain and Mind Research Institute, will include sessions on barriers to accessing care for rural residents, the latest research for neurodegenerative illnesses, including Parkinson’s disease and dementia, information on the regional geriatric program and Raitt’s talk on the challenges of care for young-onset Alzheimer’s.

The conference is a recognition of the difficulties patients and their caregivers can have accessing the help they need.

Wood was diagnosed when he was 56 and Raitt was 47. It was a shock. Raitt said she wanted people to think about the fact that “sometimes it’s Alzheimer’s” — meaning possible symptoms shouldn’t be dismissed just because of a person’s age.

In the early days after his diagnoses, Wood’s disease seemed to move slowly, she said, and they were able to travel and “do all of our bucket-list things.” But then it progressed and life became increasingly difficult.

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“We had a very specific set of circumstances where Bruce was becoming very combative, not just aggressive, but aggressive that was threatening to our lives in the house. When you are in it, you can’t negotiate because you are drowning and just trying to keep your head up.”

Raitt said she thought it was important that people hear the realities of the disease “because I am not the only one who is going through this or went through this. I believe there’s an obligation for me to at least give some kind of colour to the reality so that others can recognize it.”

Wood is now in a long-term care home, something Raitt says she fought “with every fibre.” She acknowledges he is receiving better care than he could receive at home and that she probably waited too long to do so.

“I think what could have helped me is somebody saying they are better off in a long-term care facility because he gets better care than I could have provided.”

Raitt said she also hoped members of the medical community heard her story to start to think about the possibility of young onset Alzheimer’s when a patient had symptoms that might include increasing problems with planning, problem solving, attention and emotions.

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She also noted that the vast majority of caregivers, like her, are women. Raitt, a lawyer, belonged to a support group of caregivers in similar circumstances and says almost all of them decided to retire early because of the pressures of caring on top of their work.

“I didn’t have the choice to retire. I’ve got two kids in university and a husband with special needs. That takes extra cash — and I continue to work for my own sanity, too” she said. “But the reality is caregivers are the ones taking a load off society and society couldn’t function without us. I’m not saying it’s society’s problem, but there should be recognition of the load that caregivers are taking.”

The conference, which will be held Saturday at the RA Centre, is aimed at people with neurological conditions and their care partners. In addition to presentations, organizations will be on-site to offer information about other services available in the community, including from traditionally marginalized group “who might not know there are services specific to their needs,” said Dr. Lisa Walker, a clinical neuropsychologist who is co-lead of the uOttawa Brain and Mind Research Institute’s neurodegeneration pillar.

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It is the first event of its kind for the University of Ottawa Brain and Mind Research Institute. Typically, events are geared toward research, Walker said.

It is difficult living with neurodegenerative conditions, she said, and can be a daunting task to access care. Sometimes, it is available, but people don’t know how to find it.

She said the shortage of family doctors was an added burden for people to understand the supports available in the community. “There are many excellent services that people can access, but they don’t know they exist and can’t access them.”

Among them are services through the regional geriatric program and the Dementia Society of Ottawa and Renfrew County. One of the speakers will talk about Ontario 211, a help line to help people access social services, programs and community supports.

Walker said the conference would also address the burden on informal caregivers, as family members and friends who care for loved ones are called.

“It is a huge burden of care, both from a practical standpoint and an emotional standpoint.”

The conference runs from 9 a.m. to 5 p.m. on Saturday. The conference, including lunch, is free and the venue is accessible. More information is available online: https://www.uottawa.ca/research-innovation/brain/events/enhancing-access-care

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