Navigating the System

Care partners and their loved ones living with dementia set out on a journey together from the moment of diagnosis. Throughout that journey, they interact with a variety of medical professionals who will work with them to provide direction, assistance or treatment.

As with any journey, it’s important to recognize, anticipate and address any challenges and stressors that may come up along the way. Here, two care experts identify some of the key obstacles that tend to arise while seeking and receiving medical care for people with dementia. They also share some simple tips for dealing with those obstacles effectively.

The Obstacle: Time
The Workaround: Staying organized

Often, a diagnosis of dementia seems to blur or constrain time for the individual and their care partner. It takes time to figure things out; time to research and schedule appointments. And yet, the pace at which things move once you’re in the medical system can make it feel like there’s not nearly enough time to make important decisions.

"The system doesn't adequately reward or remunerate primary care practitioners (PCPs) for spending time with people who are living with dementia and their care partners," says Dr. Elisabeth Drance.

Now semi-retired, Drance works for Providence Health Care in its Dementia Caregiver Resilience Clinic and is a clinical associate professor of psychiatry at the University of British Columbia. She is also a certified mindfulness meditation teacher and works in private practice as a dementia care coach.

"I often tell the caregivers I support to keep a journal of things that you’re observing with the person you support."

– Samantha Norberg

Drance advises care partners and doctors to work together to help to alleviate that time-crunch feeling by communicating via email before appointments.

Photo courtesy of Canva.

Many medical professionals welcome a short email from care partners — in which they summarize their key concerns — because it can help everyone get the most out of appointments and feel less rushed. Additionally, it allows PCPs to zero in on what is most important to discuss.

Care partners can also help maximize everyone’s time by getting organized before appointments and interactions with medical professionals.

“I often tell the caregivers I support to keep a journal of things that you’re observing with the person you support,” says social worker Samantha Norberg, who works with Jewish Family Services Calgary (JFSC).

Samantha Norberg

Norberg provides individual counselling for care partners of seniors and runs the Caregiver Support and Memory Care group programs at JFSC. She says that, in addition to organizing observations and questions via a journal, casting the role of communicator — one individual within a family who can become the consistent representative for the person living with dementia — can be beneficial.

“You’re more likely to have those professionals get to know you, to remember your name,” Norberg says. “And that relationship-building is so important. The more consistent we can keep it, the better outcomes we’ll see for that family.”

The Obstacle: Knowledge gaps
The Workaround: Finding the right resources

Photo courtesy of Canva.

According to Drance, care partners often have a very limited understanding of dementia, especially if their loved one has been recently diagnosed. It can be hard to communicate with someone who is an expert in the disease if they’re not willing to come down to your level of understanding.

“It’s incumbent on health-care professionals to seriously consider ways that information can be shared in plain language,” Drance says.

She adds that medical professionals need to be patient and bring the care partner and their loved one back for more conversations. Care partners can help close the knowledge gap by seeking out information from accredited sources, Drance says.

“Don’t think you can find it all on Google; get it from the places that can give you the real goods,” she says.

One good place to start is the Alzheimer’s Society of Canada; there, you can find answers to lots of key questions, along with further resources that will be tailored to you and your loved one’s specific needs.

Determining who to contact is another source of confusion for many care partners, especially as more medical professionals are added to the care team.

“There are always questions, especially when there are specialists involved, of who does what, and who will have time for me,” says Norberg. “And that can be a significant stressor. How I approach that with families is usually by telling them to go to their family physician first, as kind of a home base.”

"When you take on the care of somebody with dementia, you're actually going to be treating a family."

– Dr. Elisabeth Drance

The Obstacle: Hesitancy
The Workaround: Identifying and voicing concerns

Like with any relationship, it can be hard to find the right tempo between people living with dementia, their care partners and medical professionals. Drance says generational differences can also make it difficult for everyone to get on the same wavelength.

Photo courtesy of Getty Images.

“Our older seniors typically respect the authority of health-care professionals, and often they won’t voice concerns if they’re not asked,” she says.

To mitigate this, Drance suggests that, when possible, medical professionals carve out five minutes at the end of visits to talk to care partners separately. She says this can be done tactfully as a mere courtesy and often reveals important things that can improve care.

“This is a key component of dementia care — when you take on the care of somebody with dementia, you're actually going to be treating a family,” she says.

Norberg adds that care partners need to recognize their own stresses and not feel hesitant about seeking out assistance whenever they can. The care partners she works with often find solace in receiving respite, getting grief counselling, or by joining support groups.

“It's really important to look at what's most stressful about caregiving at [any moment along the dementia journey]. That will help you access the right support,” she says.