The Dementia Opportunities for Mindfulness Education program equips caregivers with effective strategies
Last year, Jackie’s 73-year-old mother was diagnosed with dementia. Even though her mom had already been showing signs before the diagnosis, Jackie (not her real name) was left not knowing where to turn.
“It’s scary as a child to know your mom has dementia. When a doctor tells you this, there’s not an ‘A, B, C or D, here’s what you’re supposed to do,’” she says.
While she has three siblings, Jackie is the only one living in the same city as her parents.
“My dad is the primary caregiver, so I wanted to support him better—and to understand how to best support my mom. I also want to take some of the fear out of it.”
When a friend told her about a course for caregivers called DOME (Dementia Opportunities for Mindfulness Education), Jackie was on board right away.
DOME is an interactive workshop for caregivers of people living with dementia, offering strategies to continue meaningful relationships with their loved ones. DOME was developed and is taught by nurse practitioner Kimberly Shapkin and advanced practice nurse specialist Loralee Fox. Between them, Shapkin and Fox have more than 50 years’ nursing experience, much of which has involved individuals living with dementia and their care partners.
“Loralee and I both work in areas where we see people in crisis, and it’s there we hope to have an impact with our education,” says Shapkin, an instructor in the University of Calgary’s Faculty of Nursing and a member of the seniors’ health team in Supportive Living. Fox is a clinical associate with the University of Calgary and works in Specialized Geriatric Services for AHS.
“The stimulus for the course development stemmed from numerous conversations we had with care partners where a common theme was a desire to learn more skills and feel empowered to support the person living with dementia,” Shapkin says.
The first DOME course was held last fall as a pilot, and earlier this year it was offered again at the Alzheimer Society of Calgary. The sessions are highly participatory and interactive. Shapkin and Fox team-teach their classes, which cover everything from a “brain tour,” communication tools and practical approaches to being present, resilience tactics and information about community resources and continuing care.
Jackie recalls how in one exercise, Shapkin and Fox used a rope with knots to visualize how it takes longer for a person with dementia to process information.
“It showed me it takes longer for information to go in and come back out. I might ask a question and expect a response in a few seconds. If someone with dementia asks something 10 times, it’s easy on the 10th time, to say ‘I’ve already told you.’ But you just have to keep answering,” Jackie says. “I learned that the tone I use to respond to my mom is almost more important than the words.”
Dementia looks different for everyone, but Shapkin says individuals are typically diagnosed three or four years after onset. As was the case with Jackie’s mom, most people with dementia have symptoms for a number of years before it’s officially labelled. “Someone who is healthy and well could have it for 10 to 12 years.”
Following a diagnosis, people with dementia can experience apathy, depression, anxiety and denial. And because people may live with dementia for a long time, as a family member or friend, building resilience is paramount.
“With dementia, you get a diagnosis and then, as a care partner, you seem to lose that person as they walk beside you—it’s an ambiguous loss,” Fox says.
“The person may seem healthy physically, but, as their cognition is impacted, they lose memories, the ability to communicate and the ability to function independently, and relationships may be significantly impacted. There may even come a time when they may no longer recognize a loved one. As a care partner your identity might alter for the person living with dementia—they may see a spouse as a parent or a child as a spouse. Their recognition of you might shift, but your idea of them remains unchanged.”
Fox emphasizes being aware of what we’re bringing into the picture as caregivers. “We contribute [to communication] through our own body posture, tone, language, responses and understanding of what’s going on in the person with dementia’s brain.”
And understanding what’s happening in the brain is a first step. Dementia causes tissue loss and chemical changes in the brain, affecting memory, speech comprehension and the ability to articulate.
“People living with dementia often manage better in conversations that include short sentences with single topics,” Shapkin says. For example, people with mild to moderate dementia may understand a five-word sentence. As the disease progresses they may only recognize two of the same five words. At the end stage, comprehension may be lost completely.
Daily routines for individuals with dementia will often change as the condition advances, which can be challenging. For example, a pattern called “sundowning” can occur at any point, but tends to peak in the middle stages.
“The term ‘sundowning’ describes a symptom of dementia that often presents as increased confusion, anxiety, impulsivity, pacing and restlessness in the late afternoon and early evening. This often collides with the care partner’s desire to help prepare the person with dementia for the evening meal or bed,” Fox says. All this comes at a time of day when care partners themselves are tired.
Eating together can be another challenge. Shapkin says people with dementia may not have as much interest in sitting down for a meal. They might not sense that they are hungry, and they may not recognize that their loved one has prepared a special meal.
This can cause frustration, but try to focus on the time spent together. Create meals that are simple and rich in protein and fibre, and small nutritious options that can be eaten on the go. Ideally, continue sharing meals together, as your loved one may see you eating and “mimic” you.
Another challenge is discussing driving and safety with a person with dementia. “Talking about no longer driving is difficult because it challenges our access to independence and our societal belief that driving is a right,” Shapkin says. Strategies include normalizing the change; after all, everyone in Alberta must have a driver medical at age 75.
Jackie remembers being nervous walking into her first DOME class, but she immediately met others like her. “You almost had this instant network of people saying, ‘well, I’ve tried this or I’ve tried that.’ You end up sharing stories a lot.”
Jackie says she can now talk about her mom’s dementia more easily. “I have an appreciation of what she’s going through, and how I can best support her. She spent her whole life supporting me,” Jackie says. “The biggest thing is that it has allowed me to love my mom even more than before.” [ ]