A diagnosis of dementia can completely alter the course of a person’s life, as well as the lives of those around them. For family and other loved ones, this often means taking on the role of unpaid caregiver.

Caring for a senior, regardless of whether they are living with dementia, can come with great sacrifice. Our recent report, Dementia in Canada, found that unpaid caregivers of seniors with dementia spend more time in their role and are twice as likely to experience distress as people caring for seniors who don’t have the disease. There is also a significant out-of-pocket cost, estimated at $1.4 billion a year nationally.

The roles and responsibilities associated with caregiving can differ depending on the care recipient’s symptoms and relationship with their caregiver. These also change as the disease progresses.

To learn more about the role of unpaid caregivers, we spoke with 3 women who are currently caring for a loved one with dementia to get a first-hand account of their experiences and challenges.

Liz’s story

In 2008, Liz and her husband Dave were looking forward to an empty nest when they began noticing that something wasn’t right with Dave. Their third child was leaving home, and to celebrate this new chapter, the B.C. couple planned a trip down the West Coast, combining their mutual love of the outdoors and Canadian history.

During their trip, Dave, who was known for his great sense of direction, couldn’t recall directions moments after hearing them. “We thought maybe it was a bit of hypoglycemia,” recalls Liz. “The whole trip was an absolute nightmare with these kinds of incidents.”

A quick decline

Once home, Dave visited his doctor who, over the course of the next 4 years, prescribed a number of brain stimulants to no avail. In 2012, at age 61, Dave received an official diagnosis of young-onset dementia, which includes those diagnosed before age 65 and accounts for 3% of cases in Canada. In the first year after Dave’s diagnosis, Liz stopped working to care for her husband full time and spend time together.

Dave’s diagnosis was later categorized as frontotemporal dementia, with symptoms that include change of behaviour and an inability to restrain certain behaviours.

Liz says that soon after Dave’s diagnosis he grew physically and emotionally aggressive, and it became difficult for her to manage these behaviours on her own.

Being the buffer

Dave moved into an assisted-living facility in October 2015, where he lives mostly autonomously. Overall, Liz is happy with the move but noted that the transition has not been seamless.

Dave often speaks bluntly (one of the symptoms of his dementia), which has caused some issues and concerns with staff. As a result, Liz acts as an intermediary. “I do a lot of damage control there… This was a surprise to me. I thought I would be less stressed.”

Caregiver distress

Caregiver distress is common among caregivers of seniors, particularly those who care for seniors with dementia. In 2014, Liz says she experienced an emotional collapse. “The reality is a phone call precipitated it. My daughter called me and I couldn’t stop crying.”

Liz’s 2 daughters, who live in Alberta, were able to make arrangements to work from their mother’s home for 8 weeks, which helped Liz get back on her feet.

Physical symptoms have also manifested, and Liz says she now suffers from gastrointestinal problems that her doctor is helping her manage.

The “invisibleness” of caregiving

Health problems associated with stress, lost friendships and missed holidays, like Christmas and Thanksgiving, with her children and grandchildren are among the things that Liz refers to as the “invisibleness” of dementia, meaning things that aren’t easily measured or talked about openly in the caregiving community.

“Not that we can prepare anyone for this, but I’d done a lot of reading when it was apparent that dementia was what we were heading into to prepare for what the territory was going to look like. But you don’t hear about this. It would have been good for me to hear someone’s inside journey,” she says.

“You put on a happy face and you carry on with your day, right? But there are underlying pieces. Our hearts have been broken.”