The first signs of Kim’s father’s dementia were easy to brush off. Small changes included a frustrated disposition, and pulling away from social situations. “My father started to become overwhelmed by things that didn’t bother him before,” explains Kim. “He became depressed and ridiculously argumentative – two traits that were very out of the norm for him. Other times, he would be boyish and silly. He just wasn’t himself. At the time, we found other excuses for his behaviours.”
With depression in mind, Kim’s father went to his family physician who prescribed anti-depressants and anti-psychotics. “They didn’t know what was going on, and we didn’t know what was going on. Everyone thought it was a nervous breakdown.”
It wasn’t until friends and family members started to voice their concerns that Kim’s family started to take a more serious look. About 9 months after his original doctor’s appointment, his symptoms seemed to be getting worse despite the prescribed anti-depressants and anti-psychotics. It wasn’t until the family physician mentioned Creutzfeldt-Jakob disease (CJD) that it all started to become clearer.
CJD is a form of dementia that comes on fast and is caused by infectious proteins called prions. Prions are proteins normally found in a healthy brain, however, when they are not shaped properly they can have devastating effects even in people as young as in their 40s. For Kim, the tell-tale memory problems, mood swings, and observations that her father simply “wasn’t himself” seemed to fit the mold.
“At that point, I was on auto-pilot as a care partner for my father. Because our family physician had mentioned CJD, I was already researching it myself, and the Alzheimer Society helped me to fill in any missing gaps in information.”
With a referral to a neurologist in hand, the only thing to do was wait. The appointment would be months away, and until then, Kim and her family struggled with that lack of clarity.
“In the meantime, I didn’t really know where to go for help. I knew there was something going on with his brain, and I knew the signs of dementia. That’s when I reached out to the Alzheimer Society for support. In January, I started going to the First Link Learning Series. Then, I started getting individual counselling which was so helpful. They helped me understand the disease, how to mitigate various behaviours, and they also gave me practical advice such as how to go about getting the Power of Attorney papers sorted out.”
Months later, and after a series of tests, a neurologist confirmed that it was very likely, indeed, CJD. Due to the rapid impact that some forms of CJD can have, the diagnosis offered little comfort or use.
“By the time the diagnosis came through, my father had progressed so far that the diagnosis didn’t change much,” Kim remembers. “By then, we knew he was going into palliative. The neurologist gave my father a couple months. The diagnosis didn’t surprise me.”
The real challenge was to find clarity amongst the various health agencies who would coordinate care for her father. Kim recalls how confusing it was to try to find the real support that her family required.
“Trying to navigate the road to a long-term care home is very difficult. The process is kept deliberately vague. When I tried to get more information about when he would be admitted to long-term care or hospital, the most anyone could tell me was, ‘You’ll just know.’ As someone who was already witnessing the advanced impact of the disease on my father, I found that very frustrating. That was the one answer I couldn’t get from anybody.”
Kim’s father passed away within a couple months of receiving his diagnosis. As Kim reflects on the biggest challenges faced by her and her family, the answer has to do with a person-centered approach to care, and consensus-building health teams.
“My experience in a blended family meant that it was hard on us all to find consensus on good care strategies, throughout my father’s journey. There needs to be a role where some agency can be that neutral and focused 100% on the person that is living with dementia, and help mediate where there is lack of trust or broken communication.”
“I hope that the Ontario Dementia Strategy will give appropriate funding to agencies like the Alzheimer Society, toward palliative care and other support-drive organizations. We have to keep these services in place, and enhance the services where appropriate.”