Smartly dressed in a sweater and a zip-up, a good-looking, fit man appearing much younger than his age greets us at the door with a smile. At his side is his elegant wife, Bonnie, a claims investigator for the Workers’ Compensation Board. Without even the opportunity for a formal hello, the real owners of the house — 2 pint-sized, friendly dogs — greeted everyone with plenty of kisses to go around.
Just steps inside, it doesn’t take long to be drawn to the artwork adorning the walls in all directions. Professionally drawn and acquired at a gallery you might think, but in fact, just one of many hobbies Bryan had when he wasn’t practicing law himself. An avid runner, known for completing distance races that the average person would balk at, when he wasn’t training or managing his practice, he was at his art bench — still a fixture of the upstairs living room.
It wasn’t even these impressive talents that drew Bonnie to him in the first place, though. Their first encounter was simply by chance; a couple of young professionals who started chit-chatting at a bar. “He thought I was really honest, and he just took a shine to me and we went out on a date two days later. And that was basically it. He’s a wonderful man. Boy he was a talker; he talked for three hours [on our second date] and I thought, ‘Holy! Take a breath!’” The room broke out into rowdy laughter for the first of what would be several instances, and you could almost see any reservations about the encounter dissolve as quickly as they came. Although Bryan can no longer communicate verbally like he used to, the language of laughter and physical contact did the speaking for the both of them.
Despite her best efforts, he charmed Bonnie with his ability to be unendingly happy. “We had a lot of things that we liked to do that were very similar, so we just clicked. And he’s so easy to get along with and I’m not, really!” Bonnie quipped. “It’s kind of a cliché but we really loved each other and we still love each other.” They were married 22 years when his cognitive decline was first investigated, eight years ago.
It wasn’t actually Bonnie who first noticed Bryan’s memory loss; It was brought to her attention by his colleagues. “They noticed that his conversation wasn’t as detailed; he wasn’t engaging as much in the conversation. You know, the small talk and stuff like that.” Unsure what to do, she made an appointment with a doctor for the next day. Cognitive and laboratory tests were run, and with no other causes identified, Bryan was eventually diagnosed with Alzheimer’s type dementia. “Even when he was assessed twice and it was fully explained to them, he didn’t believe it. I told him and he started laughing. Zero insight. And I think that’s part of the disease.” The diagnosis was tough on both of them. “When it got to the point where he couldn’t drive anymore, that was a really big hurdle, taking away his independence. I went from knowing nothing to living it. I would get mad at him, which wasn’t fair to him.”
Bonnie realized that support was necessary. Through home care and some respite opportunities, Bonnie and Bryan managed at home for a few years. Ultimately, with progression of the disease, the caregiving needs were too great, and Bryan was placed in a facility. Although a challenging decision at the time, Bonnie reflects positively on the decision, choosing to focus on how their time spent together now is more about companionship than caregiving.
Friends and strangers alike are mostly supportive, but there are certainly some awkward occurrences, an issue that often comes along with a disease where those living with it show no physical signs of disability. “People don’t know how to communicate with him and it’s really hard to communicate with him now. That’s the biggest hurdle. I don’t know how you can improve how other people react. How can you control that?” Perhaps in an effort to compensate, Bryan has begun using some endearing accents that brighten the room. “Bryan has decided that he’s very skilled at accents… He’s been doing it for a couple of years, but I think it’s a replacement for speaking and gets everybody laughing, so that’s exactly what he does!” Right on cue, Bryan breaks out an Italian accent and boisterously announces something nonsensical that has the entire room in stitches once again. One final time, they lock eyes, and at that moment you could truly see the look that only decades of love can produce, never to be taken away.
There are many variants of dementia, but Alzheimer’s disease is the most common type, accounting for somewhere between 60–80% of cases. As defined by the most recent update from the American Psychiatric Association (DSM-V), dementia (or major neurocognitive disorder as it is formally known) is characterized by a decline in cognition in one or more domains (social cognition, memory, language, executive functioning, complex attention, and perceptual motor abilities) and represents a decline from previous levels of function, is severe enough to interfere with daily function and independence, and is not better accounted for by another medical problem that can mimic cognitive decline (such as depression or low thyroid function). When cognitive changes are not significant enough to interfere with daily activites/independence, it is called a mild neurocognitive disorder, or more commonly, mild cognitive impairment. In typical Alzheimer’s Dementia, memory impairment is the most common initial symptom.
Reduced insight into difficulties (or anosagnosia) is a common, yet variable feature. It can often become more severe as the disease progresses.
Focusing on ability rather than disability, such as communicating through song or art, non-verbal as well as verbal cues, and connecting instead of correcting or contradiction are all positive strategies to communicate effectively with someone with dementia.
Originally published at peopleofdementia.com on April 5, 2017.