Tag Archives: Nonfiction

INTRODUCTION

I’m Ann. Like you, I’m an ordinary person trying to wade through the murky waters of dementia caregiving. And it’s rough! As an occupational therapist, I’ve had the benefit of clinical training, countless hours of continuing education, and experience working with hundreds of clients and their families. And yet dementia still has a sneaky, defeating way of causing disruption and frustration in me. But . . . for some reason, I remain intrigued.

In order to ride the waves of dementia, I’ve had to find a way to calm the storm. Dementia care is not about creating a perfect scenario or infallible strategy. It’s about striving for balance, not perfection. When there is chaos, often what is most needed is something to restore calmness and after many years working in dementia care I have finally discovered a formula that works for me. 

Not everything I write will apply to your situation, as every dementia experience is unique, but there are many common strategies that help most people manage dementia one step and one day at a time. Some of these techniques may seem counterintuitive, which is why it’s so important to find reliable information. Equally important is your knowledge of your loved one, and blending this knowledge with new learning will make you a more confident caregiver.

Do you remember the 1989 movie Back to the Future? The main character, Marty McFly, has accidentally traveled back to the year 1955 in a sports car time machine invented by Doc Brown. Marty finds himself in an earlier version of his hometown, meeting younger versions of his parents. Things are oddly familiar but also completely foreign at the same time. He needs to go back and forth between two realities as he tries to function in a 1950s world but speaks, dresses, and operates from a 1980s perspective. The things Marty says make no sense to the people around him, who find him strange. He is laughed at and dismissed when he tells them the former actor, Ronald Reagan, is now the president.

Like Marty, a person living with dementia (who I will often refer to as “your person” from now on) may seem trapped in an alternate reality. Because their brain is losing mass and function, we need to try to understand their reality rather than forcing them back into ours. So—if they think the cleaning lady’s name is Jane when it’s actually Bertha, just go with it. If Bertha is worth having around, she’ll understand!

Understanding their reality also means we step in and offer help when they struggle and know they’re not intentionally trying to be difficult. We also try not belittle them when they make a mistake. If we have been blessed with a healthy brain, we have the capacity to problem-solve, remember most things, and anticipate danger. In many cases, we are now “thinking for two” and have to lead the way when they become lost like Marty.

Let’s spend a little time discussing some basic points about dementia. One common misunderstanding is that dementia and Alzheimer’s disease are the same thing. “Dementia” is a more general term that includes a group of conditions that affect the brain and a person’s ability to perform activities of daily living or “ADLs.” Alzheimer’s disease is the most common type of dementia followed by vascular, Lewy body, and frontotemporal dementia. Mixed dementia is a condition where two or more forms of dementia are present, and researchers have found that this is more common than initially thought (James, 2016). There are many other types of dementia that are rare and equally devastating, especially when a diagnosis is delayed due to limited access to a specialist.