I’ve Treated People With Dementia for a Decade — Here’s What I Want Family Caregivers to Know
My first job changed my life. As a recent graduate, I landed my first role as an occupational therapist at a nursing home where I was assigned to the memory care unit. One person on my caseload was an individual living with dementia, and I naively treated it like any of my other cases. So when I asked them to come to therapy, they responded by pouring juice on me.
Obviously, having juice-stained scrubs is not a great impression for the first day of work. But the juice incident was also a wake-up call. School taught me the terminology and what happens in the brain, but I was woefully unprepared for what it takes to care for someone living with dementia. For people with cognitive impairment, the standard procedure is to ask them to come to occupational therapy, but that one-size-fits-all approach does not work for dementia. If I wanted to help my patients, I would need to rethink how to personalize my treatment sessions to fit their unique needs.
Over 55 million people worldwide have dementia and while it can happen to anyone, women are the most affected directly and indirectly. The World Health Organization reports women make up 70 percent of dementia caretakers — and just like any other job, it carries a risk of stress and burnout.
Fortunately, you don’t need a professional degree to take care of someone with dementia. A year and a half ago, I created a company called Your Dementia Therapist. It offers digital education for taking care of people living with dementia. I create content to teach techniques and strategies to increase the quality of life for people with dementia and make caretaking easier to manage.
Below are some important tips I’ve learned while helping others with this condition.
Learning of a loved one’s dementia diagnosis can stir up a lot of feelings. Most feel sad and heartbroken over the news, others might feel some guilt over not noticing the out-of-character behavior sooner, and some might have a sense of dread about the responsibilities that come with taking care of someone sick. These are normal reactions; it is a life-changing diagnosis. But that does not mean their life is over.
Dementia does not take away who they are — your loved one is still there. People have a tendency to believe that a dementia diagnosis is the end when it’s really learning to live with cognitive impairments.
In fact, I’ve met individuals in the early stage of dementia who continue to lead fulfilling and meaningful lives. The big factor was the supportive and inclusive environment they were in where they didn’t feel like a burden but like another person with feelings, thoughts, and interests. If we continue to focus on what dementia has robbed a person of, then all you’re going to see is everything they can’t do anymore. And the person living with dementia will also pay attention to all the things they’ve lost. Instead, if you shift the narrative and focus more on what they are still capable of doing, it’ll show that a dementia diagnosis does not define them.
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One way to promote hope and support for people living with dementia is by giving them a meaningful sense of purpose. One story that has always struck a chord with me is when I was working with a retired teacher who was a golfing extraordinaire back in the day. Her husband was concerned about how withdrawn she’d gotten since receiving her diagnosis. Her limited mobility from being in a wheelchair also discouraged her from trying to move around. After learning about her golfing past, I purchased a mini golf club set and with some assistance, she could play a game of chair golf. After my instruction to help her become more independent with getting around in her wheelchair, she no longer needed my help with putting her hands on the wheelchair rims to get around. She was able to participate in a game of chair golf and land almost every shot. I will never forget how happy she was playing golf again.
This is one of many examples I mean when I talk about meaningful connections. What are they still capable of doing? Focusing on abilities can create special moments that strengthen the bond between caretaker and the person living with dementia as well as reminding the person that their lives still have meaning.
Dementia has a unique pattern of memory loss for people with Alzheimer’s. The condition — which makes up 60 to 80 percent of dementia cases — largely attacks recent memories like what they had for breakfast this morning. Meanwhile, your earliest memories are the last to vanish. This is called the first in, last out concept.
I’ve noticed individuals can recall memories from decades ago, even in the middle to later stages of dementia. If you bring something up from their childhood or early adulthood, there’s a good chance they can tell you a story from that time. Or if they cannot verbalize it, there might be signs their body still remembers. For example, you might notice a past dancer moving their arms in certain positions when hearing ballet music. You’ll want to keep in mind how you approach talking about past memories though. You don’t want to frustrate or exhaust the person with back-to-back questions or talk to them like a child. Instead, introduce yourself and say something along the lines of “I heard that back in the day you did X, Y and Z.” Motivating them to talk about the stories they do remember will build rapport and let you spend quality time with your loved one.
Finding your own support system when caring for someone with dementia is key. However, one common mistake people make is comparing their caregiving situations to others. No two people living with dementia are going to have the same needs. For example, they may suggest a product that has helped them, but you try it, and it doesn’t help your situation. All in all, trust your judgment. You know your situation better than anyone.
As a caregiver, you’re going to make some tough decisions. Some choices, like moving someone to a nursing home for around-the-clock care or signing a DNR for those at the end of life, might leave you feeling guilty. Give yourself grace in this process because it is emotionally taxing. Try not to ruminate or question the decisions you have made in your caregiving journey — no one really prepared you for the special challenges involved in caring for individuals living with dementia.
Remember that you’re doing a great job and the best you can do in navigating a diagnosis nobody wanted. Keep showing up and celebrate the time you have with your loved one.
Mary Osborne is an Austin-based occupational therapist and founder of Your Dementia Therapist, which provides digital education to dementia caregivers. To learn more about Mary and her company, visit her website, Instagram, or Facebook page.
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