“What can you do to help them? They have dementia. You can’t fix that.”
As an occupational therapist with the honor of working with many people living with Alzheimer’s disease or related dementias (ADRD), I’ve heard this question a lot.
It’s understandable. It’s natural for family members and caregivers to feel hopeless about a condition that doesn’t “get better.” Yet one of the most powerful things OTs can teach families and caregivers is that their loved ones actually CAN experience quality of life at every stage of the disease.
Sound unlikely? I’ll explain more, but first, let’s talk about what dementia is—and isn’t.
Dementia is not a disease itself.
Think of the term “dementia” as an overarching description of a group of symptoms associated with certain diseases. Dementia can be categorized as reversible or irreversible. The irreversible types of dementia are progressive in nature. According to AOTA's Occupational Therapy Practice Guidelines for Adults With Alzheimer’s Disease and Related Disorders (page 5), dementia affects attention, memory, speech, object recognition, object use, and coordination.
Depending on the type of dementia a person is living with, whether reversible or irreversible, will determine how we will approach their therapy plan. Will it be rehabilitation or habilitation? In rehabilitation, we strive to restore function. In a habilitation approach, we provide compensatory interventions to maintain function or to prevent risk factors from causing further decline or loss of function.
So what can an occupational therapist do?
Here’s a statement I stand by every day: Occupational therapists are advocates who promote engagement and quality of life for their clients.
My role as an OT working with a person with impaired cognition is to evaluate their remaining abilities and use those strengths to support their engagement in daily occupations. As occupational therapists, we possess the necessary skills to analyze tasks and determine where a person is experiencing challenges in functional cognition, as well as determining where they would benefit from support—either from a care partner or from the environment.
Why training is so important
It’s not uncommon for clinicians to feel that a person with dementia is unable to learn and therefore is not a candidate for skilled therapy services. Although this may be common, it’s a grave misconception. Occupational therapy has a great deal of skill to offer persons living with impaired cognition and their care partners. This requires specialized training in the area of dementia therapy and an understanding of functional cognition. Having the passion to work with people living with ADRD and being an advocate for them is a necessity.
When we understand someone’s cognitive level, we understand how to treat them.
It’s essential to understand that cognition is at the very foundation of function. When we understand where a person is performing in their functional cognition, we then know how to approach treatment effectively.
Having an understanding of development is also important as we note a regression through the stages of development as a person progresses in the disease process. This regression is referred to as Retrogenesis, a theory developed by Dr. Barry Reisberg. This knowledge is vital to understanding how we adapt our expectations and key care approaches to promote the success of the individual living with dementia.
Join the culture change movement.
The role of occupational therapy and its patient-centered care approach perfectly complements the culture change movement that’s sweeping the nation in the form of relationship-centered care.
Medicare’s National Partnership to Improve Dementia Care
promotes practices of quality care for residents with dementia, fall prevention, and the reduction of unnecessary anti-psychotic medications. Occupational therapy can contribute greatly to these quality care initiatives as it understands the role of cognition in function.
With more than 5.3 million people currently diagnosed with Alzheimer's, chances are there is at least one person in your life living with the disease. With the rates of people affected by Alzheimer’s disease expected to soar to about 13.8 million, there is a great need for OTs to discover their passion and deepen their skill set in working with this greatly underserved population.
If you have a loved one with dementia, I urge you to seek the help of a dedicated OT who’s trained in high-quality dementia therapy. If you’re an OT, I encourage you to reach out to us about getting trained.
Shouldn’t everyone have the opportunity to live to their fullest emotional and functional potential?