We live in a diverse nation in which there is a range of people of various racial, ethnic, socioeconomic, and cultural backgrounds. Each have unique lifestyles, experiences, and interests. As such, health care providers need to be certain we are always honoring diversity or people may not receive the services they need and deserve. Let's explore this as it relates to dementia care.
First let’s look at the prevalence of dementia in minority populations. As stated in the 2021 Alzheimer’s Association Special Report Race, Ethnicity and Alzheimer's in America, "Among people ages 65 and older, African Americans have the highest prevalence of Alzheimer's disease and related dementia's, 13.8%, followed by Hispanics, 12.2%, and non-Hispanic whites, 10.3%, American Indian and Alaska natives, 9.1%, and Asian and pacific islanders, 8.4%."
Alzheimer’s and other dementias are impacting our African American and Hispanic populations the very most.
Let’s look at just a couple of the challenges associated with delivery of quality dementia care services to our African American and other minority populations. There are two issues I want to address in this blog, and they are both directly related to the importance of understanding each person in care as unique individuals with unique backgrounds.
Evidence-Based Practice and Individualized Care
Whenever possible, it is best practice to use established protocols for addressing a diagnosis based on evidence. Of course, this is very important, but we must also be cautious to not use rigid protocols at the expense of honoring and considering individuality. Both are equally important.
In health care, we study and use available data to guide us to the best assessment and treatment strategies for persons who are living with dementia. But we don't ever want to follow a protocol so rigidly that we don’t consider how the protocol aligns with the person in our care.
- When selecting an evidence-based cognitive screening tool, we want to also understand how the screen aligns with the educational level of the client.
- When using functionally based cognitive assessments, we need to understand any cultural or personal differences regarding how someone completes their self-care and other daily routines.
- If we don’t have the client’s trust, agreement, and motivation, no cognitive screen or assessment will be accurate.
Earning Trust by Being Culturally Competent
On that note, a significant barrier to some getting the care they need is a lack of trust in research, the system, or the health professional. Going back to Race, Ethnicity and Alzheimer's in America:
People of color want health care providers who will understand their unique experiences and backgrounds, but many doubt they would have access to culturally competent providers.
- An overwhelming majority of non-white Americans say it is important for Alzheimer's and dementia care providers to understand their ethnic or racial background and experiences including Native Americans (92%), Blacks (89%), Hispanics (85%), and Asian Americans (84%).
- Fewer than half of Blacks (48%) and Native Americans (47%) feel confident there is access to providers who are culturally competent.
The ideal solution for having a culturally competent provider is to have a more racially and ethnically diverse health care workforce with similar lived experiences.
Certainly, we must make strides in that area, giving all the ability to receive an education in health care no matter their socioeconomic or other status. I’m an example of this: I received my Occupational Therapy degree as someone of lower socioeconomic status but had access to state grants and student loans. I would have been unable to afford my education without these programs. We need to make sure all people have access to these programs, free of bias or discrimination. And we must encourage and mentor minorities to pursue this education and to work in the health care fields.
In addition, all health care providers must stop and ask themselves, “What can I do right now in this moment to become more culturally aware and competent, and to help gain the trust and respect of my diverse client population?” In my opinion there is no better way to build trust than simply saying, “I hear you. I care. I seek to understand.” To understand the value of this, just think about those who you find yourself trusting the quickest or the most. I’m sure we would all agree we want to feel understood, and that goes a long way to trusting someone. So, let’s be sure we take ownership for developing a quality relationship with our client, one that is built on understanding the person in our care.
The Value of Person-Centered Care and the Allen Cognitive Disabilities Model
Does this sound familiar? The Person-Centered Care movement perhaps? Yes, it is Person-Centered Care in its essence. Several years ago, Claudia Allen, a highly regarded Occupational Therapist and a pioneer in functional cognitive assessment and intervention was talking about the importance of understanding personhood long before others.
Claudia suggested we cannot identify a person’s cognitive level or address and support their cognitive challenges unless we understand their individual preferences, history, culture, and motivation. She said we should not develop one goal without learning what the person finds meaningful or relevant.
She went on to say we should never write goals or discharge plans without understanding the person’s support systems and financial resources and what is possible for them in their life. Claudia Allen took a very person-centered approach to assessing and treating cognition, and she was highly effective.
As a young Occupational Therapist who was not yet guided by Claudia’s wisdom and her model, I made many mistakes. I made judgments on a person’s cognitive abilities related to what I thought their function should look like, not considering differences in daily routines or sequencing—differences sometimes rooted in cultural variances or preferences. I would select and introduce functional cognitive assessments and screens based upon the diagnosis, and not anything unique about the person. I wrote goals and created treatment plans almost exclusively based on evidence-based cognitive protocols and not much more.
Sadly, this out-of-touch approach often led to what we termed “non-compliance.” There was a reason for it, but that reason wasn’t the patient or client—it was me. I hadn’t put the person in care first. I hadn’t taken the time to get to know them or honor their individuality, background, and culture and therefore I didn’t earn their trust, or the client didn’t find the intervention relevant to their life.
But finally, a few years into my career and after studying Claudia Allen’s model, I understood how vital it was to always begin with learning about the person. What do they want and need to do? What do they find meaningful and relevant based upon their race, culture, or individual likes and dislikes? And so began a long career of being able to gain the trust and respect of my clients. Of being able to help.
In our current Dementia Capable Care Model, which is built upon Allen’s model, we put the person as the focal point. We get to know as much about them as possible, including what they want and need to do each day. We learn what supports they have available. We learn about their background, preferences, routines, and interests. We believe it is vital to know as much as possible about our diverse population of clients.
While we can’t spend a day walking in everyone’s shoes, if we understand and honor the critical role personhood holds, we become more culturally competent and therefore achieve more quality results.
Commit to Person-Centered Care
Being an expert at the dementia disease process is important. But the client we care for is so much more than their diagnosis. They are more than a patient; they are a person first. It is vital for us to know the person and their lived experience, and factor that into our assessments, goals, and treatment.
Until our workforce is as diverse as the population it serves, we must do everything in our power to learn about those in our care—including gaining knowledge about differences based on race, ethnicity, culture, and socioeconomic status. We must ask, listen, learn, and apply all our client tells us about who they are and what matters most to them. Only then can we hope that we have gained their respect and their all-important trust.
Won’t you join me in this goal of placing evidence-based practice and person-centered care practice in the same light? This will ensure we are both the science-driven and culturally competent provider needed to serve our aging and diverse population.
Kim Warchol, OTR/L, is the founder and President of Dementia Care Specialists at Crisis Prevention Institute.
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