Understanding Distress and How to be a Better Care Partner

Partnering in care with a person living with dementia is a calling or profession for some people and for some of us, we become a care partner for a person in our personal life.

There are ways to interact with each other that can decrease the distress experienced by everyone involved. You must shift how you view your role in the relationship and how you define what you see happening for the person living with dementia, including how they interact with the world around them.

Distress is physical, emotional, or psychological discomfort and anyone can feel distressed, regardless of age, ability, or diagnosis. So often one assumes that once a person receives a dementia diagnosis that any sign of distress is then directly related to that diagnosis.

• Don’t you get frustrated when you can’t communicate something clearly to a coworker or a spouse?
• How do you react? Do your emotions rise, maybe you get a little angry?
• What do your non-verbal signals look like, maybe you throw your hands up or let out a groan of frustration?

Now imagine that this situation happens with more frequency as your brain changes and the people around you don’t lean in to interact with you in a different way. Someone living with dementia doesn’t “all of sudden” become agitated, they are giving their care partners normal human signals of their frustration around an unmet need.

Dr. Al Power, a world-renowned geriatrician, gives us a powerful reframing of dementia in his course Decoding Distress and dives into specific tools that can be used to understand what is happening in the moment for someone in distress. He also shares an approach to care conferences based on the Eden Alternative Domains of Well-Being© and face-to-face approaches to partnering in care.

Do’s and Don’ts of Partnering in Care

Every person is unique, which means every care partnership is also unique. Any list that tells you exactly what to do or not to do without acknowledging this fact is likely not based in person-directed care. With that said, here are some ways that you can approach a care partnership that supports everyone involved. In the don’t list, although these may be things that work in the short-term, these frequently used practices can erode trust and increase distress.

Do:

• Stay calm: Energy is contagious. Take a deep breath and maintain a relaxed posture.
• Be curious: Learn about the person and what is meaningful to them.
• Validate their feelings: Let them know that you recognize their distress and are there to support them.
• Use decoding tools: A medical, environmental, or experiential audit are wonderful tools to help figure out what another person is experiencing and where their distress may be coming from.

Don’t:

• Reorient: Rather than attempt to bring the person into your reality, be curious about what their experienced reality is.
• Redirect: By not acknowledging their experience in the moment, you minimize what they’re feeling and invalidate their experience.
• Distract: This keeps you from learning what the person is experiencing and why. It again invalidates their experience.
• Deceive: A relationship, in any form, needs to be built on trust.

Building a Supportive Relationship

Being a care partner for someone living with dementia is about building trust and understanding. By shifting your own framework about what dementia is and having tools to use to partner in care with someone living with dementia, you can create a safe and nurturing environment for everyone involved. The goal is well-being for all and with a shift in your heart, mind, and actions you can work together to achieve it.

Learn to embrace the journey with patience and love and remember that you’re not alone.

Want to dig into this topic more?
I hope you’ll join me in two coaching calls that support Dr. Al Power’s self-study course: Decoding Distress, in December. For details on the course, click here: https://www.edenalt-evolve.org/courses/decoding-distress-proactive-strategies-for-living-well-with-dementia

About The Eden Alternative

Our Mission: To improve the well-being of Elders and their care partners by transforming the communities in which they live and work. 

The Eden Alternative offers educational opportunities, consultation and a proven approach to honoring Elderhood, with resources for Elders and care partners to elevate well-being wherever they may live and work.