Keys to Helping People Live Well with Dementia

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Kim Warchol

Kim Warchol, OTR/L, President and Founder of Dementia Care Specialists at Crisis Prevention Institute

I believe people can live well with dementia and their loved ones can feel supported along the journey. This is our mission at Dementia Care Specialists and through our work, we hope to move this forward from hope to reality.

Our goals are simple and straight forward:

  • Enable the person to stay successfully involved in meaningful activities at their best ability.
  • Support their loved ones and others who are involved in the caregiving, so they experience less stress and more success.

We must normalize everything, and not get caught up in the biased dementia paradigm traps and pitfalls. Someone who is living with dementia has the same essential wants and needs we have. But just like a child, they need understanding, adaptation, and a gentler touch. They need to feel and be prioritized for who they are and what they can offer in the moment.

How do we accomplish this you may ask? It is helpful to have our Dementia Capable Care model top of mind at all times. It is a structure that helps those who work in health care focus on the key elements of quality dementia care.

The Dementia Capable Care model and goals are all encapsulated within:

  • An imperative perspective of person first, never disease first.
  • Steadfastly sticking to a focus on abilities, discovering and prioritizing what the person can do, while supporting their lost capabilities.
  • A guiding belief that suffering is not inevitable, but quality of life is very much a possibility.

I love to talk with like-minded, passionate individuals like Penny Cook, who are advocates for person-centered, dementia supportive care. I have always found good things happen when we work together to foster change.

In our first podcast, Listen, Learn, Explore Episode 15: Distress Behavior Intervention – We have a Solution, we talked about distress “behaviors.” Notice I put the word behaviors in quotations. We believe behavior is a form of communication and not a symptom of dementia. We focus on the importance of normalizing the behavioral expressions we see, knowing we must interpret anxiety, agitation, and aggression as a communication of a want or need or that something is wrong. It is our responsibility to do something to address the problem that is creating these feelings of distress.

When we apply person-centered care as a lens to understand distress communications, we gain even more critical insight to help us prevent or de-escalate behavior. We find the root cause that triggered the behavior everywhere we look. And we can change behavior, without the use of pharmaceuticals. Drugs won’t be required if we can simply step back and say, “What do I know about this person in my care that could be the reason for their distress?” For example – I don’t like to be cold, so if you put me in a cold room, I will feel uncomfortable and become agitated or resistive. It’s that simple.

In our second podcast Listen, Learn Explore Episode 18: The Importance of Family Collaboration for Quality Dementia Care, we spoke about the importance of collaborating with families and loved ones of those living with dementia. We must learn as much as possible from the loved ones to provide person-centered care. We must collaborate, educate and support loved ones along their journey.

We should share common understandings, perspectives, expectations, and approaches. When we use the same language to describe observed distress behaviors, we are far more effective to assess and monitor. It is ideal for staff and families to be trained in the same models and approaches. Essentially, we are creating one team that can confidently and competently work together towards common goals.

I believe we can make the world a better place for those living with dementia. After all, isn’t an elder with dementia at the end of life just as deserving as a child at the beginning of life?

I hope you will join us in reaching higher to help this vulnerable, precious population, and their loved ones, to thrive.

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