“Person-Centered Care for People With Dementia.” This was a forum offered during an annual conference of the American Society on Aging held in Chicago. Open to professionals from a wide range of healthcare, residential care, and home and community-based care settings, the focus was on non-pharmaceutical treatment and care.
The forum was held in late March 2015. I originally published the summary which follows as a blog addressed to physicians. It is reprinted here with some editorial changes.
How Far Have We Come since 2015?
Person-centered care as defined by the forum is “being respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.”
What it’s not is doctor-centered care, nurse-centered care, nursing team-centered care, and nursing home-centered care.
An Urgent Need for Change
If one were to judge mission and philosophy statements included in every four-color healthcare brochure, “person-centered care” is a high priority in every organization.
However, it was apparent from the presentations of expert panelists, the audience questions, and group discussion that the person-centered care movement has a long way to grow in caring for people with dementia.
Many of the professionals in attendance are themselves now also caregivers of elder parents or other family members – thus evoking up-front, personal, and sometimes emotional expressions about the urgent need for change.
While some attendees were influenced by the work of Carl Rogers (1902-1987) who developed the approach to person-centered care through client-centered counseling, it was Thomas Kitwood (1937-1998) and other pioneers who applied the approach to the field of dementia care. It was Kitwood who coined the term “personhood” – which reinforces the image of the person with dementia as a “whole person – a source of wisdom and experience.”
Through a new lens
Selected paraphrased notes from each panelist’s presentation follow below. The ideas may resonate deeply with those who have been closely involved in caring for a person with dementia.
These expert presenters are representative of the quality of providers we would all want to have guiding the care of our elders – or our own care. They are professionals speaking from both professional, and sometimes, personal experience as well.
These ten tips are intended for the team of carers – and intermingled here – for the various roles of the care partner team. The team includes the person living with dementia and the physician provider.
1. Seek to understand person-centered care.
Care is more than keeping people safe and helping with daily tasks. . . If we could get faith-based organizations to understand person-centered care, we would change the community. (Benjamin Mast, PhD, Associate Professor, Psychological and Brain Sciences, University of Louisville)
2. Speak about living with dementia.
To see a friend diagnosed with dementia is to see “stigma” quickly follow along. . . We need to stop talking about people suffering with dementia, and instead speak about them as living with dementia. (Kathy Greenlee, JD, Administrator of Administration on Community Living and Assistant Secretary for Aging, US Department of Health and Human Services)
3. Record wishes and directives – for listening at a later date.
Pick a surrogate who can live without you. Record your wishes, so that anyone who doubts directives can listen to them. Suggested resources: ACP Decisions (Advance Care Planning), MyDirectives.com, PrepareForYourCare.org “Patient-centered care” is a new concept in medicine. In practice, it means talking with the patient, not in front of them. (Ken Brummel-Smith, MD, Charlotte Edwards Maguire Professor and Chair Department of Geriatrics, Florida State University College of Medicine)
4. Process this key question.
Processing this question changed my life! “What are your five wishes?” I was asked by my physician, Dr. Brummel-Smith (above). I then planned for how I wanted to live my life. (Alexander “Sandy” Halperin, DDS, Retired Professor, Advocate, Person with dementia)
5. Become their memory! Share their story!
To support the “self” of the person with dementia, become their “prosthetic memory”! Hold their story! Share it with others! . . . Calling the disease a “loss of self” leads to non-person-centered care. “Self” is more than memory. (Sam Fazio, PhD, Director of Special Projects, Constituent Services, Alzheimer’s Association)
6. Acknowledge a shift in roles.
Person-centered care extends to family. Everyone’s roles shift. . . Dementia is not just physiological – it is relational. (Darby Morhardt, PhD, Research Associate Professor and Director of Education, the Cognitive Neurology and Alzheimer’s Disease Center, Northwestern University Feinberg School of Medicine)
7. Inspire and support others.
Dementia is the only diagnosis where people are told to go home and give up. Is change happening? Not in a big way! Who are the dementia stakeholders? Everyone! (Karen Love, President and Founder, CCAL-Advancing Person-Centered Living)
8. Check your narrative – and stay connected.
If we have a narrative of despair, we are “afraid” and looking for a quick fix. If we have a narrative of hope, we stay connected. . . I believe that relationships are in the present moment, not about re-creating past moments. . . Identity comes through other people – we can make a difference! The hard-wired abilities we have never leave us. We don’t have to teach children to dance when there’s music! (John Zeisel, PhD, President and Co-Founder, Hearthstone Alzheimer’s Care)
9. Be Carl Rogers.
It’s about valuing people and those who care for them, the closeness of which is sacred.
Before Thomas Kitwood (1937-1998), it was Carl Rogers (1902-1987). So . . . we’re asking one nurse assistant to be Carl Rogers with 8 – 12 people… We have now created homes where the carers are supported so they can be Carl Rogers. (Anna Ortigara, RN, MS, FAAN, Organizational Change Consultant, Paraprofessional Healthcare Institute)
10. Just connect.
We must simplify things. It doesn’t have to cost a lot. Forget “dementia” . . . Just connect! (Patrick Doyle, PhD, Corporate Director of Dementia Care Services, Brightview Senior Living)
Author: Susan Troyer
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