The Permanence of Personhood: Person-Centered Care for Those With Alzheimer's and Dementia
Updated: Sep 16, 2021
Person- and relational-centered care concepts originate as far back as 1949 in the foundational work of Carl Rogers and his approach to client-centered psychology. Then, as discussed in yesterday's post, in 1997, Tom Kitwood wrote a seminal book titled, Dementia Reconsidered: The Person Comes First. In it, he discusses how individuals living with dementia have an enduring sense of self, and maintain feelings, preferences and personality characteristics until the end of life.
Today, variations on Kitwood’s person- and relational-centered care practices are accepted as the gold standard for healthcare by the World Health Organization and the Institute of Medicine. However, the general perception of dementia, has traditionally and more commonly, focused on cognitive losses and functional impairments rather than on proactive approaches focused on understanding individual symptoms and person-centered strategies for disease management.
As a person loses their memories, brain functions, and ultimately, bodily functions, they still retain their personhood. They deserve to be treated with the utmost dignity and respect, and to have others show them that their lives are valued and appreciated.
In 2018, the Alzheimer's Association published their "Dementia Care Practice Recommendations." With the fundamentals of person-centered care at the foundation, the "Dementia Care Practice Recommendations" illustrate the goals of quality dementia care in several areas, as shown in the following figure:
For each of the nine areas described, specific care practice recommendations are provided. The Practice Recommendations for Person-Centered Care (Fazio, Pace, Flinner, & Kallmyer, 2018) are the foundation of the framework. The recommendations are:
Know the person living with dementia
The individual living with dementia is more than a diagnosis. It is important to know the unique and complete person, including his/her values, beliefs, interests, abilities, likes, and dislikes—both past and present. This information should inform every interaction and experience.
Recognize and accept the person’s reality
It is important to see the world from the perspective of the individual living with dementia. Doing so recognizes behavior as a form of communication, thereby promoting effective and empathetic communication that validates feelings and connects with the individual in his/her reality.
Identify and support ongoing opportunities for meaningful engagement
Every experience and interaction can be seen as an opportunity for engagement. Engagement should be meaningful to, and purposeful for, the individual living with dementia. It should support interests and preferences, allow for choice and success, and recognize that even when the dementia is most severe, the person can experience joy, comfort, and meaning in life.
Build and nurture authentic, caring relationships
Persons living with dementia should be part of relationships that treat them with dignity and respect, and where their individuality is always supported. This type of caring relationship is about being present and concentrating on the interaction, rather than the task. It is about “doing with” rather than “doing for” as part of a supportive and mutually beneficial relationship.
Create and maintain a supportive community for individuals, families, and staff
A supportive community allows for comfort and creates opportunities for success. It is a community that values each person and respects individual differences, celebrates accomplishments and occasions, and provides access to and opportunities for autonomy, engagement, and shared experiences.
Evaluate care practices regularly and make appropriate changes
Several tools are available to assess person-centered care practices for people living with dementia. It is important to regularly evaluate practices and models, share findings, and make changes to interactions, programs, and practices as needed.
Person- and relational-centered care is recognized as the gold standard for healthcare in general, and certainly should be recognized as such for Alzheimer's and dementia care. As a person loses their memories, brain functions, and ultimately, bodily functions, they still retain their personhood. They deserve to be treated with the utmost dignity and respect, and to have others show them that their lives are valued and appreciated.
Visit the Alzheimer's Association website to learn more about the 2018 Dementia Care Practice Recommendations at https://www.alz.org/professionals/professional-providers/dementia_care_practice_recommendations.