In 2001, the Institute on Medicine released a seminal report titled “Crossing the Quality Chasm” that called for a redesign of the nation’s healthcare system and described healthcare in America as impersonal and fragmented (IOM, 2001). The report noted that a critical element needed in redesigning the healthcare system was a shift to person-centered practices. These practices are rooted in humanistic psychology and the work of Carl Rogers and Abraham Maslow among others. Unfortunately, little progress has been made in the past dozen years to transform systems and practices to support person-centered outcomes. Recently, a group of concerned national dementia care experts decided to focus on advancing person-centered values and practices for dementia care.
Several significant events occurred in 2011 that catalyzed the gathering of this group of diverse dementia care experts representing the practice, policy, and research sectors to form consensus on a definition and conceptual framework for person-centered dementia care. This initiative is known as the Dementia Initiative. In early 2011, President Obama signed the National Alzheimer’s Project Act (NAPA) into law. Part of the law mandated the formation of an advisory council to make recommendations to the Secretary of the Department of Health and Human Services on actions to expand and coordinate programs to improve the health outcomes of people who have dementia. NAPA was viewed by many dementia care experts as an opportunity to spotlight and advance the implementation of person-centered dementia care practices. Sadly, NAPA’s primary focus has been on the ‘cure’ aspects of Alzheimer’s disease. The little focus given to dementia ‘care’ has been silent on person-centeredness.
In late 2011, the U.S. Senate Subcommittee on Aging held a hearing focused on the overutilization of antipsychotic medications for nursing home residents with dementia and the need for alternative care strategies other than automatically giving antipsychotic medications for what are perceived as behavioral challenges exhibited by people who have dementia. These behaviors are often expressions of unmet needs such as pain, hunger, thirst, boredom, loneliness, or an underlying medical condition that a person who has dementia is challenged to verbally communicate to a care partner or to address him or herself. Person-centered practices, considered the gold standard by the IOM and the World Health Organization (WHO, 2012), are oriented to the person and thus understanding and addressing the cause of the behavior being expressed.
A person-centered model of care reorients the medical-disease model of care that can be experienced as impersonal and fragmented to one oriented to holistic well-being that encompasses all four human dimensions – bio-psycho-social-spiritual. Person-centered care recognizes this multi-dimensionality dynamic and reorients practices to be delivered in a manner that is positively experienced which, in turn, helps promote holistic well-being.
A recently published article in Health Affairs describes person-centered care from one individual’s experience. While the example describes the experience of someone with a mental illness and not dementia, if a person who has dementia could publish an article in a national publication, they would likely echo this person’s sentiment. Ashley Clayton, a Yale University researcher, suffered for many years in her teens with mental illness. In the article, she describes the care she experienced when hospitalized and how receiving care in a person-centered manner helped her immeasurably. “The nurses got to know me and could support me in ways that were personally meaningful…These might sound like little things – a soda, an art project, a few minutes spent talking…Nothing they did cost extra money or required intensive training, but the fact that they saw me as a person – and treated me like one – helped restore my dignity and sense of personhood” (Clayton, 2013).
The diverse Dementia Initiative experts gathered for a one-day meeting in Washington, DC in June 2012 to form consensus about the definition and conceptual framework of person-centered dementia care. Discussions and email exchanges continued over the course of the next six months. In January 2013 a white paper titled “Dementia Care: The Quality Chasm” that provides the consensus definition and framework for person-centered dementia care was published. The white paper can be accessed online at http://www.ccal.org/national-dementia-initiative/white-paper.
There is no better time for our nation to “cross the quality chasm” for dementia care as NAPA and other national dementia initiatives provide timely pathways to spotlight and transform systems and practices of care to person-centered ones. Successfully evolving to person-centered dementia care practices will require the efforts of all stakeholders including individuals living with early stage dementia, family members and other care partners, healthcare practitioners, long-term care service and support providers, consumer advocates, policy-makers, researchers, funders, regulators, academicians, and scholars among others. The Dementia Initiative white paper provides the blueprint to transform dementia care values, systems and practices in this country to person-centered ones. With 5.4 million Americans living with dementia today and the number projected to increase three-fold by 2050, there is not a moment to lose.
Karen Love is a former speech therapist and long-term care administrator with more than 25 years of experience operationalizing and advancing person-centered practices in all long-term service and support settings. Ms. Love has been co-investigator of numerous research projects to study the effects of and advance knowledge and evidence about person-centered values and practices. Karenlove4@verizon.net
Clayton, A. (2013). How ‘person-centered’ care helped guide me toward recovery from mental illness. Health Affairs, 32(2): 622-626.
Institute on Medicine. (2001). Crossing the quality chasm. Washington, DC: Institute on Medicine.
World Health Organization & Alzheimer’s Disease International. (2012). Dementia: A public health priority. United Kingdom: World Health Organization.