Crossing the quality chasm in dementia care
“Within all of us resides the need to be whole.” Oliver Sacks, M.D.
“Humanizing and changing dementia care” (McKnight's, Aug. 3, 2012) described the genesis of the Dementia Initiative, a collaborative effort among a dedicated group of dementia experts representing the practice, policy, and research sectors from across the country to delineate a holistic (bio-psycho-social-spiritual) theoretical and contextual consensus framework for person-centered dementia care.
A consensus white paper was prepared from this extraordinary collaborative. The white paper, “Dementia Care: The Quality Chasm, as well as other information about the effort can be accessed at http://www.ccal.org/national-dementia-initiative/
Crossing the Quality Chasm
The seminal 2001 Institute of Medicine's (IOM) report titled “Crossing the Quality Chasm” called for a redesign of our nation's healthcare system, and described healthcare in America as impersonal and fragmented. The IOM report stated that a critical element needed in the redesign was a shift to a person-centered approach moving away from the traditional clinician/disease centered approach.
Twelve years later, the title of the Initiative's white paper, “Dementia Care: The Quality Chasm,” was purposefully selected as a nod to the IOM's red flag warning about our nation's impersonal and fragmented healthcare systems and practices. The current bio-medical approach to healthcare including dementia care focuses almost exclusively on the physical condition of a person. Health and well-being, however, are contingent upon the holistic integration of one's bio-psycho-social-spiritual dimensions. The separation or disregard of these interconnected dimensions created the impersonal and fragmented healthcare culture.
All too often, dementia care in this country reflects that impersonal and fragmented culture. Today, 5.4 million Americans are living with Alzheimer's disease in the United States — 5.2 million aged 65 and over, and 200,000 under the age of 65. By 2050, up to 16 million will have the disease. Currently, one in every 8 Americans age 65 and older has Alzheimer's, and nearly half of people age 85 and older have the disease. Providing services and supports for people with Alzheimer's and other dementias was estimated to cost the United States about $200 billion in 2012 alone; $140 billion of which is paid by Medicare and Medicaid. In 2011, 15.2 million family and friends provided 17.4 billion hours of unpaid care to those with dementias — valued at $210.5 billion (Alzheimer's Association, 2012).
Alzheimer's disease is the sixth leading cause of death in the United States and the only cause of death among the top ten that cannot be prevented or cured. Dementia is the leading cause for placing someone in a long-term care setting such as an assisted living facility or a nursing home. The prevalence of Alzheimer's is expected to increase three-fold over the next 35 years (Alzheimer's Association, 2012).
Catalyst for Transformation
The Dementia Initiative white paper represents a consensus call to action for all stakeholders to make the commitment to transform our nation's dementia care culture into a person-centered one. These experts believe we have a moral and ethical societal responsibility to support the “personhood” of each individual living with dementia by honoring the following consensus core values: Effective person-centered systems and practices emerged from humanistic psychology and the seminal work of Carl Rogers and Abraham Maslow. Humanism is based on the understanding that people are multi-dimensional beings, and the psychosocial context of health and well-being is as important as the physical/medical aspects. Holistic person-centered practices move beyond the current bio-medical approach. Indeed, they are considered the gold standard. A growing body of empirical evidence indicates that person-centered practices are more pleasant to experience, help to optimize health and well-being outcomes, and result in higher satisfaction.
- Every person has his/her own meaning of life, authenticity (personality, spirit and character), history, interests, personal preferences, and needs to continue to experience life at all stages of dementia. The person is not their dementia illness; rather the condition is only one aspect of their current status.
- Focus on the strengths of the person living with dementia rather than on what abilities and capabilities have been diminished or lost.
- “Enter the world” of the person living with dementia to best understand, communicate with, and interpret the meaning of his/her behavioral expressions from their perspective. The white paper is intended to serve as a catalyst for transformation by setting forth a multi-dimensional, interconnected framework that can enhance stakeholders' awareness, knowledge, and understanding to effectively implement policies and practices to advance relationship-based dementia care, in any home, community-based, or residential setting.
The framework specifically addresses and illustrates:
- Foundational values, purpose, goals, and language;
- Contextual, structural and operational elements; and
- Relationship-based skills and approaches
Given the already staggering financial and caregiving demands of dementia, the U.S. is facing significant, if not crippling, societal challenges if effective person-centered systems and practices are not implemented soon to address and better manage the care, services, and supports for people living with dementia and their care partners.
The Change We Seek
We invite all stakeholders to read the Dementia Initiative's white paper; engage in thoughtful, open-minded and open-hearted discussion with other stakeholders and become change agents to advance a person-centered healthcare culture in our country.
As President Obama so eloquently said: “Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek.”
Jackie Pinkowitz is Board Chairwoman and Karen Love is the founder of CCAL-Advancing Person-Centered Living.