National Dementia Initiative
A concern about the overall state of dementia care in the U.S. led to the organization of a grassroots effort of national dementia care experts from across the country to come together and discuss the overall lack of quality dementia care in general and the overuse of antipsychotic medications for people who have dementia in particular. This effort became known as the Dementia Initiative.
As discussions among the 60+ diverse dementia care experts got underway in the Spring of 2011, it quickly became evident that the experts were in unanimous agreement that the foundational problem was the mindset of care provision. Currently care and support for people who have dementia (or any other health condition) is based upon a medical/disease-centered philosophy. There needs to be a philosophical and practice change to what has become known as the gold standard – person-centered care. The Dementia Initiative participants determined that a consensus white paper was needed to clearly describe and detail person-centered dementia care. This paper, “Dementia Care: The Quality Chasm”, was published in January 2013.
The paper is intended for a wide and diverse audience of readers since dementia care impacts a broad spectrum of stakeholders including: people living with dementia, family members and other care partners, service providers, healthcare practitioners, policy-makers, researchers, consumer advocates, funders, academicians, and regulators among others. All too often information is written and disseminated for individual audiences and not shared among all those who are impacted by the topic. This limitation impedes the collective understanding of issues and solutions to address them. “Dementia Care: The Quality Chasm” is written with all stakeholders in mind so that this societal challenge can be addressed and person-centered practices advanced.
In the United States, healthcare systems and processes were designed around efficiency and standardization. Efficiency and standardization was an effective model for the industrial age that needed to mass produce materials and equipment, however, it turned out not to be an effective design for healthcare. The Institute of Medicine (IOM) in its seminal 2001 “Crossing the Quality Chasm” report described healthcare in America as impersonal and fragmented. A healthcare redesign was needed that shifted away from the traditional medical/disease-centered approach to care to a person-centered one.
Depending upon the constituency, numerous terms for person-centeredness are used such as patient-centered, resident-centered, person-directed, and relationship-centered. The most commonly used term is person-centered and as such was adopted by the Dementia Initiative experts.
The person-centered approach to healthcare emerged from humanistic psychology and the important work of Carl Rogers and Abraham Maslow. Humanism is based on the fact that people are more than physical beings. As such, care needs to be focused on them as a whole. The whole includes a psychosocial, spiritual context as well as physical. Person-centered practices move beyond the physical context and include the whole being. Person-centered practices are more pleasant to experience, help to optimize health and well-being outcomes, and result in higher satisfaction.
Person-Centered Dementia Care
The term “dementia” refers to a group of symptoms typically characterized by a loss of cognitive and intellectual ability, impairment in memory, and brain changes affecting areas such as language, reasoning, and judgment severe enough to interfere with everyday functioning. Dementia can be caused by many conditions, the most common of which is Alzheimer’s disease.
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.
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. Given the already staggering financial and caregiving demands of dementia, this country is facing significant if not crippling societal challenges if effective ways are not used soon to better manage the care, services and supports for people living with dementia and their care partners. Person-centered care has been found to not only be very effective, but is the most personal and considerate type of care.
The Dementia Initiative consensus core values and philosophy for person-centered dementia care are:
- 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.