Humanizing and changing dementia care
The passage of the National Alzheimer's Plan Act (NAPA) of 2011 and the subsequent creation of a national Alzheimer's plan were catalysts to convene a meeting in Washington, DC on June 29. This large, diverse group of dedicated dementia experts from across the country represented the practice, policy, and research sectors to discuss the current state of dementia care knowledge, practices, and approach to caring for people living with Alzheimer's disease and related dementias.
This effort, known as the Dementia Initiative, germinated from the belief that there is a moral and ethical societal imperative to view and understand people living with dementia as whole beings, and not from the framework of his/her health condition. The importance for a wider national discussion was quickly evident as the dementia experts began a lively exchange of comments and thoughts in advance of the meeting.
“Humanizing dementia care is a human rights issue.” Kim McRae
A key point raised in pre-meeting exchanges was the urgent need to transform dementia care across our country to a personalized and humanizing experience. The knowledge, expertise, and practice experience for such transformation already exist; the problem is that it is not widely valued or supported despite strong evidence of improved outcomes.
Similar humanistic transformations in healthcare, e.g., birthing and end-of-life, have been valued, supported, and widely inculcated throughout the country. Up until the 1970s, birthing mothers were treated more like passive victims than active participants. They were often anesthetized to manage pain and not conscious during birth so they didn't even see their baby until sometime later, and fathers were banished to the waiting room. However, the birthing experience in today's U.S. hospitals is typically a pleasant and personalized experience, with all elements (e.g., staff attitude/approach; calm and homelike environment; family involvement ) working in concert to achieve the ultimate goal of fostering an excellent clinical AND emotional experience for mother, baby and father.
The other end of life's spectrum – death – used to be similarly dehumanizing. Dame Cicely Saunders, a physician specializing in care for dying patients in London in the late 1940s, began the work that would eventually change the dying experience to make it a personalized and emotionally supportive one through hospice care. While healthcare and well-being is person-centered for the birthing and dying experience, it is not consistently so for life in-between.
This is dramatically apparent in the current calls for better “nonpharmacological interventions” for dementia care. Even the term “nonpharmacological intervention” suggests a bias towards addressing the needs of people living with dementia through a medical perspective. Over 50 Dementia Initiative participants noted this imbalanced approach and convened, at their own expense, in Washington, DC on June 29 to form consensus recommendations for reframing the contextual approach and practices for caring for people living with dementia.
One of the first orders of business was a request to form consensus agreement on the terms that should be used. The participants recommended using the term “people living with dementia” because it honors the whole personhood of the individual instead of a singular focus on their disability. The participants also recommended that an acronym not be used (e.g., PLWD) nor the use of the term “patient” since both are dehumanizing terms. The recommended term instead of “nonpharmacological interventions” is “dementia care practices.” Lastly, the Dementia Initiative participants recommended that the term used to describe the people providing care (e.g., family, friend, paraprofessionals, and professionals) as “care partners” instead of caregivers.
Reframing Care Context
Besides the importance of addressing terminology, the consensus was that the context for caring for people living with dementia needed to be reframed. Generally research and writings about dementia care approach the subject as if it were uni-dimensional. This inaccurate context sets the wrong course from the outset, resulting in practices and other actions not grounded in a thorough understanding about dementia care.
Dementia care is multi-dimensional and its effectiveness depends on implementing all the aspects in tandem including:
- the values, purpose, and goals of effective dementia care;
- the knowledge, skills, and support for care partners;
- the key constructs of communication techniques, relationships, and the physical and social environment;
- the skillful approaches care partners use; and
- the holistic attention to mind, body, and spirit well-being to support wholeness, enjoyment of daily life, and functionality.
There is no better time for our nation to reframe dementia care as NAPA and other dementia efforts can provide valuable, organized pathways to transformation, dissemination, and, most importantly, utilization. The need for a transformed approach and practices applies just as much to healthcare practitioners and providers of services as it does to care partners. Everyone needs to think and act differently. Let's start by renaming “dementia care” to “dementia caring." This helps reorient the relationship to one of respect, trust, and supporting positive outcomes.
Karen Love is the founder and Jackie Pinkowitz is the board chairwoman of CCAL, Advancing Person-Centered Living.