Dementia, including Alzheimer’s disease, confronts us with a challenge: How do we live fully – with dignity, meaning and happiness – in the face of progressive disability and, ultimately, death? Those living with dementia have cognitive and decision-making impairments that often make them unable to answer this question. And when those who provide care and services for them fail to recognize what is meaningful, positive and pleasurable for persons with dementia, they suffer. Furthermore, we need a health care system that fosters dementia-capable caregiving, so that everyone has the opportunity to live fully, with dignity and well-being. Why don’t we have such a system, and what do we need to do to achieve it?
In a New York Times editorial last year (“Too Young to Die, Too Old to Worry,” Sept. 20, 2014), Jason Karlawish, MD, a professor of medicine, medical ethics and health policy at the University of Pennsylvania, presented a thought-provoking question: “When should we set aside a life lived for the future, and, instead, embrace the pleasures of the present?” He also offered this challenge: “A national investment in communities and services that improve the quality of our aging lives might help us to achieve this.”
Dr. Karlawish, who will present a keynote address at the 2015 AMDA annual conference in Louisville this month, reminds us that this issue is highly significant for those living with dementia, including Alzheimer’s disease, and their care partners, as they are on the front line in considering the lingering question of how to live fully with the time they have left. Is it an absolute necessity that living with dementia means a life spent “fighting the disease” – or can we posit that a life lived fully is actually a higher value?
“Aging in the 21st century is all about risk and its reduction,” says Karlawish. “Today, 3.6 percent of the [U.S.] population is over 80, and life is heavily prescribed not only with the behaviors we should avoid, but the medications we ought to take. More than half of adults age 65 and older are taking five or more medications or supplements, many of them designed not to treat acute suffering, but instead, to reduce the chances of future suffering.”
Often, families and other care partners think they are doing the right thing for their loved ones by imposing burdensome treatments or interventions. But Dr. Karlawish suggests we ask family members what constitutes a good day even when a person has advanced dementia. “We need to focus on what gives pleasure now, in the present,” he says. This can be a challenge, but it’s an important one. “When individuals have dementia, their lives – their very selves – are constructed by the people around them. We shape their personhood, and that is a tremendous moral responsibility.”*
Taking on this responsibility is at the essence of person-centered care – a concept at the very heart of what we call “dementia-capable” models of care delivery, communities, and caregivers. Let’s work together to bring such a system into being. An entire generation of those living with dementia, and their care partners, deserve no less.
*Excerpted from “Keynoter Puts Patient Pleasure First,” Caring for the Ages, January 2015.