THE BLOG
08/14/2013 12:42 pm ET | Updated Oct 14, 2013

Ethics of Care: Guiding the Treatment of Dementia in the 21st Century

The United States is on the precipice of an overwhelming public health challenge. Assisted living is home to almost 1 million seniors already; as the baby boomer generation continues to move from middle age into their retirement years, the number will surely grow. The U.S. Administration on Aging predicts that by 2030, there will be about 72.1 million Americans over 60 years old.

The good news is that advances in medical science are keeping seniors physically more able and active than ever before. The flip side is that living longer means more and more aging adults are facing a new set of health challenges: dementia and pervasive cognitive decline. According to the Alzheimer's Association 2013 Alzheimer's Disease Facts and Figures, 13.9 percent of people over the age of 71 have dementia.

The Burden Of Dementia

We aren't prepared for the medical issues that will accompany the impending demographic shift. Many of the tremendous burdens facing our health care system can be traced to the growing issue of dementia -- from the problems of relying on Medicare to cover progressive disease to the issues arising from for-profit assisted living.

The way dementia is typically portrayed in popular media is nowhere near reality. It isn't simply an absent-minded senior forgetful of his surroundings; the grim truth is that advanced dementia removes even one's most basic functions, often taking a patient past the ability to communicate, swallow, go to the toilet, or walk. Such individuals become completely dependent on others for everything, including decisions about care and extending their lives.

This is a much different type of caregiving than simply making sure a patient gets her meds or does her physical rehabilitation program; working with dementia patients requires a subtle, holistic, and ethically-based approach.

But it's not that easy. A study published in PLOS Medicine, for example, highlights the gaps in our current treatment guidelines when it comes to ethical decision-making processes -- how a nurse ultimately makes a call, for instance, when a family's religious beliefs don't match up with the evidence-based recommendation for the next stage in treatment.

As the population of seniors (and seniors with dementia) grows, so will the attendant senior and memory care industry. With thousands of new care providers about to integrate into the senior health industry, there will be many, many people making many, many important care decisions.

Ethics In Health Care

Throughout the Western world, the practice of medicine is directed by "clinical practice guidelines," or CPGs. In theory, CPGs contain all the best evidence-based information on the benefits and harms of various care options for any given disease, and are well-studied and used by caregivers in clinical settings. These CPGs do include some element of ethical decision making, typically based on four agreed-upon tenets of bioethics, explained in depth at the University of Washington website: patient autonomy, beneficence, non-maleficence (do-no-harm), and justice (equal access to care).

While the principles are great in theory, they muddy up quickly when a specific disease -- like dementia -- doesn't play nicely with the principles.

For example, a woman with dementia may have lost her capacity for short-term memory and is living in the past. Perhaps she keeps looking for her husband, when in reality, he died 10 years ago. Should her nurse tell her the truth? Forcing her to relive the death of her husband may be extremely emotionally taxing -- so is it okay to lie? Lying to a cognizant patient clearly violates patient autonomy, but in the interest of beneficence, perhaps it is more ethical, in this case, to bend the truth.

But how do caregivers know how best to make these ethical and moral choices?

Ethics In Dementia Care

Setting aside the fact that some issues are ignored entirely by CPGs -- suicidality is of particular note, considering that suicide rates are high, and growing, among the elderly -- the bigger issue is the disconnect between the codified guidelines and the implementation on the ground.

Partially, this stems from an issue of translation that comes from cultural relativity.

"Judgments about [what is] morally right or wrong are culturally-specific and sensitive," says Daniel Strech, professor at the Hannover Medical School, and lead author of the study.

Mary Ersek, an associate professor at the University of Pennsylvania School of Nursing, agrees. "Years ago, we used to practice re-orientation," Ersek explains, referring to a practice where clinicians would tell the truth to a patient with dementia, even if it causes emotional distress. "But now, standard practice is not to say anything. Because what does she gain from that?"

Ersek says that she teaches her nursing students to look at the individual situation and ask "What is the meaning of that experience to that person?" But she also admits that it's not like the instructions for that type of practice came from a book or guidelines. It's stuff that has to be learned, on the job -- and nursing schools do try to prepare their students for the important decisions points that have emotional and ethical overlays. For example, compassionate care programs will include things like spending a full day strapped in a wheelchair, so nurses understand the emotional impact of feeling trapped that their future patients may face.

"As a clinician, I have a moral and professional obligation to know what's in the guidelines," says Ersek. "[But] you can't put everything in the guideline." In her mind, clinical practice cannot be divorced from ethical practice. The translation of the guidelines, in essence, is a moral undertaking.

This makes sense. We develop guidelines that lay out the best options we have for care, then rely on the nurses on the ground to present, with their best judgement, the options to the decision-makers: the children, partners, and other family members of the patients. But there's a lot of room for human error in there.

"The question 'Who is responsible for determining morally acceptable (or inacceptable) practices in dementia care?' is crucial," says Strech. The issue is far from black and white, and as Strech explains, even otherwise "fair-minded" people can disagree on ethical issues, with both sides seeming to have equally good reason to do so.

We hope that those making the decisions have the right motive in mind: the best interest of the patients in their stead. Unfortunately, this is not always the case; not everyone is as well-trained as Ersek and her students, and many families cannot afford high-quality skilled nursing facilities. A joint ProPublica and PBS Frontline video report, for example, recently outed the lax -- and unethical -- level of care in the growing for-profit assisted living facilities industry. The report found that caregivers in these facilities often follow the letter of the law, but ignore the ethical nuances that both Ersek and Strech have emphasized.

The best we can hope for, says Strech, is a stronger set of ethical guidelines, created by multifaceted teams of medical professionals, patient representatives, and ethics experts, along with other stakeholders. The goal, he says, is "a raised awareness and increased sensitivity for disease-specific ethical instructions."

Ultimately -- unless D.C. steps in -- there is no way to guarantee better dementia care for all patients. But perhaps, as Strech and his team suggest, the first step is to make the ethical issues so obvious that they can no longer be ignored.

Special thanks to Cindy del Rosario at the University of Pennsylvania School of Nursing, who assisted with reporting on this subject.

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