Is it OK to Lie to a Person with Dementia? A Look at Ethical Care

About Juliet Holt Klinger

Senior Director of Dementia Care

Juliet is a passionate advocate for people living with dementia and their families. She is deeply committed to improving the cultural acceptance of those with cognitive differences. As our gerontologist and Senior Director of Dementia Care, Juliet develops person-centered care and programming for Brookdale’s dementia care communities. But if you ask her, Juliet says she continues to learn every day from the true experts, those living with dementia and their care partners. Juliet believes we need to move beyond the concept of caregiving, which implies a one-sided relationship, and embrace the idea of care partnering. Care partnering is about relationships built on cooperation—a two-way street promoting person-centered care and mutual feelings of purpose, where the person living with dementia also plays a strong role in shaping their care and daily routine. We are here to partner, learn and grow with our residents and families to make aging a better experience. After volunteering in nursing homes in high school, Juliet knew she wanted to work with older adults. While working on her bachelor’s degree in social work at the University of Iowa, she completed an Aging Studies Certificate program, before there were formal gerontology programs available. At Iowa, Juliet also had the chance to study with pioneers in the field of dementia care, an opportunity that shaped her passion for caring for those living with dementia. Trained as a gerontologist, with a master’s degree from the University of Northern Colorado, Juliet joined Brookdale in 2004. She is a seasoned senior living executive with more than 30 years of experience designing and executing innovative Alzheimer's and dementia care programs and living environments in both assisted living and skilled settings.

Many ethical dilemmas can arise for those providing care for people living with dementia. The very nature of dementia sometimes leads families into situations of decision-making that they have never faced before. The most common questions revolve around whether to expose a person to their diagnosis and the prognosis of their condition. Later, as the disease progresses, you may ask whether it is ever ok to deceive a person with dementia for “their own good.”

A piece in The New Yorker called “The Comforting Fictions of Dementia Care” is a must-read for anyone working with persons living with dementia. The article addresses some of today’s toughest ethical dilemmas facing dementia caregivers, both professional and family. Picture a person living with advanced stage dementia, who no longer remembers their spouse has passed away and routinely asks where he or she is. Do we risk reawakening the grief they felt at the time of their love one’s death, or do we fib a little and say that “Dad will be home after work,” which is in fact a lie?

I have never been a supporter of lying and I agree with many of the arguments in The New Yorker article against the use of deception to control or otherwise soothe the person living with dementia. There are many more suitable, and frankly more successful, ways to cope with such a scenario as I have described above. Validation is one such technique that can alleviate the ethical dilemma of the perceived need to lie or mislead a person with dementia who is upset. This technique should be well-known and practiced by all care partners. Developed by Naomi Feil, a social worker who began her work with people living with dementia decades ago, the technique involves using empathy and listening to help resolve the emotional need behind the behavior. For more information, visit Feil’s website for a list of her books and resources. At Brookdale, we understand that caring for someone with Alzheimer’s or another dementia, can place families in situations such as these and others that call for ethical choices to be made.

\As part of our ongoing Optimum Life Continuing Education series, we’re offering the session Ethics in the Care of People with Dementia. This online session is led by Daniel Kuhn, LCSW, vice president of education at All Trust Home Care, and author of more than 50 publications, including The Art of Dementia Care. Khun is also an editorial board member of The American Journal of Alzheimer’s Disease. These pre-recorded webcasts provide 1.0 CE credit (one hour) per session for nurses, social workers, case managers and nursing home administrators.

“I hope participants gain a better understanding about ways to support people living with dementia and their family caregivers,” Kuhn said. “People with dementia are often caught between wishing to be independent while facing their growing limitations. An ethical framework can clarify their dilemmas and identify options for them and their families.”

Our Ethics in the Care of People with Dementia session covers things like who should decide if an when someone lacks the capacity to make decisions, how to balance self-determination with common good and several examples of ethical dilemmas. Those who watch the course will have an opportunity to evaluate some common ethical problems and identify alternative solutions.

Those who complete the session will learn to: