Bring Dementia Out of the Shadows of Stigma

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.

A gentleman approached me while I was manning a dementia information booth at one of our communities. I will call him “John”, although it is not his real name. He told me he resided in independent living and we chatted about this and that. Then he suddenly said, “My doctor tells me I have a smidge of Alzheimer’s.”

John was in great shape and very articulate about his situation. Indeed, it was one of the few times in my over 25 years of working with this disease that I have encountered anyone who was so aware of his own diagnosis. But as we talked for the next hour about the disease, his apprehensions and his fear of becoming incapacitated, it was clear he was scared. He was also angry, saying, “My physician just told me one minute and the next minute I was in my car driving home.” He couldn’t understand how this bombshell could have been dropped in his lap without any accompanying information or recommendations on what to do next.

I was angry on his behalf, but also frankly surprised that he had even been given his diagnosis at all. The Alzheimer’s Association last year published a fact that stunned many: Fewer than 50 percent of all people diagnosed with the disease were actually told by the doctors. Meantime, at least 90 percent of people with cancer of various types are informed of their diagnosis.

There are many theories about why physicians avoid telling their patients about an Alzheimer’s diagnosis. Some say it’s a lack of training; others blame a medical system forcing quick visits that don’t allow enough time to counsel patients. However, most of us working in this field believe it comes from the stigma of Alzheimer’s as robbing people of their competence, even of their personhood.

In fact, John told me that during that appointment, he sensed the diagnosis had instantly changed how the physician perceived him. The doctor seemed to think John was no longer capable of understanding his own medical information. John felt the message was clear; there was no expectation of “life” after the diagnosis—or if there was, the physician couldn’t find the words to speak about it.

June is Alzheimer’s and Brain Awareness Month. John’s situation makes it clear that we must bring dementia out of the shadows of stigma. As a society and as individuals — and this includes physicians — we must start talking openly about the disease. People diagnosed with dementia need information and answers so they can plan and make decisions while they are still able to do so, including about how they wish to live in the future. When they are denied this conversation, it is not the disease that robs them of their rights — it is us.