The Weight of Care and the Lightness of Being a Care Partner

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.

brookdale associate with two residents chatting

For many years, there has been some controversy over using the term “burden” to describe the effect that caring for someone living with dementia has on the person closest to them. In fact, the phrase “caregiver burden” is now largely considered a no-no for those of us who write about dementia. In that context, “burden” has a negative connotation that becomes inevitably connected to “caregiver.” Caregiver itself is becoming a term of the past, as it reflects only a one-sided relationship.

We now frame things positively in terms of a shared life of connected people who are care partnering and learning to live together with dementia. I’ve always been a fan of changes in language to affect changes in cultural views.

But sometimes I have to wonder if, by cleansing the language, we have forfeited some of the important focus on the very real toll and weight that the disease of dementia can place on a family/friend system. That weight is heavy; a pervasive, dense thing that seeps in and interferes with the once normal ways of connecting, conversing and communing.

Brian LeBlanc likes to call it a “fog,” and I recommend his YouTube video for a better understanding. To ignore the frustration that comes with trying to navigate through that fog is to discount the hard work and adjustments that need to be made by both the person living with the disease, and those who love them.

The role of a care partner is hard, especially if one is truly trying to partner. It can be difficult, time-consuming and stressful and yet many do not think of it as a burden. There is almost a spiritual sense to this vital duty. For many, it is perhaps the most sacred gift we can give to another human.

A dear friend of mine had help from hospice to care for his mother at home during her last few weeks of life. Although they were some of the toughest days of his life, my guess would be that he would not trade the experience for anything in the world. He cherished the closeness that the work on her behalf brought to him and was proud of the comfort and care he provided for her. Some of the most beautiful testaments you can read are the words of gratitude that persons living with dementia share about their trusted care partners.

We must find some way to acknowledge the very real wear and tear that can come along with the work of care partnering, without always casting it as a burden. So I wonder, is there a new term that we could use that speaks to the weight and also to the lightness?