Surviving Caregiving

The D Factor: How Respect for Dignity Can Make Care Better

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Dignity is one of those things we don't think much about until it’s gone.

In the hospital, for instance: Ever hear the saying about hospitalizations, "Check your dignity at the door"? It refers to those gowns that barely cover your tush. The abrupt 3 a.m. wakeups to take vital signs. Strangers' group discussions of your most intimate bodily functions.

Being able to hang onto your sense of dignity directly affects quality of life, researchers say. And this is especially true in care settings of all types, including at home.

What is dignity, anyway?

Dignity is defined in different ways. Mainly, it refers to the state or quality of being worthy of honor and respect.

"Dignity is a basic human right," says Qiaohong Guo, a PhD candidate at the University of Massachusetts-Amherst, who opened a panel of experts discussing dignity at the Geronological Society of America's recent annual meeting. "You have dignity by virtue of being human." (This is sometimes called "intrinsic dignity.")

In terms of care, researchers focus on what's called "attributed dignity." This measure, developed by Cynthia Jacelon, PhD, RN, refers to how much value people perceive that they have and how much respect and worth they feel that others show them. Dignity is deeper than self esteem or feeling good about yourself; it's self value, she says, valuing yourself and feeling valued by others.

"Dignity is like the air — as long as it's good quality and available, you don't notice it. It's only when there's not enough air or a bad smell in the air that you notice it and it becomes important," Jacelon explains.

How dignity affects care

Over the past decade or so, there's been growing interest in the role of dignity in care settings, Jacelon says. Of special interest to researchers: Dignity in health care, in end-of-life care, and in the care of people with impaired mental capacity, such as Alzheimer's or coma.

Her research has shown that some kinds of function are improved when people feel they are being treated respectfully and in ways that maintain their dignity. "It's a powerful idea," she says.

People who feel disrespected can react in a variety of ways that makes care more difficult. They may become depressed or anxious,or respond with aggression or resistance.

A 2013 study in Nursing Ethics defined one of the foundations of dignity-preserving dementia care as "advocating the person's autonomy and integrity." This means having compassion for the person, confirming his or her worthiness and sense of self, and creating a "humane and purposeful environment."

At the end of life, people deserve to have a peaceful environment, relief from symptoms, dignified treatment and care, privacy, and autonomy, among other factors, says Guo, who is studying how family caregivers maintain dignity during the dying process. The Five Wishes living will program is one of many efforts to encourage advance conversations about one's preferences for these aspects of care, among others.

What "dignified care" looks like

"Dignified care," Guo says, "is care that respects, maintains, promotes, and recovers a patient's dignity."

For you as a caregiver, this might mean the following:

  • Provide privacy. Everyone needs their own time and space, whether for being alone with one's thoughts or toileting. Although people are especially vulnerable to a loss of dignity during personal care, caregivers' careful responses can instead promote dignity reported Lesley Baillie, PhD, Florence Nightingale Foundation chair of clinical practice at London South Bank University, in a 2007 study done on nursing in hospital settings. When help is needed for personal needs, look for ways to give it respectfully, such as using a towel to cover private parts during bathing of someone who's distressed. Knock before entering a room.

  • Respond promptly to basic needs. A classic example, says Jacelon, is the person who needs assistance to use the bathroom, but is left to wait until he or she becomes incontinent.

  • Offer choices. Aging can bring necessary losses (driving, sports, cooking up a storm). But people deserve to have a say over the elements in life they can still control. Try not to dictate what's for lunch, what to do today, what to wear. Even people with Alzheimer's feel validated by being given simple choices, if you can see this isn't stress-making. Another way to do this is to involve a person who's capable in medical decision-making, by keeping him or her in the information loop. Ask, "What do you think?"

  • Listen. Being heard, really heard, is key to feeling respected.

  • Reassure. In Baillie's study, people of all ages and genders counted reassurance and friendliness as interactions that promoted dignity.

  • Don't rush. Words and feelings can take a long time for some people to express. One patient told Jacelon that her caregiver was always repeating her questions if she didn't get an answer right away."I'm not stupid, I just need more time to get my thoughts together," she explained.

  • Keep up basic courtesy. Say "good morning!" Make eye contact. Use please and thank you." No baby talk! Just because someone is old or dependent doesn't mean they're less deserving of common courtesies.

  • Look for the good and praise it, reinforce it. Think about the things the person still can do. Reframe negatives that you see as positives. Yes, Dad wanders, but at least he can still walk. Your wife complains more than she used to, but she still knits a beautiful afghan. Find activities that are truly engaging, yet not frustrating.

"Dignified care," Guo said, "becomes important to maintaining dignity." Remember, though the body and brain may change, but the essence of the person is still there inside.

Paula Spencer Scott is a Met Life Foundation Journalists in Aging fellow, a program of the Gerontological Society of America and New America Media.