How Caregivers Can Preserve Dignity

Here are some of the most common areas where care recipients struggle with the loss of independence, according to Kriseman:

• Loss of autonomy. Difficulty making decisions about daily activities, finances or medical care can leave individuals feeling powerless.​
• Personal care challenges. Assistance with bathing, dressing, toileting or feeding can feel invasive and embarrassing. Caregivers may inadvertently rush or demean the person during these routines, compromising dignity.
• Communication barriers. Cognitive decline or speech difficulties can make it hard for individuals to express needs or preferences. Ignoring or talking over the person, rather than listening patiently, diminishes their sense of worth.​
• Social isolation. Withdrawal from friends, family or community activities can lead to loneliness and feelings of being a burden. Environments like nursing homes sometimes fail to provide meaningful social engagement.
• Stigma and stereotyping. Society often equates cognitive or physical decline with incompetence or lesser value. Negative attitudes from staff, peers or even family members can erode self-esteem.​
• Loss of identity and role. Chronic disease may prevent someone from pursuing hobbies, work or social roles that previously defined them. Feeling like “just a patient” rather than a whole person can undermine dignity.
• Medical decision-making and autonomy. Individuals may feel powerless in health care settings when treatments are imposed without discussion or informed consent. Failure to respect advance directives or personal preferences can be deeply demeaning.​
• Physical discomfort and pain. Unmanaged pain or discomfort can make people feel helpless and stripped of control over their bodies. Care that prioritizes efficiency over comfort can inadvertently humiliate or distress a person.​
• Privacy issues. Inadequate attention to privacy during medical exams, personal hygiene or toileting can feel degrading.​
• Caregiver attitudes and stress. Caregiver burnout or frustration may result in a harsh tone, impatience or neglect, all of which harm dignity.

Achieving balance without taking over​

Jack George, 69, and his wife, Susan, 62, have navigated the complex and often isolating world of dementia with resilience and advocacy. Jack, diagnosed with frontotemporal dementia (FTD) in 2020, after being diagnosed with mild cognitive impairment in 2016, retired early from his job overseeing manufacturing operations. He cited concerns about his ability to ensure workplace safety as his cognitive challenges progressed.

The diagnosis reshaped their daily lives. “When we got Jack’s diagnosis, I promised two things: I’d be with him until the end, and I’d keep his voice safe, meaning that I would help him make sure he’s heard in our home and our community,” Susan says. Jack voluntarily gave up driving when his spatial awareness and focus became impaired. Susan, meanwhile, continued working in medical billing, adapting her professional skills to support their household and her husband’s needs.

The Georges have made advocacy a central part of their lives. Jack is involved with the Dementia Action Alliance and the The Association for Frontotemporal Degeneration, lobbying for awareness, educational resources and official recognition of FTD. Their efforts have led to city, county and state proclamations recognizing FTD Awareness Week, and Jack has spoken publicly to raise understanding of the disease, emphasizing that dementia encompasses a wide range of conditions beyond Alzheimer’s.

Susan has played a crucial role in maintaining Jack’s dignity and autonomy. She balances caregiving with supporting his independence, using practical strategies like automatic reminders and structured routines to mitigate the behavioral and cognitive challenges of FTD. Together, they advocate for research participation and brain donation; Jack is part of a long-term study collecting cognitive and behavioral data. “I’ve learned that supporting Jack’s advocacy means stepping back sometimes, letting him make choices, even small ones about what to do or what to say.”

Defining the future on their terms

​True dignity care means recognizing that each person has unique preferences, routines and sources of joy, even as cognitive or physical abilities decline. It’s not enough to follow generic protocols or assume what works for residents or care recipients. Instead, caregivers must learn the individual’s likes, dislikes and personal history to create experiences that reinforce identity and quality of life, Kriseman explains.

“Many caregivers and facilities assume that people with dementia don’t really know what’s going on, leading them to treat residents like children or make one-size-fits-all decisions,” Kriseman says. She recalls visiting her mother at mealtime and finding staff had replaced her favorite mashed potatoes with tater tots — believing it was more “dignified” and less messy. “She would have loved to eat those mashed potatoes, even with her fingers,” she says. “That would have brought her joy, and that’s what true dignity looks like.”

Experts and experienced caregivers share five concrete strategies for putting dignity into action:

1. Recognize the person, not the disease. For Susanne White, author of Self-Care for Caregivers, dignity begins with perspective. “You have to see the person, not the disease,” she says. Too often, caregivers focus on what their loved one has lost — memory, mobility, independence — rather than what remains. White learned to meet her mother “in the present moment,” setting aside old family dynamics and seeing her not as a patient but as a whole person still capable of humor, insight and connection. This mindset change, she explains, made her a more compassionate caregiver and helped her shift from burnout to balance.

2. Support autonomy and choices. A former special education teacher, Susan George uses her professional instincts to protect Jack’s independence — letting him choose what to wear, even if it’s slippers to Walmart, and involving him in every decision about his care. Those choices — what to wear, what to eat, whether to sit inside or on the porch — may seem minor, but to George the decisions affirm that her husband is still the author of his own life, not merely the subject of care. That philosophy extends to bigger issues, too. George involves her husband in discussions about his medical appointments. “He needs to have input,” she says. “It’s his life, not mine.”

3. Avoid correcting or arguing. One of White’s golden rules is to try not to correct a loved one in public — or even in private. “They might not grasp every word, but they know when they’re being scolded,” she says. Arguing or insisting on accuracy often does more harm than good. Instead, she advises caregivers to reframe gently, respond with kindness and let small inaccuracies go. “Correcting does nothing for us,” says White, creator of the Caregiver Warrior community. “It only chips away at their confidence.” Her goal was always to preserve her mother’s dignity, not her own need to be right.

4. Adopt respectful language around incontinence. Clinical educator Michele Mongillo, author of Caring with Dignity, emphasizes that language shapes how a person feels about themselves and their care. Referring to incontinence products as “diapers” infantilizes adults, implying they are childlike and incapable, which can be deeply humiliating. Instead, she advocates using terms like “adult briefs” or “protective underwear,” which acknowledge the person’s adulthood and dignity. “This distinction may seem small, but it signals respect, reinforces independence and helps the care recipient to maintain a sense of self-worth,” she says.

5. Honor their identity. White believes that maintaining small rituals tied to her mother’s identity — doing her hair, painting her nails, playing her favorite blues records — was another way of saying, “I see you.” Her mother had always taken pride in her appearance, and those moments became bonding rituals rather than chores. “It wasn’t about vanity,” she says. “It was about honoring who she had always been.” For White, these gestures transformed daily caregiving into joyful moments, rather than a daily job.​