Person-centered care is not sympathy. It is support, partnership, and making room for life.
“She loves baking, but she has dementia.”
It is a familiar kind of sentence, often spoken with concern. Yet the word “but” can quietly close a door. A person’s interest is acknowledged, then the diagnosis becomes the reason to set it aside.
What happens when we change the sentence?
“She loves baking, AND she is living with dementia. How can we support her in enjoying it?”
This is the heart of person-centered care. It is not sympathy from the sidelines or doing everything for someone. It is coming alongside the person, understanding what matters to them, and working together so they can keep choosing, contributing, connecting, and living.
Person-centered care goes beyond being kind or learning someone’s favorite song. It means allowing the person’s values, preferences, abilities, relationships, and present experience to shape how support is provided.
The Centers for Medicare & Medicaid Services (CMS) puts this approach into practice through its Guiding an Improved Dementia Experience (GUIDE) Model. GUIDE calls for a person-centered care plan built around the individual’s goals, strengths, and needs, while also providing education, support, and respite services for caregivers. Its goals include improving quality of life for people living with dementia and reducing strain on their caregivers. [1]
That requires curiosity and partnership. Who is this person today? What are they communicating through words, expressions, movement, or silence? What do they want to do for themselves? Where would the right support make participation possible?
Sympathy can unintentionally cast someone as a passive recipient of care. Support recognizes a person with a voice, capabilities, relationships, and a life still being lived. It does not ignore the challenges of dementia. It responds to them without allowing them to become the person’s entire identity.
A life story can open a conversation; it should not become a script someone must keep following. A former gardener may enjoy plants today, or may prefer music, company, or rest. Seeing the person means paying attention to present wishes as well as personal history.
“This AND” is a practical way to hold two truths together: dementia creates real support needs, AND the person’s humanity, preferences, strengths, and right to participate remain.
Consider these everyday shifts:
The change is more than vocabulary. It asks us to adapt the support before we remove the opportunity. Sometimes that means simplifying a task, changing the environment, slowing the pace, or trying again later. The goal is not to make someone perform. It is to create the conditions for autonomy, contribution, and connection.
Care partners need support, too. Working together becomes more possible when family and professional caregivers have practical education, time to observe, permission to be flexible, and people with whom they can share what is working. Empowering the person living with dementia and equipping the caregiver are not competing priorities; they strengthen one another.
The Eden Alternative makes this broader view of care central to its framework. Its Ten Principles address loneliness, helplessness, and boredom and emphasize companionship, meaningful contribution, and involvement in decisions. Its seventh principle places medical treatment in service of a life worth living. [2]
The framework identifies seven Domains of Well-Being: identity, connectedness, security, autonomy, meaning, growth, and joy. Together, they expand the question from whether care tasks were completed to how life is being experienced. [2]
This makes The Eden Alternative a useful foundation for the “This AND” mindset. A person may need assistance AND opportunities to give. They may need protection AND a voice in decisions. Their abilities may change AND their life can include learning, laughter, discovery, and belonging.
For someone who enjoys gardening, that might mean choosing a plant, watering with assistance, arranging cut flowers, or simply sitting outdoors with a companion. The goal is an experience the person values. Purpose can be modest and personal; dignity never depends on productivity.
The closing message in Dementia Live features Laurie Scherrer, an advocate and a person living well with dementia. Her perspective brings the purpose of person-centered care into focus: “Dementia does not define who I am.” [3]
Laurie describes herself not by a diagnosis but through the many parts of her life—her relationships, interests, experiences, and contributions. That is not a denial of dementia. It is a reminder that a diagnosis is one part of a whole person.
The emphasis belongs on LIVING. Quality of life is not an optional extra to consider after every risk has been eliminated and every task completed. It is part of good care. It can be found in having a say, being useful, maintaining relationships, pursuing interests, and discovering new ways to do what matters.
This also changes the caregiver’s role. The aim is not to take over at the first sign of difficulty. It is to notice what is changing, ask what support would help, and come alongside with the least assistance necessary. On some days, support may be a cue or an offered hand. On others, it may be more direct help. Partnership remains the goal.
Knowing that we should adapt care is one thing. Recognizing why our usual approach may feel confusing, overwhelming, or frustrating is another.
Dementia Live is AGE-u-cate’s experiential education program, designed to build understanding and empathy through an immersive experience involving simulated sensory and cognitive challenges. Certified Coaches facilitate the program for staff, families, students, and community participants. [4]
No simulation can fully reproduce another person’s experience of dementia. Its value is as an invitation to greater curiosity, followed by listening to the individual and adapting support.
For example, a participant who finds instructions difficult to follow during an experience might reflect on how quickly they usually speak. Someone who feels overwhelmed might reconsider the noise, competing demands, or pace of a care interaction.
The “AND” is the next step: “I recognize that processing instructions may be difficult, AND I can slow down, offer one step at a time, and support the person’s participation.”
Empathy is a starting point. Support is what we do with it: explain before assisting, wait for a response, notice discomfort, offer usable choices, and adjust without taking away the person’s voice. The experience opens the door; ongoing practice turns greater understanding into partnership.
Research supports investing in person-centered approaches. In the WHELD randomized trial involving 69 UK nursing homes, a program combining person-centered staff training, tailored social interaction, and education about antipsychotic review produced modest improvements in quality of life and agitation over nine months compared with usual care. The study evaluated WHELD and illustrates the value of combining education with changes in everyday care. [5]
For care teams and families, the practical question after education is: what will change in the next interaction?
Choose one routine. Ask the person what matters in a way they can respond to. Adjust the pace or environment. Preserve an opportunity for choice or contribution. Observe the response, share what helps, and keep adapting together.
Leaders also have a role: making room for staff to know people, partner with families, share observations, and respond flexibly. “This AND” needs to show up in daily routines and decisions, not only in training.
For more on making these approaches consistent across an organization, read Person-Centered Dementia Care in Practice.
Person-centered care acknowledges the realities of dementia AND refuses to let those realities become the whole story.
It is not about feeling sorry for someone. It is about seeing them, listening to them, and supporting them to live as fully as possible. It is about equipping caregivers to move from doing for to working with. And it is about creating more moments of identity, choice, purpose, connection, growth, and joy.
“This AND” asks a question worth carrying into every interaction: What is this person experiencing, AND how can we work together so life remains theirs to live?
Explore Dementia Live to help your team, family caregivers, and community turn greater understanding into practical support, shared participation, and a better quality of life. [4]
2. The Eden Alternative. Our Framework. Ten Principles and Domains of Well-Being.
3. Scherrer, L. Dementia Does Not Define Me. Dementia Action Alliance.
4. AGE-u-cate Training Institute. Dementia Live. Official program description.