The Three Pillars: What I've Learned About Living Well with Dementia

Margaret was 78 when I first met her at a memory clinic. She had just received an Alzheimer's diagnosis, and her daughter Sarah brought her to discuss what came next. What I witnessed over the following months taught me something profound about what it truly means to live well, even when facing dementia.

Margaret's family created something beautiful—not by denying her diagnosis, but by building a foundation of support, maintaining her connections to the community, and never forgetting to honor who she was as a person. Their approach became a living example of what I now refer to as the three pillars of living well with dementia.

Over my decades as a geriatrician, I've learned that an Alzheimer's diagnosis doesn't have to mean the end of a meaningful life. Yes, it changes everything. But I've witnessed countless families who've shown me that with the right approach, people with dementia can continue to experience dignity, connection, and even joy.

This June, during National Alzheimer's & Brain Awareness Month, I want to share what I've observed about the three essential pillars that support living well with dementia: being supported, being loved, and being respected. These aren't just nice ideas—they're practical foundations that make all the difference.

Pillar One: A Solid Foundation (Supported)

Living well with dementia starts with having basic needs reliably met. This means more than just medical care—it encompasses the entire support system around the person.

The caregiver is the most important person in the daily life of someone with dementia. I've said this countless times, and I believe it more each year. In early stages, this might mean periodic check-ins and help with finances or medications. As dementia progresses, the support becomes more hands-on, with assistance with personal care, ensuring safety, and managing health conditions.

However, here's what I've learned: the foundation cannot rest on the efforts of one person alone. The strongest support systems involve multiple people, including family members, friends, professional helpers, and healthcare teams who are familiar with the patient. When caregivers try to do everything themselves, they burn out, and the whole system becomes fragile.

The physical environment also matters enormously. Spaces need to be safe, supportive, and homelike. Familiar surroundings reduce confusion while providing comfort. I encourage families to bring elements of nature into daily life—whether through garden views, indoor plants, or accessible outdoor spaces.

Pillar Two: Being Part of a Community (Loved)

There's a profound difference between taking care of someone and caring for them. Taking care involves completing necessary tasks. Caring encompasses recognizing their humanity, emotional needs, and unique identity.

People with dementia remain acutely aware of how others perceive them. They can sense when they're being viewed as a task to complete rather than a person to value. As one person with early-stage Alzheimer's told me, "I may not remember everything, but I always know how you make me feel."

Dementia creates special challenges in maintaining social connections. Communication becomes difficult, leading many to withdraw to avoid embarrassment. At the same time, others often pull away, unsure how to engage with someone whose abilities are changing.

The goal is to create circles of support around the person. The innermost circle might be family coordinating regular visits. Friends form the next circle—perhaps shorter visits or activities that don't rely heavily on conversation. Professional caregivers, day programs, and community services add additional layers.

What matters most is that the person feels they belong, that they matter to others. This isn't about elaborate activities—sometimes a simple greeting by name, making eye contact, and including them in conversations makes all the difference.

Pillar Three: Having an Identity of One's Own (Respected)

Beyond being cared for and beyond being loved, a person with dementia needs to be recognized and respected for who they are. This third pillar acknowledges their inherent dignity as an individual, even as cognitive abilities change.

When someone develops dementia, decisions are often made for them rather than with them. The person may express an opinion, but it goes unacknowledged, as if their thoughts don't matter. This sends a painful message that undermines their sense of worth.

A simple change can make a big difference: regularly ask for their preferences and ensure those preferences are heard. At mild stages, ask if they prefer to have lunch with friends or stay home. At more advanced levels, offer clothing choices. Even when preferences can't always be honored, acknowledging them preserves dignity.

Daily activities should reflect identity, not just convenience. If someone always starts their day with coffee and the newspaper, they should maintain this ritual even if comprehension has decreased. If exercise is important, keep that part of the routine. These familiar patterns provide comfort and send the message: "You're still you."

Spiritual and philosophical identity remain core parts of who we are. If someone always said grace before meals, help them continue this practice. For those who found solace in nature, ensure regular access to outdoor spaces. These touchpoints often remain accessible when other aspects of cognition have changed.

The Personal Journey

Beyond these three external pillars lies a deeply personal, often spiritual journey that each person with dementia must navigate themselves. Others cannot provide this inner passage toward acceptance—it emerges from within the person's own heart and spirit.

Only the person experiencing the confusing world of dementia can truly understand it. Family and caregivers can walk alongside, offering support, but they cannot take this journey for their loved one.

What makes this journey challenging are the internal hurdles the person faces. Identity becomes less clear as memories slip away. Sources of former pride—independence, intelligence, accomplishment—may feel stripped away. When someone insists, "I don't need help," it's often the raw anguish of wounded pride, not stubbornness.

While caregivers cannot take this journey for their loved one, they can provide meaningful support by consistently conveying love, acknowledging the difficulty of this experience, creating opportunities for joy, maintaining meaningful rituals, and sharing both laughter and tears without judgment.

GOLD Approach

Older adults dread the possibility of dementia, and that's understandable. It represents common fears about losing ourselves and becoming burdens to our families. Yet my experience reveals that wellbeing remains possible, even when patients experience suffering.

This diagnosis does not inevitably lead to sorrow. Some individuals seem even more at peace after developing dementia, freed from life's usual worries and able to experience simple pleasures more fully.

The three pillars—being supported by a solid foundation, being loved as part of a community, and being respected as an individual with a distinct identity—create the external conditions for wellbeing. The inner emotional journey remains deeply personal, but for those who experience wellbeing despite dementia, there is usually a profound connection to love, both from within and from others.

You, the caregiver, play a vital role. As a companion and ally, you ensure the outer pillars remain strong, and with patience and compassion, you can walk alongside the person on their inner journey.

Margaret's story had its difficult moments, but what I remember most is how her family preserved her dignity while adapting to her changing needs. They involved her in decisions, maintained her connections to activities she'd always loved, and never stopped seeing the person behind the diagnosis.

Margaret continued to find joy in small moments—feeding birds outside her window, listening to music from her youth, and sharing meals with family. Her daughter Sarah later told me, "We didn't lose Mom all at once. We learned to love her in new ways."

That's the message I want to leave you with: love finds a way, even in the face of dementia. The three pillars provide the framework, but love—expressed through respect, patience, and presence—creates the foundation for dignity that can sustain both you and your loved one through this journey.

Warmest Aloha,

Dr. Warren Wong

PS: I say it over and over again: There's no one more important than the caregiver in the daily life of a frail person.