Love, Connection & Dignity: Understanding Relationships in Dementia

Justice Sandra Day O'Connor faced an impossible choice when her husband, John, living with Alzheimer's, developed a close relationship with another resident in his care facility. They held hands daily and spent time together. Their son described his father as being "like a teenager in love." Sandra's response was remarkable: she was "thrilled that Dad was relaxed and happy."

Most families would be shocked to discover their spouse or parent holding hands with someone new. The immediate reaction might be to intervene, explain, and stop it. But here's the dilemma: there's genuine happiness in this connection. Sometimes love means accepting that the person we care about has found comfort and joy, even if it looks different from what we expected.

As we observe August, I want to address one of the most complex and often unspoken aspects of dementia care: how the fundamental human need for love, connection, and intimacy continues even as cognitive abilities change.

The Human Need for Love Continues

The human need for love and connection doesn't disappear with a dementia diagnosis—it often becomes even more essential for emotional well-being and quality of life.

While dementia changes how love is expressed and experienced, it doesn't eliminate the deep human longing for companionship, touch, and emotional bonds. Research consistently shows that loneliness accelerates cognitive decline, while social connections can reduce agitation and improve mood.

Physical affection—whether holding hands, hugging, or simply sitting close to someone—provides comfort and security that transcends memory loss. When someone with dementia finds a person who connects with them and makes them feel safe, it's natural that they would want to maintain that relationship.

These connections aren't frivolous. They're often lifelines that help navigate the confusion and fear that dementia can bring. The challenge for families comes when these needs manifest in unexpected ways: when a spouse of forty years seems like a friendly stranger, or when someone develops strong feelings for a new person who provides comfort and understanding.

Understanding this reality helps us ask better questions: Is it more important that they continue to love us the way they always did, or that we continue to love them for who they are now?

The Strain on Marriage and Partnership

Marriage and long-term partnerships face profound changes when dementia enters the picture. What was once a mutual relationship often transforms into something entirely different, with one partner becoming the primary caregiver while the other becomes increasingly dependent.

These changes affect every aspect of connection: emotional, physical, and intimate. The patterns that made the relationship work before may no longer exist. Some couples navigate these transitions well, but many find their relationship fundamentally tested.

The caregiving spouse often experiences complex emotions: caring deeply for someone while feeling no physical desire, or even discomfort with physical closeness. This isn't from lack of love. It's from the difficulty of caring for someone who is increasingly ill and disabled. Sexual interactions can become particularly challenging when what was once mutual and shared now feels uncomfortable and one-sided.

Research shows us that the only way to hold onto love is to grieve and let go of the relationship that once was. Love in dementia often becomes reshaped as tenderness, patience, empathy, and providing care.

Every relationship has three parts: the person with dementia, the partner, and the "us" created together. Dementia changes all three. Meeting all needs is impossible. Finding balance and doing your best is more than enough.

"Does It Still Count as Love?"

"Does it still count as love when it feels so different?" This question haunts many spouses caring for partners with dementia.

The answer isn't simple, but it's important: love in dementia looks different because the relationship itself has fundamentally changed. What we're experiencing isn't the death of love. It's love being transformed by circumstances neither partner chose.

Every relationship has established patterns: who makes decisions, handles responsibilities, how connection happens daily. Dementia disrupts these patterns completely, regardless of what they looked like before. The spouse without dementia may find themselves falling out of love as the person they married seems to disappear. Conversely, a person with dementia might fall out of love with their spouse and become attracted to someone new.

These changes create profound guilt. We're taught that real love endures everything, but dementia challenges this notion. Sometimes the most loving thing is acknowledging that needs have changed, both yours and theirs.

New Relationships and Their Gifts

People with mild cognitive impairment often develop new relationships, and these connections can provide genuine benefits for everyone involved. These relationships frequently emerge from practical needs but often evolve into meaningful companionship.

The attraction is often mutual. New friends may not be frustrated by repetition or memory lapses. They accept the person as they are now, without knowledge of their "before" self. Sometimes these friends have their own health challenges or disabilities, creating bonds based on shared understanding.

In care settings, relationships form naturally through proximity and shared experiences. People dealing with similar challenges find comfort in each other's company. There's an understanding that doesn't require explanation. Someone who also struggles with words or gets confused provides camaraderie.

What makes these relationships work is that they're often based on acceptance and enhancement of what exists rather than suffering over what's been lost. The person with dementia finds someone who doesn't see them as diminished, while the friend may find purpose in providing understanding and patience.

These connections can be extraordinary gifts, providing joy, engagement, and emotional support. Staff in care facilities often observe how two residents seek each other out, sit together at meals, or seem calmer in each other's presence.

When Protection Is Needed

Not all new relationships that develop around dementia are healthy. While many bring genuine companionship and joy, some can become harmful, even when they start with good intentions.

The vulnerability created by dementia can attract those who see an opportunity to feel important or needed. What begins as a caring friendship sometimes shifts into emotional exploitation when someone positions themselves as uniquely understanding while subtly undermining other relationships.

Warning signs include comments like "Your family doesn't understand you like I do" or "I'm the only one who really appreciates you." The person may discourage family visits, schedule activities during family time, or encourage secrecy about their relationship.

Families often sense something is wrong before they can articulate it. The person with dementia seems distant from family while growing closer to someone else, becoming defensive when the relationship is discussed.

Sexual exploitation, while less common, also occurs. Predators take advantage of confusion, reduced ability to recognize inappropriate behavior, and difficulty reporting clearly.

Protecting someone who can't protect themselves requires courage to speak up, even when concerns seem unwelcome.

Physical Expressions of Affection

Physical expressions of affection in dementia can be surprising and sometimes misunderstood. A person may reach for someone's hand, touch another's body, or give unexpected kisses. Understanding the difference between innocent behavior and genuine sexual interest is crucial for an appropriate response.

Sometimes behaviors appear inappropriate but aren't sexually motivated. Dementia removes the social filter that tells us when to do certain things privately. Someone might touch their private parts because they need the bathroom but can't express this clearly, or remove clothing for comfort.

In other situations, people with dementia do have a genuine desire for physical contact with specific individuals. This goes beyond needing touch. They become attracted to particular people and want closeness with them. These feelings can resemble pure, uncomplicated affection and are often authentic expressions of human connection.

Many families find these connections precious. Seeing their loved one experience joy and affection can be a gift. The desire to hold hands or be in close proximity is natural and human.

Sometimes the desire moves beyond simple affection. In milder stages of dementia, there may be a real desire for sexual contact. This creates complex situations requiring careful consideration of safety, happiness, emotional needs, and personal values.

The key is recognizing that feelings and attractions in dementia are often genuine human emotions deserving of respect, even when they create challenging situations for families.

The GOLD Approach

The GOLD approach guides us through the complex terrain of relationships in dementia: we protect when protection is needed and celebrate when connection brings happiness.

Love in dementia can look dramatically different from what it once did. Justice Sandra Day O'Connor understood this when she celebrated her husband's newfound happiness with another resident. She chose joy over convention, understanding over judgment.

These situations require us to ask difficult questions: What serves the person's emotional well-being? What honors their dignity? What brings them comfort and connection in a world that often feels confusing and frightening?

There isn't always a clear "what to do" because people, with all their complexity, are involved. Cultural and religious beliefs about marriage vary widely. Family members bring different values about commitment, loyalty, and love. Each situation requires individual consideration.

What remains constant is our commitment to treating every person with dementia as a complete human being with ongoing needs for love, respect, and connection. Their cognitive changes don't diminish their fundamental humanity or their right to experience joy and affection.

Sometimes the most loving thing we can do is step back from our own expectations and honor what brings peace and happiness to the person we care about. That's healthcare worth celebrating, and it's a freedom worth protecting.

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.