Public discussion of dementia tends to focus on the person diagnosed, from memory loss and early detection to medication and care. Far less attention is given to the partner sitting beside them, for whom the illness is not only a medical crisis but a profound transformation of the relationship itself.
Over the years, I have worked with hundreds of families coping with dementia, and I have come to see it as more than a disease of the brain. It is also a disease of the relationship, gradually changing how partners communicate, make decisions, express love, plan for the future and share everyday life.
Dementia is also a disease of the relationship
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One of the most striking aspects of dementia is that a long-term relationship can sometimes conceal the illness. Couples who have lived together for decades develop ways of compensating for each other. One remembers names, while the other remembers dates. One handles the bills, while the other manages the couple’s social life.
When the first signs of dementia emerge, the healthier partner often begins compensating without even realizing it. They finish sentences, remind their spouse about appointments, correct mistakes and explain things to others, not as a conscious decision, but out of love and habits formed over a lifetime together.
I often meet couples who receive a diagnosis years after the disease began. In retrospect, it becomes clear that one partner had been holding together everything that the other was gradually losing. That devotion may be one of the most beautiful expressions of a long partnership, but it can also delay diagnosis and access to help.
That is why small changes matter. If you find yourself increasingly taking over tasks for your partner, answering on their behalf or hesitating to leave them alone in situations they once handled easily, it may be time to seek a professional assessment rather than dismissing the changes as “just old age.”
Grieving before the loss
Even after a diagnosis, the greatest challenge is not only medical but relational. Roles gradually shift: A person who was once an equal partner in every decision becomes someone for whom decisions are increasingly made. The healthier spouse takes responsibility for medications, finances, appointments and bureaucracy, and may eventually become the keeper of both partners’ memories. At this point, a rarely discussed process begins: grieving for the relationship before the final loss.
Partners often tell me they feel guilty for being lonely. After all, the person they love is still alive. They sit beside them, eat dinner with them and sleep in the same bed. And yet they miss them. They miss the conversations they once had, the advice they relied on, the decisions they made together and the sense of partnership built over many years. In many ways, they begin mourning their spouse long before the final goodbye.
It is important to remind caregiving partners that they also need support. Maintaining friendships, hobbies, rest and help from family is neither a luxury nor selfish. It is essential to sustain the strength required to care for a loved one over many years. Although many spouses feel guilty about going out, taking a weekend away or setting aside time for themselves, protecting their own well-being helps them remain both a loving partner and an effective caregiver.
Intimacy with a partner who has dementia
Another subject that is rarely discussed is intimacy. Dementia does not erase the need for closeness. In some cases, the opposite is true. As language becomes more limited, touch may become even more meaningful. A hug, holding hands, a gentle caress or simply sitting together can become a new way of saying, “I love you.”
At the same time, dementia can raise difficult questions about intimacy and consent. The disease may affect a person’s ability to understand a situation, communicate their wishes or give informed consent. There are no simple answers, but these concerns must be discussed openly rather than ignored. When there is doubt about a person’s capacity to understand or consent, families should seek professional guidance instead of confronting the dilemma alone.
Despite all the losses, one of the most surprising aspects of dementia is what remains. Professional literature and clinical experience both show that emotional memory can persist long after factual memory has deteriorated. People who no longer remember names or events may still respond to a familiar voice, a beloved song, a known scent or the touch of a hand.
Dr. Inbal MayanPhoto: Courtesy of Sabar HealthThat is why I encourage families to keep creating moments of closeness: sitting together in the garden, listening to familiar songs, looking through a photo album or simply holding hands. The aim is not to restore the person they once were, but to develop a new language of connection. When words begin to fade, even the smallest gestures can carry profound meaning.
Perhaps the most important lesson I have learned from couples living with dementia is not to preserve the relationship at any cost exactly as it once was, but to allow it to evolve. It may become different, more painful and at times more one-sided, yet it can still hold love, compassion and genuine closeness.
A long relationship is measured not only by the memories a couple shares, but also by the ability to remain beside a loved one as those memories fade, and to keep finding new ways to say, even without words: I am still here.
- Dr. Inbal Mayan is a specialist in geriatric medicine and medical director of Sabar Health, a hospital-at-home provider