Caring for someone with dementia: Sebastian’s story

Every few minutes, someone in Australia is diagnosed with dementia. It’s one of the country’s leading causes of disability, and while many people associate it with ageing, it can also affect those much younger. Behind every diagnosis is not just one life changed, but often two: the person living with dementia, and the person caring for them.

For carer and dementia advocate Sebastian Caruso, caring for someone with dementia began when his partner, Jeff, was diagnosed with a rare younger-onset form of the condition. Their relationship shifted in ways he could never have imagined.

“Caring for someone with dementia can mean wearing many different hats. Sometimes you’re the advocate, the partner, the organiser or even the medical expert. But a lot of times, you’re all of them at once,” said Sebastian.

At first, it was confusion and denial. Jeff looked healthy, and friends found it hard to believe anything was wrong. But as his symptoms deepened, the small changes like misplaced items, repeated stories, sudden frustration became part of everyday life. What followed was a journey filled with bias, misunderstanding, and lessons in resilience.

Caring for someone with dementia often means becoming an entire care team rolled into one. For Sebastian, that meant managing medications, attending medical appointments, and learning to navigate a complex health system that wasn’t always kind or inclusive.

As a same-sex partner, he often found himself mistaken for Jeff’s “father” or “friend.” Clinicians, though well-meaning, sometimes lacked awareness about dementia or the realities of diverse carers. Others treated their relationship as invisible.

“Sometimes clinical care felt transactional,” he recalled. “You want them to see your journey, not just prescribe and move on.”

Despite the challenges, Sebastian remained focused on what mattered most: Jeff’s dignity, joy, and sense of self. They surrounded themselves with layers of support–neurologists, GPs, physiotherapists, occupational and speech therapists, even a music therapist who helped lift Jeff’s spirits. Their dog, too, played an important role in keeping a sense of routine and comfort at home.

One of the hardest parts of caring for someone with dementia is isolation. Friends pull away, unsure what to say. The outside world moves on. But Sebastian made it his mission to stay connected.

When Jeff was first diagnosed, he emailed friends with a brochure and a Four Corners documentary about dementia. “Read this, watch this,” he told them. “Then ask me questions, because I’m learning too.” Education, he believed, was a form of advocacy.

Through community programs, counselling, and dementia-specific support groups, Sebastian found a new circle of understanding. These spaces reminded him he wasn’t alone, and that asking for help wasn’t a weakness, but an act of love.

“You can’t do it alone, and you don’t have to do it all alone,” he said.

As Jeff’s condition progressed, conversations about end-of-life care became part of their reality. Together, they prepared wills, guardianship papers, and advanced care directives. They also engaged an end-of-life doula—someone who could help them navigate the emotional and practical transitions ahead.

“End of life is just as important as the beginning of life,” Sebastian reflected.

When Jeff passed, the house felt painfully quiet. The constant vigilance, the routines, the appointments, all suddenly gone. Like many who spend years caring for someone with dementia, Sebastian faced not only grief but a loss of identity. Who was he, now that the caring stopped?

Support from his workplace helped. Flexible hours, compassionate check-ins, and time off to process his loss made a world of difference. Slowly, he began to bounce back.

Through their journey, Sebastian learned that caring for someone with dementia isn’t just about managing symptoms. It’s about preserving humanity, theirs and yours.

It means standing up to bias, educating others, and speaking up for better care. It means choosing patience when frustration tempts you, humour when days feel heavy, and grace when love hurts most.

“Everybody’s experience is different with dementia,” Sebastian said. “No two people will have the same journey. You just do your best, and you keep showing up.”

His story is a reminder that caring for someone with dementia is both deeply personal and profoundly universal. It’s a journey of love stretched to its limits, and of learning that real strength often looks quiet a hand held, a routine kept, a conversation repeated one more time.

At Leora Healthcare, we understand that caring for someone with dementia can be both rewarding and exhausting. Our dedicated team of support workers are trained to provide compassionate, person-centred care for people living with dementia, whether through daily assistance, meaningful companionship or guidance for families navigating the journey.

Because no one should have to do it alone. And with the right support, caring for someone with dementia can also be a journey of connection, dignity and hope. 💜