Does Caregiving End When a Loved One Moves Into Long-Term Care?

When people think about long-term care, they often picture long hallways, call bells, meal trays, lift chairs, and the quiet choreography of a place organized around support. National Caregivers Day invites us to include others who are just as important: the spouses, adult children, relatives, friends, and neighbours, who help preserve routine, identity, confidence, connection, and choice. If we want to improve quality of life for Veterans and Seniors, we all must stop treating these caregivers as adjacent to care and start recognizing them as a crucial part of our Community of Care.

That is true across the aging journey. Caregiving usually begins long before a move into long-term care and continues long after formal supports are in place. It often starts quietly, with rides to appointments, help managing medications, extra grocery runs, and a growing watchfulness, including virtual support as someone becomes frail, ill, or faces cognitive or mobility challenges that make daily life harder to manage. Over time, that role can become more complex, more demanding, and more emotionally charged.

Research led by Dr. Annie Robitaille through Perley Health's Centre of Excellence helps explain why this matters. The Strategies that Support Aging in Place report notes that 42 percent of Canada's Veterans are over age 65 and finds that aging well at home depends not only on clinical care, but on a broader mix of coordinated services, social connection, personal safety, and the ability to adapt as needs change. For caregivers, these are not abstract conditions. They shape whether daily life feels manageable or overwhelming, and whether the person they support can remain at home with confidence and dignity.

One of the hardest moments in caregiving is realizing that love and commitment are no longer enough to keep someone safe at home. That truth comes through in the story of Bob and Gail Christy. The couple lived together in an independent living apartment, with Bob caring for Gail, who has cerebral palsy. As her needs increased, he reached the painful point of recognizing that he could no longer manage her care on his own, and that she needed more support than he could provide. He said it was “the hardest thing he ever had to do in his life”. Her move into long-term care was not simply a practical decision. It was an emotional turning point.

Caregiving Changes Over Time

But Bob and Gail's story also illustrates a truth that is still too often overlooked: caregiving does not end when someone moves into long-term care. It changes. Caregivers remain companions, advocates, interpreters of preferences, and anchors of continuity through change. They preserve relationships, habits, and sense of self that make care personal.

That is why caregivers matter so much to quality of life. They often carry the history and day-to-day knowledge that no medical chart can fully capture such as what brings comfort, what causes distress, what routines create confidence, what helps a person feel safe. At Perley Health we engage with caregivers in many ways including the Family and Friends Council and many other committees. Our annual Family Quality of Life survey also helps us listen to family caregivers and learn from their experience. In the most recent survey, communication and engagement in care remained among the higher-scoring themes, while family priorities for quality of life on factors that shape everyday life, reinforcing that better care depends on strong relationships with the people who know our residents best.

As needs become more complex, that insight becomes more important. Frailty, dementia, cognitive change, and multiple health conditions can make it harder for a person to explain what feels wrong, what brings reassurance, or what helps them feel oriented and calm. In those moments, family caregivers often hold essential knowledge that helps care teams understand the whole person as part of a diagnosis. That is central to Perley Health's approach that's shaped around the realities of aging and increasing frailty, and which recognizes that complex needs are not only clinical, but also relational and shaped by history, habits, trust, and personal meaning.

This is also why difficult conversations matter. Caregivers are often trying to make sense of changing circumstances while also helping a loved one navigate uncertainty, risk, and decision-making. Discussions about aging, likely health outcomes, personal values, and future care can be hard for everyone involved, but they are too important to avoid. Perley Health has developed SeeMe®: Understanding frailty together as a tool to support these conversations among residents, families, and care teams. Built around collaboration, it creates space for clearer discussion about what matters most and how care should respond as needs evolve. That work now extends beyond our campus as we share SeeMe® with long-term care providers across Ontario.

Innovation through Research

Perley Health's broader research and engagement work points in the same direction. The Centre of Excellence has examined the impact of treating caregivers as “nonessential” during COVID-19 restrictions in long-term care. Other work has explored the experience of dementia dyads and the importance of connection, companionship, and belonging. The Centre of Excellence has also focused on the experiences of caregivers by bringing together residents, caregivers, researchers, and staff to develop a framework for meaningful engagement in long-term care research. Different projects, same lesson: good care depends not only on professional expertise, but on recognizing caregivers as essential partners.

That lesson matters because not every support that strengthens quality of life is funded through the healthcare system. Government funding is vital, but it doesn't cover everything needed to foster dignity, belonging, stronger engagement, innovation, and better partnership with families.

This is where the Perley Health Foundation plays an important role. Through donor support, our Foundation helps fill gaps where public funding doesn't reach, including research through the Centre of Excellence along with other initiatives that strengthen connection, dignity, belonging, and caregiver partnership. In other words, support for caregivers is not only a matter of appreciation. It's also a matter of investment.

National Caregivers Day is a chance to do more than say thank you. It's our opportunity to recognize what caregivers make possible every day for Veterans and Seniors, whether at home, in long-term care, or somewhere in between. Perley Health is working to further deepen integration with families, volunteers, and other care partners by strengthening the education, tools, and processes they need, because better Seniors' care depends on better support for the people who help sustain dignity, connection, confidence, and quality of life.

By Katrin Spencer, Vice-President Strategy and Business Development, Perley Health

If we want to improve quality of life for Veterans and Seniors, we all must stop treating these caregivers as adjacent to care and start recognizing them as a crucial part of our Community of Care.