Grief for families in the aged care system begins long before the death of their loved ones, new research has found, highlighting the need for a systemic rethink of how grief is understood and supported.
Led by Dr Priyanka Vandersman from Flinders University's Research Centre for Palliative Care, Death and Dying (RePaDD), the study explored the experiences of family caregivers and staff across nine residential aged care facilities in South Australia.
"The grieving process began very early for most families, generally at the time their loved one entered into the aged care facility," says Dr Vandersman, a registered nurse and Senior Research Fellow at Flinders' College of Nursing and Health Sciences.
"We found the grief wasn't in anticipation of potential death, but from losing their person into the system and having their identity as their carer, protector and advocate taken away. That loss of identity is profound.
"As more people enter into the aged care system, we need better understanding of how the full journey of grief unfolds so we can offer appropriate supports throughout."
Involving interviews and focus groups, the study found grief was a long process not tied to a singular event, but one that evolved from a transition period as the loved one entered aged care, through to their decline and into and beyond bereavement.
Five key themes emerged: early grief linked to the loss of caregiving role; emotional strain during transition; the impact of communication on end-of-life experiences; the importance of after-death rituals; and the sustaining power of relational support.
Researchers say the findings challenge traditional models of bereavement support, which often focus only on the period after death.
"We need to shift our thinking on how we support grief in the aged care sector," says Dr Vandersman. "It's a continuous process and shaped by everyone involved in the system. Families, staff, and wider communities all experience or play a part in the grieving process."
The study also found that communication plays a pivotal role in shaping how families process grief. Families who received timely, honest updates about their loved one's condition felt more supported and better prepared for end-of-life. Conversely, delayed or unclear communication left families feeling unprepared and distressed.
"One daughter shared how she didn't realise her father was dying until the aged care manager sat her down and explained it gently but clearly," says Dr Vandersman. "That conversation, though painful, helped her begin to process what lay ahead. It's a reminder that communication isn't just about information, it's care."
Once the resident did pass away, after-death rituals were also found to be deeply meaningful. Families described how small acts, such as staff forming a guard of honour or participating in funeral services, helped them feel their loved one's life was honoured.
"These rituals offer more than closure; they validate the emotional journey of families and staff alike," says Dr Vandersman.
"And they don't just mark the end of the resident's life; they give families something to hold onto in their grief. They reinforce that the resident mattered, and that their passing touched a community."
The authors call for grief support to be embedded into aged care systems through the care journey, not just at the end. This would include recognising the emotional toll of caregiving transitions, fostering ongoing family involvement, and ensuring culturally sensitive, personalised care.
"It is clear that timely end-of-life planning, support, post-death rituals, and ongoing ties with the care facility can help family caregivers cope with grief," says coauthor, Professor Jennifer Tieman, Director of the Research Centre for Palliative Care, Death and Dying.
The authors note that by building a strong partnership between residential aged care staff and family caregivers, encouraging open conversations about death, and providing culturally responsive support during and after a residents' death, we can alleviate and assist caregivers' grief and loss.
"Ultimately, if we want to support families well, we need to see grief as part of the whole aged care experience," says Professor Tieman.
The paper, '"I thought he had longer than that": Family caregivers' experiences of grief, loss, and bereavement in residential aged care' by Priyanka Vandersman, Amal Chakraborty, Georgia Rowley and Jennifer Tieman is published in the journal BMC Palliative Care. DOI: 10.1186/s12904-025-01929-6. The research was funded by the South Australian Department of Health and Wellbeing.
