Navigating grief in the aged care system: why support must start long before end-of-life

Grief in aged care doesn’t begin at the bedside in someone’s final days. According to new research from Flinders University, it often starts the moment a loved one enters residential care – long before death is imminent – and continues to evolve throughout the entire care journey.

The study, led by Dr Priyanka Vandersman from the Research Centre for Palliative Care, Death and Dying (RePaDD), challenges long-held assumptions about bereavement. Rather than grief being a discrete event tied to death, families described it as a prolonged, shifting experience shaped by loss of role, communication with staff, and the culture of care within facilities.

Early grief starts with the loss of role and identity

For many family caregivers, the deepest shock wasn’t anticipatory grief about future death – it was the sudden loss of their identity as the primary carer and advocate.

“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,” Dr Vandersman says. “That loss of identity is profound.”

This transition into residential care brought an emotional strain that often went unrecognised. Families described feeling sidelined or unsure of their place, even while still deeply involved in their loved one’s life.

Grief evolves across the entire aged care journey

Through interviews and focus groups with families and staff across nine South Australian aged care facilities, researchers identified grief as a long arc shaped by:

• the early loss of the caregiving role

• the emotional weight of transition

• communication around health changes and end-of-life

• meaningful after-death rituals

• relationships with staff and other residents

  
  

Instead of a single moment, grief unfolded from entry into care, through decline, and into bereavement – highlighting why support must be continuous, not reactive.

Communication can soften or compound emotional distress

One of the clearest findings was the central role of communication. Families who received timely, honest updates about health changes were more able to prepare emotionally and practically. Poor or delayed communication, however, left some feeling blindsided and distressed.

Dr Vandersman shared one example of a daughter who didn’t realise her father was dying until a manager clearly explained what was happening. “That conversation, though painful, helped her begin to process what lay ahead,” she says. “It’s a reminder that communication isn’t just about information, it’s care.”

After-death rituals provide meaning, connection, and validation

Small but intentional rituals around death made a striking difference for families. Staff forming a guard of honour, attending funeral services, or even offering a simple goodbye were described as deeply meaningful acts.

“These rituals offer more than closure; they validate the emotional journey of families and staff alike,” Dr Vandersman says. Families felt reassured that their loved one mattered – not only to them, but to a community of care.

Rethinking grief support in aged care

Traditional bereavement models typically focus on post-death support. This research argues that approach is too narrow for the realities of aged care. Grief is present throughout the resident and family experience, and systems need to reflect that.

Professor Jennifer Tieman, co-author and Director of RePaDD, says support should be embedded from the beginning: “Timely end-of-life planning, support, post-death rituals, and ongoing ties with the care facility can help family caregivers cope with grief.”

Key recommendations include:

• acknowledging the emotional toll of transitioning a loved one into care

• maintaining meaningful family involvement

• fostering open, early conversations about decline and end-of-life

• providing culturally sensitive, personalised support

• strengthening relationships and trust between staff and families

  
  

Grief as part of the aged care experience

What this research makes clear is that grief isn’t a separate chapter – it’s woven through the entirety of aged care. Families, staff, and communities all experience it in different ways, and each plays a role in shaping how it unfolds.

“Ultimately, if we want to support families well, we need to see grief as part of the whole aged care experience,” Professor Tieman says.

The study, “I thought he had longer than that”: Family caregivers’ experiences of grief, loss, and bereavement in residential aged care, is published in BMC Palliative Care and funded by the South Australian Department of Health and Wellbeing.

Source: This article was originally published on https://www.agedcareguide.com.au/talking-aged-care/navigating-grief-in-the-aged-care-system-why-support-must-start-long-before-end-of-life

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