The Australian population is ageing rapidly. An important part of this demographic shift is the increasing prevalence of multiple chronic conditions, particularly in the later years of life. As a result of complex care needs, there are a growing number of people living and dying in Residential Aged Care Facilities [RACFs] [1].
Currently, over 270,000 Australians live in RACFs [2], and over a third (36%) of all deaths in Australia occur in RACFs [3]. In addition to this, every year, family caregivers of over 61,000 older Australians are involved in making the decision of placing their loved one into an RACF.
For family caregivers the sense of grief and loss is known to start as early as the time of their loved one’s transition to the RACF and continues all the way through to the resident’s death, and the post-death period [4, 5].
The growing proportion of older Australians with complex care needs means that more and more older people will be transitioning to, living, and dying in the residential aged care setting. As RACFs continues to be the ‘last home’ for many older Australians, there is a need to recognise, acknowledge and support family caregivers’ grief.
As a part of the South Australian Government Department for Health and Wellbeing (SA Health)’s Palliative Care 2020 Grants Program, we were funded to carry out a six-month project that aimed to develop electronic and printed resources to support the grief, loss, and bereavement needs of the family of those living in, or entering, residential aged care.
The project was undertaken by the Flinders University Research Centre for Palliative Care, Death and Dying (RePaDD) in collaboration with Southern Adelaide Palliative Services (SAPS) of the Southern Adelaide Local Health Network, and GriefLink. The electronic and printed resource development was guided by two key pieces of work: (i) a systematic review of the peer-reviewed literature, and (ii) interviews/focus-groups with family caregivers and aged care staff from RACFs across South Australia.
The findings from this work strongly suggested that grief and loss were experienced not only from the point of death but from first thinking about aged care entry. The point of transition to an RACF was identified as an emotionally difficult time surrounded by emotions such as guilt, loss, abandonment, and shame.
These emotions were often exacerbated by contextual challenges such as the transition decision being made unexpectedly and at a time of crisis (hospital admission), and the financial aspect of the RACF transition. Even after entry, there were emotional challenges for families as they navigated episodes of decline, hospital visits and often conversations that death was now expected in the very near future.
Across these difficult transitions support from the RACF as well as their own informal support network (friends, family, faith, and community groups) were seen as critical. Family, carers and the resident were also assisted during and after entry to RACF by ongoing and meaningful family engagement in the resident’s life and their care. Encouraging family caregivers to participate in resident’s hands on care, care planning, leisure activities and overall day-to-day life could all help minimise family caregivers’ sense of grief and preserve their caregiving role.
When dealing with a resident’s health decline and end of life, the value of timely communication with the family caregivers was clear. Although difficult, acknowledging that death is expected was seen as important. These conversations could not only help families be aware and ready for their loved one’s death, but can also minimise the risk of complicated grief, and other bereavement associated complications among family caregivers.
As well as death preparedness, enabling the family’s presence in the last days of life and supporting their caring was seen as part of a good death. Being there with the resident in the final moments of their life was immensely valued by families.
While death is an important and emotional event, after death rituals, such as: room blessing, memorial service, RACF’s involvement in the resident’s funeral; can hold a particularly significant value to family caregivers, fellow residents and staff caregivers.
Such rituals can enable family caregivers to structure their grief, help them to mark their loved one’s death as a ‘transition’ and/or to acknowledge their ongoing connection, as well as the unique humanity of the resident [6]. Overall, these findings suggested that bereavement needs and supports are complex, yet very important.
Informed by these integrated findings of the systematic review and the interviews/focus-groups with family caregivers, and aged care staff, we developed a Bereavement Booklet titled: When someone dies in residential aged care: Grief and loss for families.
The booklet content was enhanced by a set of tips for families. The voice of staff and families are directly included in the booklet through the use of quotes derived from the interview/focus-group data. Some content on issues associated with people living with dementia and with the implications of COVID-19 has also been included.
The print version of the booklet has been sent out to RACFs across South Australia as per the SA Health grant requirement. The electronic (PDF) version of the booklet can now be downloaded from the RePaDD website, and will also be made available for access to all via the CareSearch and palliAGED soon.
For more information on this project please contact Dr Priyanka Vandersman.
References
- Australian Institute of Health and Welfare (AIHW). Interfaces between the aged care and health systems in Australia—first results [Internet]. Canberra: AIHW; 2019 [updated 2019 Nov 15; cited 2021 April 14].
- Australian Institute of Health and Welfare (AIHW). Australia’s Welfare 2019: data insights [Internet]. Canberra: AIHW; 2019 [updated 2019 Sept 11; cited 2021 April 14].
- Australian Institute of Health and Welfare (AIHW). Cause of death patterns and people’s use of aged care: a Pathways in Aged Care analysis of 2012-14 death statistics [Internet]. Canberra: AIHW; 2018 [updated 2018 Jan 24; cited 2021 April 14].
- Sanders S, Ott CH, Kelber ST, Noonan P. The experience of high levels of grief in caregivers of persons with Alzheimer's disease and related dementia. Death Stud. 2008;32(6):495-523. doi: 10.1080/07481180802138845.
- Garity J. Caring for a family member with Alzheimer's disease: coping with caregiver burden post-nursing home placement. J Gerontol Nurs. 2006 Jun;32(6):39-48. doi: 10.3928/00989134-20060601-07.
- Doka KJ. Spirituality, loss and grief: The double-edged sword. Bereave Care. 2002;21(1):3-5. doi: 10.1080/02682620208657535
Dr Priyanka Vandersman, Researcher, Research Centre for Palliative Care, Death and Dying (RePaDD), Flinders University