Having to let the one I love to go into an aged care home has been traumatic. But I couldn’t look after her anymore. I had no choice; she required more care than I could give. It wasn’t supposed to be this way – I’ve got dementia, and we thought I would go first. It has been very distressing.
The trauma hasn’t just been about the decision for my wife to go into aged care. I have also found it traumatic to watch her decline. She is suffering, and that is difficult for both of us, for different reasons.
It's been traumatic to see her so vulnerable and to know that she is aware of how vulnerable she is. She is completely dependent on staff for care and on me for emotional support. When she feels scared or vulnerable, or when something goes wrong with her care, that’s when I feel it the worst. Even though I am not providing her physical care, I am responsible for her, and that responsibility weighs heavily on me.
Because I am responsible for her, I can't go away and leave her behind. I still love her. But it is difficult for me to watch her suffer, and then there is the conflict for me because I think I shouldn’t be feeling what I feel. I wish I was a better person for her. I have carer guilt.
So, there are all those layers of trauma, those stressful and distressing issues related to her care that I need to deal with. On top of that, there are difficulties with my own dementia journey, making it even more complex to navigate my relationship with my wife and with the staff who care for her.
Steve Grady describes the everyday trauma that family members may experience when older people access aged care services. Steve’s experiences are not uncommon, but they are uncommonly considered. This isn’t surprising, since the principles of trauma-informed care have only recently been applied to the experiences of older people and aged care service providers.
In the aged care sector, we need to talk about the influence of family trauma on aged care and older person’s advocacy. An understanding of trauma in these contexts can help to ensure we achieve the best possible outcomes for the older client. However, many service providers feel ill equipped to work with traumatised families.
To help bridge this gap, this article outlines family experiences related to everyday trauma and trauma associated with the abuse or neglect of an older person accessing aged care. We also provide practical strategies for a trauma-informed approach.
Everyday trauma
As Steve’s story shows, family members can experience trauma when someone they love requires aged care services. Their distress can be further heightened by their awareness of stories of neglect and abuse in aged care.
Distress is often present where there is trauma, and may relate to:
quality of care: fears about abuse, neglect and the quality of the aged care services
carers guilt: internal conflict related to being unable to meet the older person’s care needs without support
grief: sadness at being physically separated from a partner or other family member when an older person goes into residential aged care
vulnerability: difficulty coming to terms with declines in the older person’s health and independence.
Distress may manifest in unexpected ways, as Catherine’s example highlights:
When I was a Nurse Unit Manager in residential aged care, we had a well-deserved reputation for great care. Our team worked hard and often went above and beyond to help make sure residents lived their best possible life. But often, when little things went wrong, like missing laundry or food issues, family members would get very, very angry with us.
I remember thinking the responses were disproportionate, that families were not being very generous or forgiving. In retrospect I can see the missing laundry or food were triggers for a trauma response.
Aged care service may tend to label families as ‘difficult’ when their responses seem disproportionate. However, viewing these responses through a trauma lens can build an understanding of what the families are thinking or feeling. This can help enable conflicts to be resolved and services to be improved.
A trauma lens is particularly important following a serious incident.
Serious incidents and trauma
Bearing witness to abuse, neglect or other serious incidents may cause family members to be traumatised. This vicarious or secondary trauma is worsened when service providers do not practice open disclosure, particularly providing, an apology and communicating or undertake efforts to improve care.
Family trauma is particularly exacerbated when the harm caused by an incident is downplayed. Catherine shares an example:
Sally phoned me to say she walked into her mother’s room in an aged care home to find her mother being sexually assaulted by a male resident, who was lying on top of her.
The staff who responded to Sally’s call for help told her that the residents were just having a cuddle and that it was their sexual right to do so. The staff added that it was also okay because her mother’s dementia meant she would forget what happened tomorrow.
Sally’s trauma at witnessing the sexual assault of her mother was exacerbated by the failure of staff to acknowledge that a sexual assault had occurred. Sally was concerned that staff would not keep her mother was safe. The responses of the staff not only put Sally’s mother at risk of further sexual assault, but also traumatised Sally and her family.
While the first priority of aged care staff is to ensure the older person is safe and receiving quality care, it is also important to understand how to work with traumatised families. A trauma lens can assist in these instances.
How to apply a trauma lens
Applying a trauma lens to working with families is particularly important when difficulties or conflict between the service providers and the families arise. In this context, the trauma lens aims to help the service providers understand the family’s perspective so that opportunities to improve care and services for the older person can be identified.
Seeing conflict with families as an opportunity to identify opportunities to improve care and services is one way to apply a trauma lens to the situation.
Where opportunities for improvement exist, service providers could:
invite family members to share their concerns
invite family members to identify suggestions for improved care
practice open disclosure – for example, provide an apology and discuss strategies to improve care and services
implement the improvements as discussed and communicate these with families
Sometimes, difficulties with families arise and there are no recognised opportunities to improve care and services, or the preferences or needs of the family members conflict with those articulated by the older person. If this happens, seek support from older person’s advocacy services.
Taking a trauma-informed approach to working with families does not prioritise the needs of families over the older client. Rather, it acknowledges the important role families play in care and advocacy, particularly when an older person is unable to communicate their experiences and needs.
About Dr Catherine Barrett
Dr Catherine Barrett is the CEO of Celebrate Ageing Ltd, a charity combating ageism and building respect for older people. She has been working with older people for over 40 years, as a nurse, academic and thought leader.
About Steve Grady
Steve Grady is a dementia and aged care advocate. He lives with dementia and is a living experience advisor on several research projects and an advisory committee member on several local health networks promoting aged care and dementia reform.
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