With the highest number of Holocaust survivors per capita outside of Israel living in Australia and a significant refugee population, aged care providers need to be attuned to the distinct care needs of survivors of torture and trauma.
Standing in her backyard in thongs on a cold winter’s morning, some 65 years after the end of the Second World War, Marissa*, now in her 80s, recalls vividly a particular day during the war when she stood barefoot in roll call in a Nazi concentration camp. The cool Melbourne air on her feet takes her back to that painful time, to the voices of the soldiers and to the tactile memories of the muddy earth beneath her.
For Holocaust survivors, everyday situations, objects or sensory stimuli can be potent reminders of their past trauma.
Declining physical and cognitive health can also erode past emotional and psychological defences, making late life a particularly vulnerable time for survivors of genocide and extreme trauma.
At Montefiore Home in Sydney, approximately 30 per cent of its residents are Jewish Holocaust survivors. Janine Grossman, the organisation’s director of professional services, says the move into residential aged care can be especially difficult for a survivor because of its potential to evoke earlier losses and feelings of displacement.
“Entering into an aged care facility does have the capacity to ‘retraumatise’ survivors by triggering memories of the traumatic losses they endured during the war such as a loss of possessions, independence, identity and forced removal away from family and friends,” she says.
“When survivors enter the home, there is the potential for them to be a lot more anxious or depressed around their admission, so we find their settling in time is a bit longer, they need a lot of support around it, and we have to give a lot of emotional support not only to the resident coming in, but also to the family because they have high levels of guilt around putting a survivor into a home.”
‘Triggers’ for traumatic memories
In addition to the challenges that can be experienced around admission, Grossman says Holocaust survivors can also have a heightened sensitivity to aspects of their care and physical environment.
Hoarding of food, anxiety in response to loud noises and a fear of showering related to the history of Jews being herded into the gas chambers by Nazi soldiers telling them they were going for a shower are common in the Holocaust survivor population.
“What would be a completely normal activity in any other aged care facility could actually be a trigger for a Holocaust survivor,” says Grossman.
“A lot of Holocaust survivors relate the fact that they had to steal food from loved ones in order to survive, so what we find is that residents hoard food in their rooms or they order a lot of food in the dining rooms but don’t eat it. A lot of residents also want to be served first for fear of rations running out.”
Grossman says staff are trained to identify behaviours and to respond by removing the anxiety-causing triggers, so for example those who are anxious about food are served first, residents are allowed to take food back to their rooms, and residents with a fear of showers are offered alternatives such as a bath.
Staff also work to build a strong degree of trust with the resident to avoid activating traumatic memories of humiliation and shame associated with their experiences in the concentration camps. This may translate into paying special attention to residents’ privacy and personal grooming due to the past indignity they have suffered.
Reminiscence activities widely used in other client groups are also avoided in this population because of their capacity to cause distress to survivors, says Grossman.
Holocaust awareness training
To promote staff awareness of the history of the Holocaust and sensitive caregiving to residents, all Montefiore staff undergo a full-day training program at the Sydney Jewish Museum, which includes a tour of the museum by a Holocaust survivor and an overview of Jewish history and culture.
Regular ‘environmental and situational trigger’ workshops are also held throughout the year and staff are encouraged to discuss the specific needs of survivors in weekly multi-disciplinary team meetings.
“By training staff to be aware of what might trigger distress or a traumatic memory in a survivor, we can remove that trigger and therefore alleviate adverse responses related to that fear,” says Grossman.
Person-centred approach
Dr Nancy Pachana, a professor in the School of Psychology at University of Queensland, says staff awareness and sensitivity is the most critical factor in improving the experience for older survivors of extreme trauma.
“The number one thing that helps people in aged care who have been through traumatic experiences is that staff are aware of their history of trauma and take an individualised approach to their care,” she says.
Dr Pachana says it is easy for aged care staff to misunderstand the needs of survivors or label symptoms of post-traumatic stress as paranoia or ‘difficult’ behaviour if staff are not aware the person is a survivor and don’t have an understanding of the long-term effects of trauma.
She acknowledges it can be challenging for staff if survivors are reluctant to talk about their past and have not shared much of their personal history with friends and family.
Special kind of caring
Karen Teshuva, senior research fellow at the Australian Institute for Primary Care and Ageing at La Trobe University, describes the distinct and complex care needs of survivors of genocide as requiring a ‘special kind of caring.’
Teshuva was the lead investigator on a research project that conducted in-depth interviews with 22 older survivors of the Jewish Holocaust and Cambodian genocide living in Melbourne, as well as family carers and aged care staff. The original project was supported by Jewish Care in Victoria following an identified need to prepare aged care staff for working with older survivors of genocide and mass trauma.
Teshuva is currently undertaking a secondary study to understand the meaning of effective relationships between formal caregivers and older trauma survivors.
Due to their past experiences, she says survivors of genocide have an elevated need to be genuinely cared about and to feel they have personal choice and control over their care. They also require a greater level of sensitivity, compassion and understanding around issues to do with personal care, assessment and medical procedures.
Her research showed it was important for aged care workers to be informed about past historical events to avoid inadvertently asking insensitive questions and that an interrogative questioning style was highly problematic. She says caring for older survivors emphasises the importance of understanding the client within the context of their life history.
Barriers to appropriate care
Building trust was seen as the key to developing effective working relationships with older survivor clients. However, high staff turnover and casual shift work were recognised as significant barriers to meeting this need for continuity of care and relationship-building.
Teshuva’s study also found that the recording and use of clients’ history of trauma in care plans varied between mainstream community service providers. Several community care workers reported that when they visited a new client they rarely knew anything about the person’s background and that they did not have access to this type of information.
For many older survivors in Teshuva’s research, increased frailty and dependency exacerbated intense feelings of grief and loss and resulted in worsening nightmares and sleep disturbances. She says this was in part related to survivors’ fears of ageing and illness, which they associated with the fate of the elderly and infirm during the Holocaust.
Teshuva says older survivors of genocide should be identified as a specific group in aged care and that staff training should also be distinct from general cultural competency training.
She says while it is helpful to identify common triggers among survivor populations, the uniqueness of each person’s experience necessitate an individualised approach to care. What could be a trigger for one Holocaust survivor may have no effect on another, she says. For example, Teshuva reported varying responses to the value of pet therapy among this client group due to the diversity of their trauma experiences.
Barriers to accessing services
A life-long distrust or suspicion of strangers stemming from their earlier trauma was also identified by Teshuva as a barrier to accepting formal aged care services in the home.
The study’s participants discussed a number of cases where home care was put in place but the older survivor did not open the door for the aged care worker.
Family carers and aged care workers also discussed how some Holocaust and Cambodian survivors had changed their personal information, such their name or age, in order to conceal their identities during the genocide period or to later facilitate their resettlement. However, key experts in Teshuva’s study reported that older survivors whose official documentation on arrival in Australia stated they were younger than they actually were, later had difficulty accessing aged care services when they needed them. Older Cambodians who entered Australia with false identities also experienced problems sponsoring family members to come to Australia to provide family care.
Wider implications
Teshuva says she hopes the findings of her study of older survivors of the Jewish Holocaust and the Cambodian genocide will contribute to raising awareness of the care needs of other refugee populations as they age in Australia.
Since the end of the Second World War, many thousands of refugees have resettled in Australia fleeing persecution and extreme torture and trauma as a result of ongoing wars and civil unrest. She says there are important lessons to be extrapolated to these communities to create a more responsive aged care system in the future.
*Original story told to Karen Teshuva, La Trobe University, as part of the ‘Caring for older survivors of genocide and mass trauma’ qualitative study (2010). Real name of survivor not used.
Resources: To raise awareness and support aged care workers’ knowledge of older refugees, the NSW Refugee Health Service has developed a resource to identify the specific needs of this community. The handbook, Enhancing the lives of older refugees: a self-improvement guide for community services, aims to guide aged care providers through key issues and implications of caring for this client group, including the long-term impacts of past trauma and diverse attitudes to ageing. Click here to access it.