Dementia poses many difficult challenges and choices to those living with the condition, and to those who are close to the person who has the disease. No one is spared the collective experience that dementia often causes when individuals and their families and friends and those in the role of professional caregivers are faced with as a result of the many cognitive and behavioural challenges that are often poignant and terrifying. During a recent media interview on the subject of behavioural symptoms associated with dementia and the array of potential interventions including medication therapy, I described to the media interviewer the special challenge that I have encountered when trying to address the complex and often terrifying events that affected holocaust survivors as their distant horrific experiences come to the forefront of their consciousness. This is usually much to the dismay of those caring or living with them who often seek some respite from health care professionals to help their loved one find relief from the horrors of their memories.
The interviewer, presumably as a way of categorizing the anecdote I was describing to her of a recent patient I saw in the clinic said, “Oh, I guess it is a post-traumatic stress disorder experience” which I agreed to without really having the chance to dissect and realize that the analogy was at best superficial. I realized that the comment an analogy did not fully capture the profound impact that the holocaust experience had for many of the older patients I care for and the effect that those life events of the holocaust itself added to what was for many a previous life as an outsider in a world in which they were never really welcome and for which the holocaust was a final devastating chapter on top of a life of fear and insecurity. I concluded to myself after the discussion that there was a different element to surviving the holocaust, especially in those from Eastern Europe that multiplied the concept of post-traumatic stress disorder as a way of understanding their experience of the holocaust and how it effects their life as they develop symptoms with dementia with its cognitive disruption and ultimately behavioural manifestations.
Most people who suffer the various iterations of post-traumatic stress disorder (PTSD) had prior to the event that was traumatic a reasonably “normal” life experience. That does not mean that everyone had a quiet, safe and sedate life but most did not have an experience of a comparable magnitude that was deemed to be the type of stress that can be categorized and sufficient to cause PTSD. Among the common events to which this syndrome has been ascribed is war and how it impacts soldiers who have survived,, people who have lived through natural disasters that resulted especially with the loss of life, either of close family and friends or of entire neighbourhoods or communities. For some it may have been a violent and close encounter as may occur in a capital crime such as a witnessed murder or the tragic loss of a loved one in other tragic events such as a motor vehicle accident. Whatever the cause, usually the preceding life experience was nowhere near the magnitude of the tragic occurrence as the event itself.
The difference that I have seen with many of the holocaust survivors that I have treated for dementia and related conditions is that prior to the holocaust they had witnessed or been subjected to a vast array of life-threatening, life-demeaning or harrowing experiences related to virulent anti-Semitism that was often rife in the communities that eventually succumbed to the holocaust period. However, there were some stark contrasts between different European communities and how the holocaust manifested itself. Those Jews that lived for example in most of Eastern Europe experienced severe and often individually murderous and harmful anti-Semitism long before the holocaust period as part of ambient culture and strong negative bias towards the Jews. For others such as the Jewish population of Germany that had endeavoured to be absorbed and accepted into the general community, the “shock” of rabid anti-Semitism and harmful actions was for many difficult to fathom or accept.
For many of the holocaust survivors that I have seen in my clinical practice, the memories of the past are often something that plagues them as the present and the ability to recall new items is lost and all they have to dwell on is the past. I remember one patient, a Polish holocaust survivor whose family was endeavouring to find a live-in support person to look after their mother as part of their commitment to try to keep her at home rather than have her admitted to a long-term care facility for which she qualified. They were looking for someone who could speak to her in her early spoken languages as with the dementia taking its toll, her English which in any event had not been well developed gradually slipped away and she reverted to her mother tongue which was Yiddish with Polish being remembered, but not used often.
According to the daughter in the distant past they had a Polish speaking housekeeper for her mother with whom she got along with quite well and there were never any problems between the two. The daughter found a Polish speaking person to be a support worker/caregiver to live in the home with her mother as a Yiddish speaking caregiver could not be found and those from other backgrounds that they spoke to were not able to communicate adequately with the mother for a relationship to develop. The daughter was very pleased to interview someone who had the qualifications she was looking for as a care provider who also spoke Polish. To the shock and horror of the daughter within a few hours of the person beginning her first day on the job she called the daughter and said she was being screamed at and cursed by the mother and wanted to leave which she did as soon as the daughter arrived.
The mother was in tears and shaking as she explained to her daughter that she was exposed to an anti-Semite and was fearful whenever the caregiver opened her mouth and spoke to her in Polish. She kept reiterating the threat she felt from being in the presence of someone speaking Polish and was sure the person had the intent of hurting her. No amount of explanation by the daughter was sufficient to calm her mother and get her to understand that they were no longer in Poland and that this woman was not a threat—needless to say the Polish caregiver did not return and an English-speaking Filipino woman with lots of experience and a gentle disposition was found with whom the mother managed to communicate adequately for her needs to be met.
To summarise my point, in order to provide an appropriate and sensitive level of care, when dealing with those patients who suffer from dementia and who are holocaust survivors, treating physicians and caregivers must understand that although there are some similarities between Holocaust survivors and those suffering from PTSD, there are many differences that need to be recognized as well. A more robust understanding of and attention paid to the pre-holocaust experience must be included in the evaluation of behaviour so that appropriate steps can be taken to minimize negative and frightening associations with past experiences.
Dr. Michael Gordon is currently medical program director of Palliative Care at Baycrest, co-director of their ethics program and a professor of Medicine at the University of Toronto. He is a prolific writer with his latest book Late-Stage Dementia: Promoting Comfort, Compassion, and Care and previous two books being Moments that Matter: Cases in Ethical Eldercare followed shortly on his memoir: Brooklyn Beginnings-A Geriatrician’s Odyssey. For more information log on to www.drmichaelgordon.com