When I first became a hospice social worker I was taken aback to realize that more than half of my patients were diagnosed with advanced dementia. I had been under the assumption that I would be working with mostly people with cancer or other chronic illnesses such as COPD (Chronic Obstructive Pulmonary Disease) and CHF (Congestive Heart Failure). While many of my patients have suffered from those maladies in the latter category, the prevalence of dementia is rather high. After seven years as a social worker “in the trenches,” I would have to learn a whole new skill set if I was to survive and thrive in hospice.
Most of these patients eventually end up in nursing facilities as the burden of their care becomes too great for family members to keep them at home. In visiting such facilities I came to find that many more people than just those in hospice were in various stages of dementia. It is a fascinating phenomenon with several different causes, but I have developed my own way of working with these individuals based on their current level of capability to engage interpersonally. That being said, I have also acquired several pet peeves regarding the treatment they receive from other medical professionals.
Aside from the ways dementia affects different people on a physical level (ability to ambulate, muscle contraction, etc.), the mental symptoms range from extreme forgetfulness to devastating interpersonal impairment. I have had some of the most pleasant conversations of my day sincerely answering the same three questions over and over again for an hour with the same patients, ones who are able to converse, but have little to no short term memory. I have also spent much time in constant redirection and assurance with people that can no longer recognize relatives with whom they have spent the last eighty years. I have seen these individuals coddling realistic looking baby dolls as part of their care and have played music for people that are nearly catatonic, only to watch their bodies come alive with movement at the faint and automatic memory of their favorite songs, something that blessedly seems to remain long after their ability to speak has faded. I have heard ninety year old patients insist that their mother had just been to visit them or that their young children were running around the facility.
The common thread with which I approach these wounded patients is a measured gentleness that preserves their dignity and, to the greatest possible degree, facilitates their comfort in the immediate moment. For most of these people the present moment is all they have. Thus my preferred method is to redirect them in conversation and to by no means challenge their obviously factually incorrect assertions with harsh reality. If an elderly woman whose mother has obviously passed insists that she must know when (her mother) will be visiting, I will respond that she’ll probably be around later. I have witnessed facility nurses and aides confronting such patients with the fact that their mother will not be visiting because “she’s dead,” repeating this every time the person asks. I will just as gently take such workers aside and explain that they are effectively breaking the news of the death of a patient’s loved one several times a day, each instance with its own accompanying trauma.
Another pet peeve is when I see people with dementia being treated like children because “they don’t know any better.” Almost every culture in the East has, currently or at some time in their history, had a practice of revering their elders simply for the fact that they have lived longer and accrued more life experience than most. Watching people with little wisdom earned through the kind of adversity their patients have faced treat said individuals as mere nuisances to be quieted makes me sad to say the least. I labor under the belief that my patients are people, whether they be completely lucid and able to participate in conversation or if they are unresponsive. As such, I also believe that each of these persons have the right to my full presence and attention and that, while their minds may have been rendered functionally impaired, their spirits are perfectly intact and engaging with mine. In short, I am no better than these people just because my mind is still functional.
Lastly, watching the pain endured by the family members of such patients is nearly unbearable. They faithfully and dutifully make their regular visits in the vain hope that they will see even the briefest signs of recognition in the eyes of their loved ones, only to inevitably leave disappointed and heartbroken. They deserve to know that their family members are being treated with the highest level of respect and dignity and with a kindliness and gentleness reserved for the most vulnerable amongst us.
Please remember this the next time you encounter a person with dementia. They are locked in a special kind of hell that I hope you and I will never have to experience.