Dementia and Depersonalization
Not long ago I was at a workshop on the “Spiritual Care for the Cognitively Impaired”. I didnâ€™t much like the title, but I understood what the workshop was about. I didnâ€™t like the title because it identified people with dementia by their disease, not as persons with a disease. But this is common in health care and I even do it myself sometimes. However, as I sat in the session, the presenter made a statement that I jotted down, because it was interesting and started me thinking. The statement, â€śNorth America is a hypercognitive society that views cognitive status as the measure of personhood.â€ť In other words, in our society personhood is evaluated based on oneâ€™s cognitive status. The more diminished a personâ€™s cognitive status, the less personhood they possess.
Working with folks experiencing cognitive decline and with those who work with them, sadly I have to admit that this is many times an accurate evaluation. To be honest, even though this idea flies in the face of what I believe about personhood, I sometimes struggle to treat as persons those whose cognitive decline has just about hit rock bottom. The church, if we are honest, is terribly dependent on cognition, on its members and adherents having the capacity to think well. The church is almost entirely dependent on words, and our ability to understand them and respond to them. Preaching is a highly cognitive activity. So guess where this leaves the people who once were involved as members of a church when their cognitive abilities begin to decline? Usually it leaves them drifting to the margins and sooner or later forgotten, simply because they are no longer seen as a person of value.
This may sound harsh and to be honest, it is harsh, but reality is all too often harsh. This approach to personhood â€śdepersonalizesâ€ť to one extent or another so many members of our race. It depersonalizes the person with dementia and the degree of depersonalization is roughly equal to the degree of cognitive decline. It is also true of people born with diminished cognitive ability or people who suffer brain injury due to stroke or head injury or other causes of cognitive decline.
How does this depersonalization look? One of the ways it shows up is that those who care for a person with failing cognition often talk about the person, when the person is present, as if the person were not even there. This is easy to do, after all, the person is not going to make any contribution to the discussion. But the act of talking about a person as if he/she were not even there is depersonalizing. It treats the person like an object that has no thoughts or feelings or relationships.
Another way we do this is that we stop asking the person with cognitive difficulties for their opinions, their likes, dislikes, preferences or we disregard what we know historically to have been important to that person. For example, Joe always wore a shirt and tie, even years after he retired and stopped going to the office. Saturdays, Sundays, Tuesdays, it didnâ€™t matter. He was known as the fellow who always wore a shirt and tie. Part of the way he saw himself and differentiated himself from others was the way he chose to dress. Once Alzheimerâ€™s struck and his decline reached the point of needing to be in a care home, the staff decided that Joe would be much more comfortable in a T-shirt. I wonder if the real reason might not have been that it was a whole lot easier to dress Joe if he wore T-shirts? Anyway, by ignoring what everyone who knew Joes knew to be his style, his preference to wear a shirt and tie, the staff began the slow but steady work of depersonalizing Joe.
Depersonalization also happens when we emphasize what a person can not do, to the point that we no longer think about who that person is. Throughout our lives our abilities differ. When I was one year old, I had certain abilities, they were different than the ones I had when I was seven and different again from the ones I had when I was 16 and different again when I was 24, and again when I was 45 and again when I was 60 â€“ you get the point. But just because my abilities change doesnâ€™t mean that I become more or less of a person. Person hood isnâ€™t measured by abilities or disabilities.
So what is personhood? One dictionary defines it as â€śthe state or condition of being a person, or individual human beingâ€ť. Not all that helpful. Another, â€śpersonhood is the cultural and legal recognition of the equal and unalienable rights of human beings.â€ť Better, but still rather lofty. Letâ€™s try this, â€śpersonhood is the state of being an individual member of the human race, due the rights and freedoms that are inherent in being human.â€ť When my wife and I brought our boys home from the hospital, it was immediately apparent that they were individuals. They were different, yet the same. They were persons, but unique. As they grew and developed this became all the more apparent. In every stage of their now 30 something lives, my boys have demonstrated, not by will or decision, but by their inherent personhood that they are unique and special individuals, with different likes and preferences, with different levels of ability in different areas. And none of those differences makes one more of a person that the other.
Iâ€™ve got a hunch that the real problem that results in our depersonalizing people with cognitive decline is our own discomfort with the change. We donâ€™t know how to relate, talking becomes less and less useful and most of us have so few relational tools beyond talking. So in our discomfort, we begin to view these dear folks differently, as less than, as pitiful. We begin to objectify them; we go for what is easy instead of what would honor what we know to be true about their personhood.
So what can we do about that? Well, those of us who still have our cognitive abilities, we can learn. We can read about dementia, not just the medical literature about its cause and treatment, but read stories of those have experienced it in their own relationships, talk to people who are living with and in the reality, find some good role models who successfully maintain the personhood of their loved ones even after their cognitive abilities have slipped away. Learn to speak with your heart, a language that doesnâ€™t need words to be understood. Learn to touch, become aware of your facial and body gestures, emotional language is not lost to dementia.
Carry on conversations, even if what the other is saying doesnâ€™t make any sense. Thereâ€™s a sweet gal that I visit with once or twice a week. The odd time an intelligible English word comes out, but for the most part, I donâ€™t know what she is telling me about. But I have been practicing conversation with her, I respond to her emotions, to the inflection of her voice, to her facial expressions and sometimes we have wonderful 15 minute conversations. They are satisfying to her, I find them satisfying as well and her personhood is honored.
Yes, our culture has become hypercongitive. We value thought and language so highly that if a person is no longer able to relate in that would, we can easily dismiss then as less than human. We can marginalize them because be believe that a person has value only as far as they can make a thoughtful contribution to society. Well, shame on us. If the golden rule means anything, I think it certainly means that we treat others the way we would like to be treated. If you were to be diagnosed with dementia or have a stroke that rendered you unable to speak or had a brain injury that left you without your cognitive capacities â€“ how would you like to be treated? I hope and pray that those who know and love me will treat me with dignity and respect, even if my capacities are compromised and diminished by dementia, a stroke or some other brian injury. I think you would hope for the same.
“The comments expressed here are those of the author and do not necessarily represent those of the Southern Health/SantĂ©-Sud Regional Health Authority or the Directors”.