Research on dementia: Kerr excerpt #18

Dr. Christopher Kerr writes of dying patients having dreams or visions of renewing friendships with deceased friends and relatives:

The sample cases we have so far discussed show that, regardless of the types or length of lives led or experiences had, humanity’s final moments do not merely consist of a passive disintegration of the flesh. Instead, the course of dying is transformed by resurrected consciousnesses that inhabit the inexplicably heightened awareness and cognition of the dying. But what about people whose minds function differently? Those with cognitive or perceptual impairments, those categorized or labeled as mentally ill, demented, disabled or “neuro atypical,” and whose voices and stories are often hidden and marginalized in life? Do the labels and preconceptions that so often limit them in life, also do so at the end to prevent them from partaking of the complex spiritual transformation we have identified in others? Our research shows that dying people with cognitive and developmental conditions have rich and vibrant inner processes that include their loved ones returning to usher them peacefully into death.

Many patients whose cognitive impairment is severe, arrive at the end of life without the kind of alignment of inner and outer self that others achieve. Instead, these patients are estranged from their core self. The loss of cognitive functioning, often referred to as Alzheimer’s dementia, is an extreme example of that condition. The disease separates us from ourselves or from what Oliver Sacks refers to as the “inner state” in profound and irremediable ways. Unlike other afflictions, Alzheimer’s dementia creates a world where cognition unravels, yet emotions and senses remain the same.

People with dementia are typically excluded from formal research studies that depend on informed consent and therefore intact cognition. Yet, they should be considered if we are to do justice to the full range of human experiences at life’s end. And of course, disentangling the world of those suffering from dementia also entails considering the caregiver on whom they depend to navigate an unrecognizable world.

The descent into dementia typically leads to a disproportionate clinical focus on the patient’s challenging behaviors and their management to the detriment of the person’s buried psychological states of being. The clinical world may also inadvertently obscure the subjective world of those with dementia by only considering the loss of measurable cognitive abilities. The clinician may be continually drawn to observable behaviors and evidence of defectiveness. This clinical nomenclature becomes the currency through which we discuss patients, as we become overly reliant on assessing people’s inability to repeat numbers or recall the names of past presidents. In so doing, we ignore the view from inside, the richness within the subjective states of dementia. We fail to consider the lived experiences of people with dementia because we let our awareness of their condition obscure their personhood and consciousness. 

Christopher Kerr, “Experiences of the Dying: Evidence of Survival of Human Consciousness,” an essay written for the 2021 Bigelow Institute for Consciousness Studies in response to the question: “What is the best evidence for survival of consciousness after bodily death?” Dr. Kerr, MD, PhD, is the Chief Medical Officer and Chief Executive Officer for Hospice & Palliative Care Buffalo. The full text with notes is available at https://bigelowinstitute.org/contest_winners3.php.