The Comforting Truth of Dementia Care
Why being "objectively" truthful isn't the same as being compassionate
For two years, from the fall of 2018 through the fall of 2020, I worked as a DAWN Dementia Care Specialist for Palouse Dementia Care. This period of time with my community’s elderly population and the opportunity to hear their stories was one of the most formative experiences of my young adult life. Observing the terrible trials and progression of dementia is a large reason I am pursuing a degree in public health.
Urged by my selfless boss and mentor, Judy Cornish, I wrote an opinion article, somewhat in response to an article published in The New Yorker, titled “Comforting Fictions of Dementia Care”. I titled my response “The Comforting Truth of Dementia Care”, and it was published in the Moscow-Pullman Daily News in July of 2019. I’m pleased to share it with you now.
It is projected that by 2050, nearly 14 million Americans will be living with Alzheimer’s disease, tripling today’s total (2019 data). Currently, a third of all seniors pass away with some type of dementia, and Alzheimer’s alone is the sixth-leading cause of death in the United States.
The standard method of dementia care today is known as “reality orientation”, which utilizes corrective measures when one with dementia forgets something or says something untrue, often leading to confusing, or embarrassing experiences for the afflicted. Considering dementia and Alzheimer’s patients rarely undergo substantial reversals of their symptoms, I suggest that we, the family members and caregivers, adjust our own behavior, rather than expect it from the opposite party. Would it not be comforting to learn an alternative technique, one which reduces uncomfortable moments and provides family members and caregivers with clear feedback that confirms their care is appreciated?
In the 1990’s, Penny Garner pioneered a novel person-centered approach to dementia care, focused on entering the mental world of the patient and doing whatever possible to validate their feelings and ease their anxiety. At the time, while caring for her own mother with dementia, Garner realized certain roles elicited more comfort than others, one of which was waiting in line at the airport. As time passed, whether they were in line at the grocery store or a doctor’s office waiting room, Garner was comfortable allowing her mother to believe she was at the airport, if that limited her distress.
Garner found that as one loses their capacity for autobiographical memory—the function of our brain that allows for the remembering of a coherent life story—they can become untethered from the reality deemed “objective”. Garner continued developing her model of care while working with the dementia population after her mother passed, and would often employ thoughtfully selected white lies, protecting the sick from harsh and unnecessary truths. To quote Larissa MacFarquhar, “to lie is to violate the respect that one person owes another; but lying to a person with dementia can protect them from awful truths that they have no power to alter”. We are comfortable compassionately lying to our children in the name of protection, so why not utilize the same idea with our elders, who may be in a comparable state of lessened cognitive ability as children and young adults.
Dementia and Alzheimer’s disease impair one’s rational, linear streams of thought, while intuitive thought and recognition of natural beauty remain intact. Within the realm of dementia care, and perhaps the conversation of aging at large, I feel the perspective must shift towards a palliative care way of thinking, rather than attempting to return the patient to some accepted level of independent functioning. As family members, there comes a point where we must detach from our personal desire for the afflicted to return to the rational, coherent person we once knew, and guide them towards appreciation of the intuitive and fundamental human emotions of love, beauty and gratitude.
It is no secret that geriatric care in America suffers, due in large part to individualistic and economic aspirations. The drive for career success leads young adults to move vast distances, chasing upward vertical mobility, and away from parents who will eventually require care. This is in stark contrast to many collectivist countries, where the needs of family and community outweigh those of the individual. Family members, friends, and neighbors unite to accept the burden involved in caring for someone with an illness or debilitating disease.
There is a disconnect in Western society between caring for our young ones and for our aging parents, and it is this cyclical relationship of family care that I believe to be the core of the geriatric care debate. Child rearing is viewed as a privilege and honor, while providing care for our parents is often seen as just another chore or obstacle in our busy lives. We forget that the sympathetic care we hope to receive someday from our children is the exact same care that we dread performing for our own parents. It is not a question of if you will eventually be faced with providing dementia care for a loved one, but how both you, as the caregiver, and the care recipient perceive and appreciate the care.
If you or someone you know is fulfilling the praiseworthy role of unpaid dementia caregiver for a spouse or family member, I recommed the works of Palouse Dementia Care’s founder, Judy Cornish, which are titled Dementia With Dignity: Living Well with Alzheimer's or Dementia Using the DAWN Method, and the shorter The Dementia Handbook. These books are based on Judy’s decades of person-centered care for those with dementia, and provide hope and optimism in the face of a debilitating and irreversible disease. Both can be found on Amazon, or through the Palouse Dementia Care website.
Thank you for reading and have a lovely Monday!
-Kyle