As National Alzheimer’s Disease Awareness Month, November focuses the nation’s attention on the looming healthcare crisis that Alzheimer’s disease – with its devastating impact on the affected and their families – presents. For some, this November is a time to advocate more strongly for research funding, for others it is to draw attention to the remarkable contribution – often to the detriment of their own well-being – that family caregivers throughout our nation make to the care of loved ones with Alzheimer’s disease. For me, it is one more opportunity to reflect on the continued humanity and extraordinary courage of people with Alzheimer’s disease as they face multiple losses throughout the prolonged course of their dementia. It is a month to think about how to best love people with dementia. In that vein, I offer my reflection on what makes it so incredibly easy for me to both accept and love them just as they are.
Nearly 30 years ago, I started my career in Alzheimer’s disease by working as a clinical trainee during my doctoral training in psychology at the Community Assistance Program for Seniors, a small adult day center in Pasadena, California. It struck me then, even as it does now, that people with dementia have an extraordinary ability to live in a rich emotional world that those of us who are cognitively normal miss. In a “hypercognitive” culture that values intellect, productivity, and individualism, the significance of less tangible relational, spiritual, and emotional qualities to humanity are lost.
Every time I interact with a person who is affected by mild cognitive impairment or a form of dementia like Alzheimer’s disease, I must step back from connecting primarily through a world of ideas and thoughts to relating emotionally, in a manner that communicates a deep appreciation and understanding of the person whose memories and abilities are fleeting away. If I meet this relational challenge, I have the opportunity, as Martin Büber suggested, to experience the divine.
A few weeks ago I met with a monolingual Taiwanese woman who has moderate-to-severe dementia and her daughter, who served as translator. As I struggled to communicate through the dementia and language difference, I was able to piece together and appreciate the life of a woman who still recalled her greatest achievement as completing the 6th grade in then Japanese-occupied Taiwan. As we parted ways that day, she told me, to my surprise, that talking to me was pleasurable and bowed several times with her hands folded. In that moment, I realized that we had cut through the fog of dementia and language differences to connect emotionally.
Loving people with dementia comes easy to me. It’s a gift that my brother Christopher, who had Down syndrome, left me. After 26 years of living with and helping to care for him, I was burned out, just as many dementia caregivers are, and certainly wouldn’t have been able to see the positive I am sharing now.
Caring for my brother was taxing, as is caring for a loved one with dementia. Caregiving stretches the carer, whether a family member or professional, to grow as a person. My hope is that I can help families who have been affected by dementia to find new ways of loving even as caregiving takes its toll.
Caregiving requires knowledge, tools, and support, but most of all it requires an openness to loving the person at all levels. It is my wish that every caregiver can experience the profound emotionally and spiritually rooted form of love I’ve described here and draw on it as a resource when the going gets tough.