Watching a loved one with Alzheimer’s disease (AD) or another form of dementia struggle to remember and communicate can be deeply upsetting…and frustrating and exhausting if you are his/her caregiver. People with dementia often are branded “empty”…“a shell of their former self”…or even “dead inside.”
Stephen G. Post, PhD, is a medical ethicist who has worked with this population for decades and also helped care for his own cherished family member with AD. He believes that these labels not only are inaccurate but stigmatizing and destructive. After all, we all age, and we all forget things. Individuals with dementia continue to experience awe and know love. They are human beings who simply happen to be further along on the continuum of human forgetfulness than most of us.
In fact, “we” are not all that different from “them”…unless we decide to value independence, intellect and the ability to reason over other vital human characteristics such as consciousness, creativity and the appreciation experienced when in the presence of others.
“Deeply Forgetful People”
When it comes to describing people with various medical conditions, words matter. As seen with the move toward putting the person before his/her disability—“a woman who uses a wheelchair” versus “wheelchair-bound woman” or “a boy with autism” versus “autistic boy”—prioritizes who the person is, as opposed to the condition. Similarly, we have moved away from stigmatizing, judgmental labels such as “crippled” or “crazy.”
So it makes sense to look at the 55 million people worldwide living with this condition in a new light. The term “deeply forgetful” is intended to help us notice and remember their dignity and the fact that they deserve care and love. The deeply forgetful may struggle to remember and communicate, but these limitations don’t strip them of their personalities, their artistic creativity and more.
Using respectful language also helps imbue caretakers with a layer of mindfulness that can encourage patience during trying encounters. More than that, it benefits the deeply forgetful person—no matter how advanced their dementia may be, people almost always respond better to health-care providers and caretakers who express caring and use kind language.
4 Ways to Connect
To date, there have been no great scientific breakthroughs in terms of eliminating Alzheimer’s or most of the other diseases that cause dementia. If pharmaceutical solutions remain out of reach, we need to get creative about how we treat and care for this massive and ever-growing population. The techniques below all encompass the “deeply forgetful” ideology, reminding us that these individuals should not be devalued or discounted.
Play music. The region of the brain involved in appreciating music is believed to be spared from AD and other dementias. This is why many deeply forgetful people light up when they hear music they identify from earlier in life.
Exciting findings: In 2020, researchers at the Betty Irene Moore School of Nursing at UC Davis found that nursing home residents with dementia who participated in a personalized music program called “Music & Memory” needed less antipsychotic and antianxiety medication…displayed fewer distressed or aggressive behaviors…experienced less pain and depressive symptoms…and fell less frequently. Other research has linked personalized music interventions with improved swallowing in people with advanced dementia, which may reduce the need for a feeding tube.
Try it: For 15 minutes a day, play for your loved one music that she enjoyed years ago. If faith and religion have historically been important to her, try a hymn. If your loved one used to sing “You Are My Sunshine” while putting you to bed every night, try that. Watching this person respond will remind you that she is “still there” beneath the surface…she just needed an alternative way to connect with you.
Resource: The Music & Memory nonprofit organization (MusicAndMemory.org) can help you use music in the care of a deeply forgetful person.
Expose them to art. Deeply forgetful individuals are capable of artistic creativity and appreciation. The famous Dutch-American artist Willem de Kooning painted for more than a decade after he was diagnosed with AD, and art therapy is considered a nonpharmacologic treatment for the deeply forgetful, improving self-esteem and providing a means of expression.
Fact: Deeply forgetful people “have a preserved capability to paint, with and without instructions, even those in the later stages” of dementia, according to a study at University of Gothenburg, Sweden, published in SAGE Open. Some deeply forgetful people may experience a newfound burst of creativity. Language abilities may be lost, but new painting or sculptural skills may emerge…even in those with no previous artistic experience.
Try it: Many memory-care centers offer art-therapy programs or host art exhibits for residents. If those aren’t available, try showing your loved one a coffee-table book of art…a book of interesting photos of celebrities from his younger years…or a book of well-known landmarks such as the Lincoln Memorial or Taj Mahal. You also can read to your loved one his favorite poetry. (Robert Frost’s “The Road Not Taken” tends to work well because it’s widely recognized.) Notice his body language, and ask questions about anything that seems to evoke a response.
If your deeply forgetful loved one is able to travel, try a day trip to a museum. Many of them—from The Met and The Smithsonian to The Nasher Museum of Art at Duke University and the Milwaukee Public Museum—offer programs specially curated for the deeply forgetful and their families or care partners.
Be open to surprises. One of my students told me about the caretaking relationship between his mother and his grandfather. Hours before his grandfather died due to complications from dementia, he experienced a period of lucidity. He looked at his grown daughter and reminisced about the old times, such as walking her to school. Then he told her how proud he was of her.
Sometimes called rementia or paradoxical lucidity, these bouts of awareness and other improvements can happen at any time…and often do, especially after positive stimulations such as personalized music, poetry reading, art or social engagement, or in the morning after a good night’s rest. The deeply forgetful person may have a lot to say, or it may be an emotional look or squeeze of the hand. Veterans may stand at attention and sing along when “You’re a Grand Old Flag” is played. These moments are what I call “surprises,” evidence that even though dementia is progressive and incurable, anyone can experience improvements, even if they’re short-lived.
Adopt a dementia support dog. Many deeply forgetful people find intense joy in having an unconditionally loving canine companion. Dogs don’t care if their humans struggle with memory loss—they’re happy to simply sit in a warm lap or be stroked, providing effortless affection and emotional soothing in return. Petting a dog can help calm a deeply forgetful individual on an emotional and physiologic level while providing a rotating roster of potential activities.
You don’t need a specially trained service dog to reap the benefits, though you can get one. Sometimes called “dementia assistance dogs” or “dementia service dogs,” these animals have undergone training to learn how to help their humans manage daily living, including providing balance support…fetching medication…and maintaining an eating and sleeping routine. You can learn more at 4 Paws for Ability (4PawsForAbility.org). But generally speaking, any loving, well-behaved dog can ease loneliness and anxiety and enhance mood. No currently available drug compares with what a dog can offer—for the deeply forgetful and for their caregivers, whose burdens can be somewhat lessened. Work has been done at University of Southern Maine going back two decades on the effects of animal-assisted therapy on agitated behaviors and social interactions of older adults with dementia. And, at UCLA Health, research in animal-assisted therapy indicates that even robotic cats and stuffed animals can be beneficial in moderating agitation.