Truth or No Truth?

by Marissa Steingold

Date

Content

Health

Don, a professional caregiver, walks into a room where Jeanie, a dementia sufferer, is playing with a doll. 

“Oh, hubby! There you are! I was just putting the baby to sleep,” she exclaims.

Jeanie cradles the doll gently as she passes it to Don, who manages a perfunctory smile through gritted teeth.  

Don feels ambivalent about participating in Jeanie’s fantasy, especially because Jeanie’s real fifty-something daughter appears distraught by her mother’s newfound interest in dolls. Jeanie’s daughter wants Don to tell the truth—that this is a plastic doll, and her husband passed away ten years ago—but if Don gives Jeanie the cold hard facts, she’ll be shattered. To make matters worse, Jeanie’s short-term memory is so poor that he’d probably have to break her heart over and over.

Caregivers face a difficult choice. While playing with dolls can improve the patient’s mood, this behavior may spark accusations of “infantilization” from family members. After all, adults are supposed to live in the “real world” rather than resort to permanent escapism. But later-stage dementia patients no longer hold down jobs or care for dependents, so they don’t really need to face reality. Playing with dolls, ironically, helps them feel responsible for others again; rather than taking exclusively from family members and caregivers, patients can “give back” for a change. 

I believe that role play can be highly beneficial to dementia patients as a palliative treatment. As long as the patient desires it, then his dignity will remain intact. In this article, I will discuss past and current attitudes toward truth-telling, cite the benefits of role-play and dispel some of the misconceptions surrounding “infantilization.”

Back in the early 1960’s, Lucille Taulbee and James Folsom’s “reality orientation” compelled geriatric psychiatric patients to unite daily in “classrooms” and recite undisputable facts, such as the date and weather.[1]  Unfortunately, reality orientation appears to have worsened some patients’ quality of life, so Cleveland social worker Naomi Feil’s “validation therapy” gained popularity in the 1980’s.[2] [3] As part of her belief that feelings are more important than facts, Feil encouraged caregivers to validate patients’ feelings without lying outright.[4]

Following Feil, Dasha Kiper—a journalist who once lived with a dementia patient—argues that repetition of habitual conversation and daily rituals enables the patient to impose order on his surroundings. That recognizable activity is comforting to the patient, as it provides some semblance of the status quo.[5] In my opinion, we should let the patient’s own orientation of reality govern our interactions rather than traditional reality orientation—whether that means incessant small talk or doll play.

Kiper notes that when a patient can’t remember who someone is, it may be more helpful to assign that person a role rather than outwardly showcase confusion.[6] Ostensibly, this leads to blurred lines between role play and mental confusion: does Jeanie understand that the dolls aren’t real, or that Don is not her husband? Though this befuddlement might bother us, the truth should not be told just to assuage our discomfort; only the mental state of the patient should be considered. 

Validation therapy is still the reigning protocol in the caregiving world, but critic Graham Stokes maintains that lying to those at their most vulnerable robs the elderly of their dignity.[7] In my view, we must be careful not to overlay our ideas of dignity onto the elderly. Dementia patients often engage in a myriad of activities that were once anathema to them. For example, my grandmother—a lifelong enemy of pets—spent her final days enthralled by the antics of a housecat. Whereas she scoffed at “dirty,” “low-class” pets in her youth, my grandmother was uninhibited by class-consciousness (or germs!) at age 96. Or maybe her tastes had just changed, for she also enjoyed coloring books and playing with dolls as an advanced senior—despite no prior enthusiasm for either of these activities. No one is suggesting that we force pets or dolls on unwilling patients, but if the patient suddenly expresses interest in them, then it is probably appropriate.

Moreover, “infantilization” sets up a misguided analogy to children, as children will eventually grow into responsible adults, while Alzheimer’s patients will only deteriorate. Caregivers should not be viewed as classroom educators; they only seek to improve quality of life in agitated or uncomfortable patients. Molly Fogel, director of Educational and Social Services for the Alzheimer’s Foundation of America explains that family members should not be dismayed by “babyish” play: “It’s not about us.  It’s about them and what they’ll enjoy.”[8]

Societally speaking, though, it’s hard to shake this discomfort, for we’ve decided that dolls, toys and playtime aren’t for adults. Once children start school, we impose structure on them, allowing only “recess” for play, and by middle school, playtime is a faint memory. Consequently, the toy industry is an 84 billion dollar industry that caps out at age 13. But perhaps we stop playing because we’re told to, and not because we don’t need it. 

Recent scholarship contends that daydreaming—an internalized form of role play—is crucial to the adult brain. In a 2012 study published in Psychological Science, Benjamin Baird et al found that mind wandering engendered creative problem solving.[9] We encourage role play in young children due to its ability to enhance socialization and creativity, and I believe that dementia sufferers can benefit similarly. Dementia patients experience great difficulty interacting with those around them, but when the patients at Sunrise Assisted Living interact with dolls, caregivers are often able to engage them in conversations regarding their actual parenting experiences.[10] Role play also stimulates smiling—a proven stress-reducer. In a recent study measuring both natural and forced smiles suspended with chopsticks, all smilers’ stress levels were lower than those who didn’t smile at all.[11] Psychoneuroimmunology specialists Lee Birk and Gurinder Singh Bains also found that smiling and laughter can improve memory.[12] 

I am suggesting that allowing the fantasy to continue may not only be the kinder thing to do; it may be the healthier choice. When we compare the deleterious effects of pharmalogical intervention—referred to as “chemical restraints” in the caregiving community—role play seems substantially kinder and gentler. Antipsychotic medications commonly prescribed to dementia patients increase mortality, movement disorders, diabetes and stroke risks, and may worsen cognition.[13] And these “chemical restraints,” though occasionally warranted, seem particularly “undignified” to me.

Dementia may manifest differently in each patient, so we need variable treatments to address variable symptoms. Paying close attention to each patient is the best plan of action, and if that person expresses a desire to play with dolls—or wishes to repeat the same conversation over and over—then we should probably indulge him. By allowing the patient to dictate his specific needs, establish his own world of comfort, participate in conversation, and maybe even smile, his quality of life should improve. As caregivers and friends, that is the greatest gift we can offer.

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[1]
Taulbee L. R., Folsom J. C. “Reality orientation for geriatric patients.” 

Hospital and Community Psychiatry 17, 1966, 133-135.

[2] Butler R. N., Lewis M. I. Aging and mental health: Positive psychosocial approaches. C.V. Mosby, St. Louis, MO, 1977.

[3] Feil, NW. A New Approach to Group Therapy. Unpublished manuscript, 1971.

[4] Ibid.

[5] Kiper, Dasha. “The Deviousness of Dementia.” The Guardian, 10/20/2015. https://www.theguardian.com/society/2015/oct/20/the-deviousness-of-dementia. Accessed 1/3/2019.

[6] Ibid.

[7] Quoted in MacFarquhar, Larissa. “The Comforting Fictions of Dementia Care.” The New Yorker, 10/8/2018. https://www.newyorker.com/magazine/2018/10/08/the-comforting-fictions-of-dementia-care. Accessed 1/3/2019.

[8] Quoted in Starr, Liane. “Should You Get a Doll for Grandma?” Care.com 4/27/2018. https://www.care.com/c/stories/15123/should-you-get-a-doll-for-grandma/. Accessed 1/2/2019.

[9] Baird Benjamin, Smallwood Jonathan, Mrazek Michael D, Kam Julia W.Y., Franklin Michael S, Schooler Jonathan W. “Inspired by Distraction: Mind Wandering Facilitates Creative Incubation.” Psychological Science, 23(10), 8/31/2012, 1117–1122

[10] Quoted in Gorman, Anna. “Doll Therapy May Help Calm People With Dementia, But it Has Critics.” 10/3/ 2016. NPR.orghttps://www.npr.org/sections/health-shots/2016/10/03/495655678/doll-therapy-may-help-calm-people-with-dementia-but-it-has-critics. Accessed 1/2/2019.

[11] Kraft TL and Pressman Sd. “Grin and bear it: the influence of manipulated facial expression on the stress response.” Psychological Science, 23 (11), 2012, 1372-8.

[12] Singh Bains, Gurinder and Birk, Lee. “Fight memory loss with a smile (or chuckle). Federation of American Societies for Experimental Biology (FASEB). ScienceDaily. 4/27/2914. www.sciencedaily.com/releases/2014/04/140427185149.htm.  Accessed 1/2/2019.

[13] See Mott S, Poole J, Kenrick M. “Physical and chemical restraints in acute care: their potential impact on the rehabilitation of older people.” Int J Nurs Pract. 11(3), June 2005, 95-101.