Truth that Matters

Photo by Danie Franco on Unsplash ABSTRACT This research paper explores the family caregivers' role in resolving ethical dilemma of deception dementia care. Family members possess unique capability to engage "white lies" a manner that both respects and upholds an individual with dementia's identity. INTRODUCTION It was our usual Shabbat dinner: golden flames flickered crystal candleholders, smell warm challah permeated air. “Where is Elena?” my great-grandmother anxiously asked, scanning doorway. “I am here, sitting right next you, babushka!’’ mother affectionately reassured her. Having raised Russia, Tsilya, then her early nineties, had resided Riverdale home for several years. “No, I know you are but where little Any attempt explain “little Elena” grown into adult only agitated great-grandmother. She eventually calmed down, distracted promise scrumptious meal. As Tsilya’s mind wandered back reality past, Elena young girl living modest flat Leningrad, what we believed temporary moment confusion turned out be first glimpse future. Over few years, as Alzheimer’s disease brought cognitive decline, erasing memories taking identity them, concerns about transformed attempts at leaving house attend parties hosted television celebrities. would also cry ask own night. In beginning, always tried uphold truth reorient situation. However, decline advanced, often redirect attention photo albums or, moments extreme distress, resort occasional “white lies” validate some inaccurate beliefs. My mother’s actions provided such solace felt so instinctive never questioned legitimacy strategies mitigate great-grandmother’s distress. Nevertheless, over last two decades, issue truthfulness care has become object study contemplation medical professionals ethicists alike. I. Person-Centered Care People Dementia Most current discussions people begin principles person-centered care, revolutionary new philosophy introduced 1990s Tom Kitwood, English social psychologist gerontologist. Rather than treating person medical, protocol, task-based fashion, Kitwood advocates approaching patients through more holistic method considers environmental factors, rather patients’ biochemical brain changes.[1] The main tenets include awareness uniqueness individuality each person, recognition subjective nature experiences dementia, maintenance close relationships allowing them bonds lasting attachments their loved ones.[2] highlights importance interactions interpersonal “[T]o others,” writes, “means value who they are; honor do; respect qualities needs; help protect from harm danger; – above all take thoughtful committed action will nourish personal being.”[3] emphasizes need have “a standing or status accorded others.”[4] emphasis conferring personhood onto individuals others introduces challenge implementing If caretaker acknowledges may perceive disconnected present, compromise commitment absolute truth-telling. On other hand, if solely adheres objective truth, implicitly delegitimize dementia. II. Truthfulness versus Therapeutic Lying Scholars contemplating therapeutic lying hold different views. Some believe maintaining selfhood justifies deception, while claim uncompromised truth-telling can offer deserve others. dichotomy opinion presents moral institutions involved caring navigate this dilemma.[5] They profound understanding ones' identities stories, preserve without compromising integrity relationships. result, inclusion caregivers conversation permissibility facilitate implementation true dementia.[6] While central argument necessity rests human bonds, despite deception. article “Truthfulness Deceit Care: An Argument Truthful Regard Morally Significant Human Bond,” Dr. Philippa Byers, ethics researcher, rejects validity purposes Byers argues establishes trustful therefore should not denied grounds notion “truthful regard,” which she defines “regard another one whom matters, just it does oneself.” contends must avoided maintain truthful regard, paternalism condescension, caretaker’s relationship Despite seemingly uncompromising stance, approve refraining friend sharing same story again. [7] claims cares friend, forgo informing heard before making decisions “involving judgment, discretion, tact characteristic (most) respectful communication another…without suspending regard” person. communicating embody friends. due eschew blunt regard When get upset desire party celebrity when efforts redirecting failed, occasionally telling host cancelled inclement weather. truthful, statements did undermine served measure ensure safety preventing alone states “does require affiliative bonds.” [8] Yet, precisely existence imparts special privileges similarly way affords caregivers, therefore, introduce necessary judgment demands them. III. Inclusion Caregivers’ Perspectives Navigating Truth-Telling demonstrated significance navigating discourse justifying overlooks perspectives caregivers. Matilda Carter, lecturer King’s College London, insistence delegitimizes undermines dementia.[9] Carter norm patients, whose memory loss lead exist version reality, ableist construction disrespects perceived realities Therefore, “withholding and, limited circumstances, morally permissible, required.” “Ethical deception” justified act seeing lens “the type are.” Carter’s justification careful use violating example illustrating perspective negative consequences neglecting voices found case “How Much Patient Needs Know” Oliver Sacks.[10] short work, Sacks, neurologist best-selling author, describes Mr. Q., nursing resident been employed janitor his earlier Q. continued performing “duties” home. staff realized adherence former delusion, “respected even reinforced” Q.’s encouraging providing him instruments supplies janitorial duties. Initially questioning whether told condition, Sacks ultimately concludes holds meaning Q “pointless” “cruel.” aligns concept residential facility knowingly upheld erroneous philosophical framework attitudes towards considering caregivers’ deep wishes relatives. could encouraged activities convenience, minimize time needed Additionally, holding until very end. staff’s opportunity reality. meticulous deliberation Without consideration, driven ulterior motives disregard A 2020 lie” acceptable intended particularly caregiver really “‘kn[e]w person.’”[11] acceptance rooted belief knowledge [caregivers] experience allowed genuinely manner.”[12] Even significantly, emphasized consulting decision-making during later stages because these “knew mattered most.”[13] Since there no clear references beliefs family’s wishes, cannot fully confirm approach. Conversely, extensive years great-grandmother, coupled beliefs, provides safety. circumstances allows utilize diminishing truth. IV. Artificially Constructed Realities Regardless caregiver's intentions, critics reject leads artificial dementia.[14] Such inherently contradicts innate grounded idea developed American political philosopher Robert Nozick.[15] Nozick “experience machine,” device provide desired targeted stimulation. machine allow feel good “‘from inside,’” want “do certain things, doing them… way, sort person.”[16] Proponents Nozick’s ideas might draw parallel between hooked up since treatment already live frequent reversion past identities. upholding differs constructing de novo. Furthermore, offers passive existence, physically expected responsibilities artificially constructed well-being mind, those understand entails, genuine enable realize within bounds abilities. come focus De Hogeweyk, village advanced dementia.[17] opened its doors Weesp, Netherlands 2009, gated community single entrance exit residents receive twenty-four-seven care.[18] aims continuity residents’ lives grouping themed homes based previous lifestyles offering familiar events physical activities.[19] Through planning design, founders Hogeweyk integrated “deceptive” aspects institutional village’s infrastructure, including residences look like real homes, supermarket money, restaurant hair salon staffed trained do payment services.[20] Although closed facility, welcomes outside volunteers ages interact residents.[21] likened Truman Show, multiple report satisfaction Hogeweyk’s model care.[22] Ada Picavet, husband Ben shares visiting daily, playing piano, singing songs together. These serve sense normalcy life diagnosis.[23] deceptive Ben’s abilities, Ada’s visits demonstrate husband's recognizes shapes perception world maintains enjoyed together singing. By portraying ones partners Sanjay Gupta, CNN underscores addressing dilemmas preferences Kitwood’s individuality, dignity, infrastructure environment contribute immersive resonates histories world, depth connections village. employ carefully considered acts beneficent undermining transcend limitations love dedication fundamental truths matter. CONCLUSION At end life, Tsilya longer recognize communicate members. sit quietly, staring wall. spend every day, simply hand stroking hair. eyes everyone else around mother, surrounding number suffering continues rise, future studies examine ways helping establish - [1] Matthew Tieu, “Truth Diversion: Self Other-Regarding Lies Care,” Bioethics 35, no. 9 (2021): 858, https://doi.org/10.1111/bioe.12951. [2] “The Concept Personhood Its Relevance New Culture Care.,” Care-Giving Dementia: Research Applications, ed. Bere M.L. Miesen Gemma M.M. Jones, vol. 2 (Routledge, 1997), 10-11. [3] 3. [4] 4, 11. [5] See “Holding One Another (Well, Wrongly, Clumsily) Time Dementia,” essay Hilde Lindemann, bioethicist, examines dementia’s [6] specifically concerned informal children, relatives, romantic partners, opposed formal paid establishment. For on, lessons learned creating guidelines United Kingdom’s Mental Health Foundation 2016 “What Truth: Inquiry Truth Care” further discussion regarding non-family stories values 231-232. 234. [9] Deception? Responding Parallel Subjectivities Living Disability Studies Quarterly 40, 3 (2020), . [10] Know,” Yorker, February 25, 2019, www.newyorker.com/magazine/2019/03/04/how-much-a-dementia-patient-needs-to-know. [11] Dympna Casey et al., “Telling ‘Good White Lie’: Views Their Carers,” 19, 8 (2020): 2583. [12] 2593-1594. [13] 2595. [14] Sparrow Linda Sparrow, “In Hands Machines? Future Aged Minds Machines 16 (2006): 155, https://doi.org/10.1007/s11023-006-9030-6. [15] 155. [16] Richard Nozick, Anarchy, State, Utopia (Basic Books, 1974), 42-43.CNN’s World’s Untold Stories: Village (CNN, 2013), www.youtube.com/watch?v=LwiOBlyWpko. [17] CNN’s 02:00-02:13, [18] Village, 03:45-03:53. [19]CNN, 05:10-06:00. [20] CNN, 14:45-15:30. [21] 20:20-20:40 [22] 06:50-07:55. [23] 10:20-12:20