The Virtual Dementia Tour
A recent article highlighted a Virtual Dementia Tour that "offers glimpse of shattered life." The Virtual Dementia Tour (VDT) was established by Second Wind Dreams, a non-profit dedicated to "changing the perception of aging," and VDT has been one of their primary educational tools (and fund-raising platforms) since the early 2000s.
The VDT, described as an "interactive learning experience" asks participants to complete five everyday tasks in 10-20 minutes, such as: folding towels, sorting laundry, setting a table, and brushing your teeth.
While completing these tasks, participants must also:
The VDT, described as an "interactive learning experience" asks participants to complete five everyday tasks in 10-20 minutes, such as: folding towels, sorting laundry, setting a table, and brushing your teeth.
While completing these tasks, participants must also:
- wear vision-distorting goggles (to simulate low-vision cased by diseases like glaucoma and macular degeneration),
- place rubber bands or tape on their thumb and pointer finger on their dominant hand as well as rubber bands or tape on their last three fingers on their non-dominant hand (to simulate arthritis and loss of hand motor skills),
- put corn kernels in their shoes and gloves (to simulate painful sensations that one might experience from peripheral nerve damage), and
- wear headphones that play a "confusion tape," which is a constant loop of environmental noises, voices, static, and sporadic sirens and beeps (to simulate confusion, disorientation, and memory impairments that are associated with dementia).
A participant in the "Virtual Dementia Tour" tries to set a table. (Shelley Mays / The Tennessean)
VDT is advertised as a research-based educational tool that ultimately encourages positive outcomes for carers. According to the Second Wind Dreams website:
Learning to create a positive environment for those with dementia can only come from attempting to walk in their shoes. Created by P.K. Beville, a specialist in geriatrics, this valuable, easy to follow experiential kit is designed to instill hope in professional and family caregivers, providing them with a tool to move from sympathy to empathy and better understand the behaviors and needs of their loved ones and patients.
Belville (2002) studied the VDT with 146 people who worked in the field of elder care and reported that "overwhelmingly, participants in the study came away with a heightened sense awareness of the plight of confused elders and a strong sense that the high behavioral expectations caregivers have for dementia patients are unrealistic and need to change" (p. 183).
Dementia vs. Disability Simulations
Although this simulation focuses on old age and dementia, one could argue that it could be classified as a "disability simulation," as dementia causes numerous impairments, which the VDT is trying to imitate for participants.
Disability simulations are often touted by non-disabled people as spreading awareness and educating others about disability. However, research has demonstrated that, overall, disability simulations are not an effective teaching tool (Flower, Burns, & Bottsford-Miller, 2007). Despite this, simulations continue to be used regularly.
Simulations have been discussed for many years in the disability community and in the interdisciplinary field of Disability Studies, and have been heavily criticized for "sending the wrong message" (Brew-Parrish, 1997). One of the major issues with simulations is their temporal nature. People are asked to "pretend" they have a disability for a very short time period, and, in this brief time frame, it impossible to truly understand the lived experience of a person with a disability. Simulations are often also dramatic and structured as a "game," with an objective and an end. This results in many participants reminding themselves throughout the simulation that "it will all be over soon." Furthermore, many disabled people argue that, following disability simulations, non-disabled people are more likely to:
Disability simulations are often touted by non-disabled people as spreading awareness and educating others about disability. However, research has demonstrated that, overall, disability simulations are not an effective teaching tool (Flower, Burns, & Bottsford-Miller, 2007). Despite this, simulations continue to be used regularly.
Simulations have been discussed for many years in the disability community and in the interdisciplinary field of Disability Studies, and have been heavily criticized for "sending the wrong message" (Brew-Parrish, 1997). One of the major issues with simulations is their temporal nature. People are asked to "pretend" they have a disability for a very short time period, and, in this brief time frame, it impossible to truly understand the lived experience of a person with a disability. Simulations are often also dramatic and structured as a "game," with an objective and an end. This results in many participants reminding themselves throughout the simulation that "it will all be over soon." Furthermore, many disabled people argue that, following disability simulations, non-disabled people are more likely to:
- believe life is tragic for people with disabilities, and/or
- feel thankful and grateful they do not have disabilities, and/or
- embrace the idea that it is better to be dead than disabled, and/or
- view disabled people as "inspirational" and "amazing" for living with a disability.
Disability simulations...fail because they place [participants] in a [one-time] position of disability, before knowledge about disability is acquired, usually resulting in emotions of loss, shock, and pity at how dreadful it is to be disabled. [Participants] experience their body relative to their usual embodiment, and they become so preoccupied with sensations of bodily inadequacy that they cannot perceive the extent to which their "disability" results from social rather than physical causes.
If we apply a Disability Studies lens to the Virtual Dementia Tour, it becomes clear that many of these same issues are reproduced with simulating dementia.
Dementia is a broad category that comprises many symptoms, but the VDT presents a singular experience of dementia. For instance, while it is true that people with dementia often do experience other age-related impairments such as vision loss or arthritis, not all people do as the VDT implies. More importantly, the VDT emphasizes the difficulty, frustration, confusion, and anxiety people with dementia may experience without also demonstrating that people with dementia can also experience joy and happiness. Therefore, although the VDT intends to be positive, I would argue that it actually presents a narrow, predominately negative view of dementia.
Evidence for this can be found in the comments people made following the VDT (Belville, 2002, p. 189), such as:
It is important to note that Belville (2002) did point out some positive outcomes for care providers who went through the VDT. For example, carers noted after that VDT that they viewed behaviors that they previously judged as "inappropriate" as "justified" and "understandable." Some care providers also discussed imposing "unrealistic expectations" on people with dementia because they expected them to complete tasks as non-disabled people would, in an "ordinary" time frame. People also recognized that a caring and comfortable environment would help keep people from dementia from becoming overwhelmed and frustrated.
However, at what cost were these positive outcomes achieved? Pity and empathy do not truly help people with dementia (or any other disabled people, for that matter). As Ladau (2014) argues, pity and empathy do not promote true acceptance or respect. Pity and empathy are also individual outcomes, but we need institutional and societal change. So let's move on from simulations. Let's consider other ways to educate caregivers, and all people, about dementia and moreover, how they might be a part of the change we really need.
Dementia is a broad category that comprises many symptoms, but the VDT presents a singular experience of dementia. For instance, while it is true that people with dementia often do experience other age-related impairments such as vision loss or arthritis, not all people do as the VDT implies. More importantly, the VDT emphasizes the difficulty, frustration, confusion, and anxiety people with dementia may experience without also demonstrating that people with dementia can also experience joy and happiness. Therefore, although the VDT intends to be positive, I would argue that it actually presents a narrow, predominately negative view of dementia.
Evidence for this can be found in the comments people made following the VDT (Belville, 2002, p. 189), such as:
- "We take too much for granted."
- "Humbling."
- "I feel bad for the residents [with dementia]."
- "I knew it would eventually end."
It is important to note that Belville (2002) did point out some positive outcomes for care providers who went through the VDT. For example, carers noted after that VDT that they viewed behaviors that they previously judged as "inappropriate" as "justified" and "understandable." Some care providers also discussed imposing "unrealistic expectations" on people with dementia because they expected them to complete tasks as non-disabled people would, in an "ordinary" time frame. People also recognized that a caring and comfortable environment would help keep people from dementia from becoming overwhelmed and frustrated.
However, at what cost were these positive outcomes achieved? Pity and empathy do not truly help people with dementia (or any other disabled people, for that matter). As Ladau (2014) argues, pity and empathy do not promote true acceptance or respect. Pity and empathy are also individual outcomes, but we need institutional and societal change. So let's move on from simulations. Let's consider other ways to educate caregivers, and all people, about dementia and moreover, how they might be a part of the change we really need.
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