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5/28/2014 April 25th 2014 Overcoming the Challenge of Rehabilitating Older Adults with Combined Vision and Hearing Loss Walter Wittich, PhD FAAO CLVT MAB‐Mackay Rehabilitation Centre School of Physical and Occupational Therapy, McGill University Department of Psychology, Concordia University My life in 3 sentences • 1991 Diploma in Musical Theatre Performance • 2004 B.Sc. Psychology • 2006 M.A. Psychology • 2010 Ph.D. Neuroscience • 2012 Post‐doc Audiology • 2013 Certified Low Vision Therapist • At MMRC since 2012 1 5/28/2014 MAB‐Mackay Rehabilitation Centre Mackay Centre since 1869 Montreal Association for the Blind since 1908 Outline • The story of demographics – Who are our clients? • The story of assistive technology – Can you use your devices? • The story of stigma – What are people talking about? 2 5/28/2014 The Canadian Picture The Canadian Picture 3 5/28/2014 The Canadian Picture The Canadian Picture • The Population is Aging! • 15% population 65+ in Canada (2011) • Projections predict 27.2% of population in 2056 • More seniors with Hearing and Vision loss • Prevalence estimates • 6-20% in older adults (Slaets, 2007; Smith et al., 2008; Schneider et al., 2012) • 8-30% in older adults with hip fractures (Lieberman et al. 2004) 4 5/28/2014 Aging and Sensory Impairment • Across 11 European countries (n = 27,536; age 50+) – 10.2% vision difficulties only (mostly AMD) – 13.5% hearing difficulties only (presbycusis) – 5.9% combined vision and hearing difficulties • Persons with combined loss are 2.2 times as likely to be socially inactive Viljanen et al., 2013 Some Vocabulary • Combined vision and hearing loss • Dual sensory impairment • Acquired deafblindness • Deafblindness – umbrella term in clinic • Dual sensory impairment ‐ researchers Wittich et al., BJVI 2013 5 5/28/2014 Trends in Time …the trend in America is away from blindness as a sole disability…We are increasingly called upon to serve individuals for whom blindness is only one aspect of a more complex and difficult disability configuration. Peter J. Salmon, Executive Director of the Industrial Home for the Blind, NY The New Outlook for the Blind, January 1965, p.15 Definition • “Deaf-blind, or deafblind, is a combination of hearing and vision loss of any varying degrees that affects a person’s ability to communicate, get environmental information, participate in the community, obtain and keep a job, and maintain independence.” American Association of the Deaf-Blind, 2010 6 5/28/2014 Dual Sensory Rehabilitation: Who are our Clients? Funding provided by Prevalence • In Canada 7 5/28/2014 DSI Space Quebec Eligibility Criteria 8 5/28/2014 Unique Opportunity • DSI Rehabilitation in Montreal – MAB-Mackay Rehabilitation Centre (E) • Hearing, vision, paediatric motor, communication – Institut Nazareth et Louis-Braille (F) • Vision only – Institut Raymond-Dewar (F) • Hearing only – All services free of charge to client Eligibility - Vision • In the better eye with standard optical correction of less than four dioptres, • VA (ETDRS or Feinbloom) – < 20/70 (6/21) – ≤ 20/60 (6/18) for individuals with a degenerative visual problem & perception of impairment • Continuous visual field < 60° including fixation measured on Goldmann or Octopus perimetry either horizontally or vertically • Complete hemianopia/loss of half the visual field 9 5/28/2014 Eligibility - Hearing • Average hearing detection thresholds (dB HL 35) measured at four audiometric frequencies (i.e., 500, 1000, 2000, and 4000 Hz) in the better ear, without assistive technology. • Children under the age of 12 years, if sufficient to be a potential threat to language development. • Youth between 12-18 years of age if the average hearing loss, in the better ear, is at least 25 dB HL • Working-age adults if the average hearing loss, in the better ear is at least 25 dB HL and if sufficient to have an effect on ability to study or work • Any individual, irrespective of age and degree of hearing loss, if they experience functional limitations due to hearing loss at school, at work, or in society in general Method • Electronic and paper chart review of all active DSI client files across the three agencies for the Montreal region • Multiple Impairment Program (0 – 21) • Dual Sensorial Program (21 – 100+) • Programme Surdicecité (0 – 100+) 10 5/28/2014 Results • N = 614 charts – excluded 50 who lived > 75 km from Montreal • N = 564 in analysis – 209 males (37.1%), 355 females (62.9%) – Range 4 months to 105 years – Montreal Census data for 2010 – Prevalence 15/100,000 Age Distribution 11 5/28/2014 Prevalence • In Canada Aging Legal Blindness 20/200 (6/60) 12 5/28/2014 Aging Legal Blindness 60 degrees Aging Profound HL 81 dB 13 5/28/2014 Dual Impairment The “deafblind” “Norma” VA Dual Impairment The “deafblind” 14 5/28/2014 Diagnostic Categories Wittich et al., 2012 Summary • 69.1% of clients over age 65 • 43.1% over the age of 85 • Statistics for the last year BEFORE the baby boomers reach retirement age • These older adults represent their parents 15 5/28/2014 Summary • Older adults have unique rehabilitation needs • Rarely only vision and hearing • The CAN be rehabilitated • But: Do we succeed? Visibility and Usability of Assistive Hearing Devices for Persons with Visual Impairment Funding provided by 16 5/28/2014 Assistive Technology • “…an umbrella term for any device or system that allows individuals to perform tasks they would otherwise be unable to do, or increases the ease and safety with which tasks can be performed.” World Health Organization, 2002 Assistive Technology Devices (ATDs) • For older adults, utilization of ATDs is low • Hearing: – 1 in 4 eligible to use hearing aids do so – 1 in 7 use hearing assistive technologies • Vision: – 1 in 4 devices are abandoned – 1 in 4 users are dissatisfied with the devices they use • DSI: ??? Cushman et al., 1996; Edwards et a., 1998; Gitlin et al., 1993; Mann et al., 1993 17 5/28/2014 Assistive Technology • Assistive Devices are designed with ONE impairment in mind • Use and usability of Assistive Devices for Hearing Loss are likely compromised by the presence of Vision Loss – e.g. client cannot see buttons on hearing aid or cannot change batteries on a pocket talker Setting the time on a vibrating alarm clock 18 5/28/2014 Our Question • Can individuals with vision loss successfully use assistive hearing devices? • Hypotheses: • Minimal rehabilitation techniques improve success of use • Minimal rehabilitation techniques improve speed of use Study Participants • Control participants: n = 8 age 66‐87 • 38 Clients of the MMRC Day Centre – All have vision loss (mostly AMD) – All use some type of Assistive Devices • VI Only: n = 19 age 67‐95 • VI and HI: n = 19 age 60‐100 19 5/28/2014 Study Components • Montreal Cognitive Assessment (MoCA) in its Blind version (Wittich et al., JVIB, 2010) • Purdue Pegboard Test for manual dexterity • Qualitative Interview – client perspective Study Components • Functional tests – Assemble pocket talker – Use amplified telephone – Adjust daylight saving time on a talking clock 20 5/28/2014 Two Conditions Results ‐ MoCA PASS at 18+ Failure Rates Controls: 2/8 = 25% Visual Impairment: 9/19 = 47% Dual Impairment: 6/19 = 32% 42 21 5/28/2014 Minimal rehabilitation techniques improve success of use Minimal rehabilitation techniques reduces failure – Pocket Talker 22 5/28/2014 Minimal rehabilitation techniques reduces failure – Telephone Minimal rehabilitation techniques reduces failure – Talking Clock 23 5/28/2014 Minimal rehabilitation techniques improve speed of use – Pocket Talker Main effect of time: F(1, 42) = 11.11, p < .002, η = .21, Overall improvement with time Main effect of group: F(2, 42) = 85.00, p < .0001, η = .67, Controls are faster that VI/DSI Minimal rehabilitation techniques improve speed of use – Telephone Main effect of time: F(1, 42) = 7.89, p < .008, η = .16, Overall improvement with time Main effect of group: F(2, 42) = 160.71, p < .0001, η = .78, Controls are faster that VI/DSI 24 5/28/2014 Minimal rehabilitation techniques improve speed of use – Talking Clock Main effect of time: F(1, 42) = 22.11, p < .0001, η = .35, Overall improvement with time Main effect of group: F(2, 42) = 71.89, p < .0001, η = .63, Controls are faster that VI/DSI Our Question • Can individuals with vision loss successfully use assistive hearing devices? • Yes but there is room for improvement! • Hypotheses: • Minimal rehabilitation techniques improve success of use • Most likely • Minimal rehabilitation techniques improve speed of use • Most likely 25 5/28/2014 Some Extras • Does it matter if you have experience with the device? – Talking Clock NO mistakes either time Open Questions • Is the improvement of speed due to repetition, intervention or both? • How about other assistive hearing technologies? • But: Do our clients actually WANT to use these devices? 26 5/28/2014 Does public discourse in the media shape our perception of deafblindness, aging, and assistive devices? Funding provided by Introduction • Dual sensory loss has important implications for: • • • • • Social-emotional well-being Cognitive function Independence in daily activities Health and mortality Communication Saunders & Echt, 2007; Schneider, et al.,2011 27 5/28/2014 Assistive Technology • The Good: – Devices can improve functional ability and independence • The Bad: – Abandonment rates are high (30-70%) – The stigma of using, or being seen with the device(s) Gittlin, 1995; Philips & Zhao, 1993; Mann et al., 2002 From a social point of view… • Stigma is “the possession of, or belief that one possesses, some attribute or characteristic that conveys a social identity that is devalued in a particular social context” (Crocker, Major, & Steele, 1998) 28 5/28/2014 Ageist Stereotypes • Weak, frail, and disabled • Greater social value given to people who do not have impairments • Make older adults feel unwelcome, marginalized, invisible Canadian Network for the prevention of Elder Abuse Research Question Does public discourse contribute to the creation and maintenance of ageist stereotypes about dual sensory loss and assistive technology devices? If so, how? 29 5/28/2014 Critical Discourse Analysis • Discourses shape identity possibilities through constructing “new categories of people and new ways for people to be” • Newspapers …are the most commonly accessed type of print media by Canadians, particularly middle-aged and older persons. Rudman & Molke, 2009 Methods Media portion: English component • Searched for articles from The Globe and Mail using Factiva database for June 2009‐2013 – Using various search strings related to aging, vision, hearing, technology, assistive devices, for example: • seniors and technology • old and disabled • blind and deaf • Discourse analysis in progress to code and examine themes in these articles that are relevant to the research question 30 5/28/2014 Discourse Analysis ARTICLE INCLUSION CRITERIA: • MUST include stereotype(s), e.g. ageism, (dis)ableism. • The stereotype MUST be related to a health condition. • Mention health condition, e.g., macular degeneration • Optional content: – Aging (include if stereotypes might effect perceptions about aging) – Assistive technology Discourse Analysis • Coding of selected text by: 1. 2. 3. 4. Health condition (i.e., vision, hearing, dual sensory loss) Context (i.e., employment, policy, relationships) Stereotype (i.e., inevitable decline, incompetent) Consequences of stereotype (if discussed) • Isolation, discrimination, advocacy • Coding unit = sentence – Exception offensive terminology can be coded on its own (For example: “mental defectives”) 31 5/28/2014 Results • Out of 8951 articles, 168 were found to be directly or indirectly related to the research question • After examining all articles, 68 included for final discourse analysis Health condition: Hearing loss Context: Asking for help – Air Travel Stereotype: They’re all the same “Sometimes, that means I'll be met at my destination by a smiling woman holding a sign with my name on it – and a wheelchair. I've yet to figure out how my deafness renders me unable to walk. ” The Globe and Mail, Beverly Biderman, The Globe Life Column, L8, 12/07/2012 32 5/28/2014 Health condition: Hearing loss Context: Asking for help – Hotel accommodation Stereotype: They’re all the same “when I ask for this visible alarm, I’m often put in a special all purpose “handicapped room” complete with a gigantic bathroom with low toilet, grab bars everywhere, large print signage and extra wide doorways. One size fits all – deaf, mobility impaired, blind whatever” The Globe and Mail, Beverly Biderman, The Globe Life Column, L8, 12/07/2012 Health Condition: Vision loss (retinitis pigmentosa) Context: social support (‐); and assistive technology Consequences of stigma “As her vision faded, Ms. Burke started using a white cane, something that left her friends embarrassed. The bullying began, invitations dried up and some people told her to kill herself. She got a guide dog, hoping it would draw people in, where the cane had driven them away.” (The Globe and Mail, Sunny Dhillon, National News: Folio Bullying, A12, 13/10/2012) 33 5/28/2014 The Golden Quote: ...my golden age has slowly turned into a Band‐Aid age...The magnifying glass became quite useful (Band‐Aid 1)... The eyesight and the hearing diminished…The cataract was removed (No. 6)...So I gave myself the push and asked for Band‐Aid 7, a hearing aid. People tell me I look well rested and have not changed a bit. I don't tell friends about the Band‐Aids I use, though.” The Globe and Mail, Lelia Sponsel, Globe Life, L6, 4/6/2010 Conclusions • Little found encompassing all aspects of research question • Older adults recognize the benefits of assistive technology but seem to be reluctant to disclose the use of these devices • Negative discourse in the media may be contributing to societal attitudes associated with assistive devices • Public education could reduce negative attitudes and increase the use of assistive technologies 34 5/28/2014 We fight an uphill battle • • • • Dual rehabilitation services still rare If available, people are not aware If aware, people do not want to access If access, – Devices are abandoned – Clients are embarrassed to use them in public But: Change is possible • The story of the white cane • The low vision technician and reversed psychology... 35 5/28/2014 Parallel Projects • Media portion: French component – Analysis with same search strings using articles from La Presse • Website portion (English and French) – Analysis of websites designed to inform persons with acquired deafblindness Three Things to Remember • The large majority of persons receiving rehabilitation for vision and hearing loss are over 65 • Even minimal rehabilitation interventions can help these individuals when using devices • Be a role model ! – Help us overcome the stigma attached to assistive devices. 36 5/28/2014 Thank you ‐ Merci • Collaborators – Kenneth Southall (IRD) – Martine Lagacé (U Ottawa) – Jean‐Pierre Gagné (U Montréal) • Post‐doc – Sarah Fraser (McGill) • Research Assistants – Don Watanabe (MMRC) – Geneviève Groulx (MMRC) – Alexandre Beaulieu (MMRC) – Eve‐Julie Rioux (IRD) – Johanne St.‐Gelais (IRD) – Martine Gendron (IRD) – Jonathan Jarry (MMRC) – Rollande Grondin (INLB) – Les employées du service des Archives de l'INLB 37