Persons with deafblindness living with Charles Bonnet Syndrome

A
PERSONS WITH
DEAFBLINDNESS LIVING WITH
CHARLES BONNET SYNDROME
BY LINE HOVLAND
17th Deafblind International World Conference 2019
Sharing the knowledge to ACT
CHARLES BONNET SYNDROME
CBS has been defined as the occurrence of recurrent or
persistent simple or complex hallucinations in people with
good cognitive abilities, without altered consciousness,
cognitive or psychiatric disorders, sleep disturbances, but
with ophthalmic damage (Menon, Rahman, Menon & Dutton
2003; Pang, 2016)
CHARLES BONNET SYNDROME
• Simple and complex
• Prevalence
RISK FACTORS
• Hearing loss
• Social and physical isolation
• Fatigue
• Stress
• Dim illumination or bright light
BACKGROUND
A young woman with Usher II experiencing visual
hallucinations so disturbing making her unable to interact
with others as long as the hallucinations are there. She had
never told anyone about it, not even to her spouse.
AIM OF THE STUDY
The study investigated how CBS is experienced and
understood by people with deafblindness, and how
CBS influences social interaction and activities of
daily life.
FOCUSGROUP INTERVIEW
• 4 men and 2 women
• Age mid-thirties to mid-seventies, mean-age 59 years
• Four out of six lives solitary, one is employed, the others
does either receive disability benefit or are retiered
• All have different diagnoses causing deafblindness
THE EXPERIENCES WITH CBS
• From not affected, to curious, to severely affected
• Forgetful, irritated, scared, exhausted, unfocused,
disoriented
• Hallucinations increase in incidence throughout the day,
and are more noticeable in the evening
• Many years of experiences with CBS
• Another stone for the burden
NOT KNOWING WHAT IT IS
Knowledge
Living with a secret
TO KNOW OR NOT TO KNOW
«In the beginning, I spent a lot of energy being
annoyed because of all the stuff I thought was there,
but wasn’t there. And now as I have learned a little
bit about it, and gotten to know that others are
experiencing the same, I can relax a lot more. Now
it is just, there».
CBS, COMMUNICATION AND SOCIAL
LIFE
• CBS results in increased demand on concentration
• Breakdown in communications
• Sosial withdrawal
CBS AND COMMUNICATION
«Sometimes I notice that I fall out of the conversation, when
I listen to others, and suddenly I see a movement, an
hallucination, I get curious, what’s that? And then I lose parts
of the conversation.»
CBS AND COMMUNICATION
«It depends a bit on what state I am in. Because, if I am tired
and have a lot of hallucinations, then it can be difficult to find
the right words. Often communication is affected by the
words you use, and misunderstandings can easily arise, and I
hear the wrong thing. I often feel exhausted, and then
communication problems and misunderstandings arise…».
CBS AND SOCIAL LIFE
«For instance, if I am supposed to go to the choir, I can be so
exhausted, unable to consentrate enough to even manage to
get there.We meet at the reharsal between 6 to 9pm, which
in fact is a very difficult time, often I am very tired, in the
worst cases I get dizzy and feel nauseous.»
CBS AND SOCIAL LIFE
“..when this started I almost didn’t want to be among
others. I made an effort to try and walk normally, so that
people won’t think I’m weird. I didn’t realize what it actually
was, but now I’m able to calm myself down, and as (X) said,
I’m able to let go of it, to let it all go and return to
normal…. ”
“..now I know I’m not alone, that others also experience this,
and that makes me feel safe. Safe because.. People around me
can’t possibly know what I may or may not suffer from. I
used to think that others could spot that something was off
about me.
That’s what I imagined, before I knew that others have the
same experience. So, they see me as I am, as a normal
person…”
CBS AND ACTIVITIES OF DAILY LIFE
• All activities of daily life can be affected
• Direct / indirect
• Need for strategies
CBS AND ADL
«It changes all the time, like now as we are sitting here. It’s
like small dots passing by, then larger figures can come into
picture, then they also pass. It only lasts for 2-3 seconds, then
the whole picture changes.And it is very tiring, and it takes a
lot of consentration. So when I have tasks to do, I easily
forget, going from one task to another, unable to coordinate.
And suddenly I run into furniture and walls, it happens
almost every day».
CBS AND ADL
«When I’m working in front of the computer screen, editing
something and have been working for several hours. I am
tired and the concentration is not the best any more, then
the hallucinations starts to appear. Suddenly I am not sure, is
that part white, black or red? Like, you can’t separate reality
from what is imagined».
CBS, ORIENTATION AND MOBILITY
• Never being rested in the morning, becoming
unconcentrated and tired, becoming disoriented, losing
direction and balance.
• Light adaption time is extended
• Reduced access to the spacious surroundings.This creates
a challenge of orienting both indoors and outdoors.
CBS, O&M
"... I was shoveling snow a few days ago, and to my horror I
realized that I had lost my direction.And I had a lot of
hallucinations and I was lost in thought and completely
forgot about myself, and I had meandered way down the
street. I was standing, shoveling snow at a neighbors driveway
and had completely lost my direction, I didn't know where I
was. "
CBS AND DEAFBLINDNESS
Social isolation – CBS and Deafblindness creates a
negative spiral
DEAFBLINDNESS + CBS + TINNITUS
Deafblindness is more than loss of hearing and
vision, 1 + 1 = 3
Hearing-impairement +Vision-impairement +
Tinnitus + CBS = ?
WHAT CAN BE DONE
• Information
• Optimize vision and hearing
• Reduce stress, social and physical isolation
• Interdiciplinary cooperation
CONCLUSION
• CBS affect accessability
• O&M
• ADL
• Communication
• Social life
IF YOU HAVE QUESTIONS
Please ask, now, in the break or on e-mail
Line.Hovland@eikholt.no
REFERENCES
• Bernardin, F., Schwan, R., Lalanne, L., Ligier, F.,Angioi-Duprez, K., Schwitzer,T. & Laprevote,V. (2017).
The role of the retina in visual hallucinations:A review of the literature and implications for psychosis.
Neuropsychologia, 99, 128-138. https://doi.org/10.1016/j.neuropsychologia.2017.03.002
• Boller, F., Birnbaum, D. S. & Caputi, N. (2017).Charles Bonnet Syndrome and Other Hallucinatory
Phenomena. Frontiers of Neurology and Neuroscience, 41, 117-124. https://doi.org/10.1159/000475702
• Cox,T. M. & ffytche, D. H. (2014). Negative outcome Charles Bonnet syndrome. British Journal of
Ophthalmology, 98(9), 1236-1239. https://doi.org/10.1136/bjophthalmol-2014-304920
• Dammeyer, J. (2014). Deafblindness:A review of the literature. Scandinavian Journal of Public Health,
42(7), 554-562. https://doi.org/10.1177/1403494814544399
• Dutton,G. (2003). Cognitive vision, its disorders and differential diagnosis in adults and children:
knowing where and what things are. Eye, 17(3),289-304. https://doi.org/10.1038/sj.eye.6700344
• Elflein, H., Rudy, M., Lorenz, K., Ponto,K., Scheurich,A. & Pitz, S. (2016). Charles Bonnet’s syndrome:
not only a condition of the elderly. Incorporating German Journal of Ophthalmology, 254(8), 1637-1642.
https://doi.org/10.1007/s00417-016-3387-x
• Geueke,A., Morley, M. G., Morley, K., Lorch,A., Jackson, M., Lambrou,A., … Oteng-Amoako,A. (2012).
Anxiety and Charles Bonnet Syndrome. Journal ofVisual impairment & Blindness, 106(3),145-153.
https://doi.org/http://dx.doi.org/10.1177/0145482X1210600303
• Gregory, R. L. (1997). Eye and Brain, the psychology of seeing. Princeton, New Jersey: Princeton
University Press.
REFERENCES
• Hersh, M.A. (2013a). Deafblind people, communication,independence, and isolation. The journal of
deaf studies and deaf education., 18(4),446-463. https://doi.org/10.1093/deafed/ent022
• Hersh, M.A. (2013b). Deafblind people, stigma and the use of communication and mobility assistive
devices. Technology & Disability, 25(4), 245-261.https://doi.org/10.3233/TAD-130394
• Högner, N. (2015). Psychological stress in people with dual sensory impairment through Usher
Syndrome type II. Journal ofVisual impairment & Blindness, 109(3),185-197.
https://doi.org/10.1177/0145482X1510900303
• Jaiswal,A.,Aldersey, H.,Wittich,W., Mirza, M. & Finlayson, M. (2018). Participation experiences of
people with deafblindness or dual sensory loss:A scoping review of global deafblind literature. PLoS
ONE, 13(9), 1-26. https://doi.org/https://doi.org/10.1371/journal.pone.0203772
• Johansson,A.-B. (2017). Se och hör mig
• Personer mer förvärvad dövblindhets erfarenheter av delaktighet, rehabilitering och medborgerligt liv
(Doktorgrads avhandling). Göteborgs universitet, Göteborg.
• Jurišić, D., Sesar, I., Ćavar, I., Sesar,A., Živković, M. & Ćurković, M. (2018).Hallucinatory experiences in
visually impaired individuals: Charles Bonnet syndrome - implications for research and clinical
practice. Psychiatria Danubina, 30(2), 122-128. https://doi.org/10.24869/psyd.2018.122
• Krog, N. H., Engdahl, B. & Tambs, K. (2010).The association between tinnitus and mental health in a
general population sample: Results from the HUNT Study. Journal of Psychosomatic Research, 69(3),
289-298. https://doi.org/10.1016/j.jpsychores.2010.03.008
REFERENCES
• Menon, G. J., Rahman, I., Menon, S. J. & Dutton, G. N. (2003). ComplexVisual Hallucinations in
theVisually Impaired:The Charles Bonnet Syndrome. Survey of Ophthalmology, 48(1), 58-72.
https://doi.org/10.1016/S0039-6257(02)00414-9
• Nair,A. G., Nair,A. G., Shah, B. R. & Gandhi, R.A. (2015). Seeing the unseen:Charles Bonnet
syndrome revisited. Psychogeriatrics, 15(3), 204-208. https://doi.org/10.1111/psyg.12091
• NKDB. (2016). Nordisk definisjon av døvblindhet. Hentet fra
http://www.dovblindhet.no/getfile.php/3892865.1320.aubfdaeqws/Nordisk+definisjon+av+d%C
3%B8vblindhet%2C+endelig+versjon.pdf
• NKDB. (2018). Om døvblindhet.Hentet 26.10.2018 fra
http://www.dovblindhet.no/doevblindhet.124832.no.html
• Pang, L. (2016). Hallucinations experienced by visually impaired: Charles Bonnet Syndrome.
Optometry andVision Science, 93(12), 1466-1478.
https://doi.org/10.1097/opx.0000000000000959
• Rönneberg, J. & Borg, E. (2001).A review and evaluation of research on the deaf-blind from
perceptual, communicative, social and rehabilitative perspectives.Scandinavian Audiology, 30(2),
67-77. https://doi.org/10.1080/010503901300112176
• Salvi, R. J. (2014). Underlying Mechanisms ofTinnitus:Review and Clinical Implications. Journal of
the American Academy of Audiology, 25(1), 5-22. https://doi.org/10.3766/jaaa.25.1.2
REFERENCES
• Santos-Bueso, E., Serrador-García, M., Sáenz-Francés, F. & García-Sánchez, J. (2016). Charles
Bonnet syndrome in patient with impaired visual field and good visual acuity. Neurología (English
Edition), 31(3), 208-209. https://doi.org/10.1016/j.nrleng.2013.12.023
• Thiago Cardoso,V., Luciene Chaves,F. & Paulo, C. (2014). Charles Bonnet syndrome:
characteristics of its visual hallucinations and differential diagnosis. Arquivos de Neuro-Psiquiatria,
72(5), 333-336. https://doi.org/10.1590/0004-282X20140015
• Turunen-Taheri, S., Skagerstrand, Å., Hellström, S. & Carlsson, P.-I. (2017). Patients with severe-
to-profound hearing impairment and simultaneous severe vision impairment: a quality-of-life
study. Acta Oto-Laryngologica, 137(3), 279-285.https://doi.org/10.1080/00016489.2016.1229025
• Vukicevic, M. & Fitzmaurice, K. (2008). Butterflies and black lacy patterns: the prevalence and
characteristics of Charles Bonnet hallucinations in an Australian population. Clinical &
Experimental Ophthalmology, 36(7), 659-665. https://doi.org/10.1111/j.1442-9071.2008.01814.x
• Wahlqvist, M. (2015). Health and People with Usher syndrome ( PhD dissertation). Örebro
University, http://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-46059.
• Wahlqvist, M., Moller, C., Moller, K. & Danermark, B. (2013). Physical and Psychological Health in
Persons with Deafblindness that Is due to Usher Syndrome Type II. Journal ofVisual impairment
& Blindness, 107(3), 207-220.
• Yacoub, R. & Ferrucci, S. (2011). Charles Bonnet syndrome. Optometry - Journal of the American
Optometric Association, 82(7), 421-427. https://doi.org/10.1016/j.optm.2010.11.014
1 of 30

Recommended

ChatGPT and the Future of Work - Clark Boyd by
ChatGPT and the Future of Work - Clark Boyd ChatGPT and the Future of Work - Clark Boyd
ChatGPT and the Future of Work - Clark Boyd Clark Boyd
23.4K views69 slides
Getting into the tech field. what next by
Getting into the tech field. what next Getting into the tech field. what next
Getting into the tech field. what next Tessa Mero
5.6K views22 slides
Google's Just Not That Into You: Understanding Core Updates & Search Intent by
Google's Just Not That Into You: Understanding Core Updates & Search IntentGoogle's Just Not That Into You: Understanding Core Updates & Search Intent
Google's Just Not That Into You: Understanding Core Updates & Search IntentLily Ray
6.3K views99 slides
How to have difficult conversations by
How to have difficult conversations How to have difficult conversations
How to have difficult conversations Rajiv Jayarajah, MAppComm, ACC
4.9K views19 slides
Introduction to Data Science by
Introduction to Data ScienceIntroduction to Data Science
Introduction to Data ScienceChristy Abraham Joy
82.2K views51 slides
Time Management & Productivity - Best Practices by
Time Management & Productivity -  Best PracticesTime Management & Productivity -  Best Practices
Time Management & Productivity - Best PracticesVit Horky
169.7K views42 slides

More Related Content

Recently uploaded

Low Vision Managment, Age Related Macular Degeneration ARMD by
Low Vision Managment, Age Related Macular Degeneration ARMDLow Vision Managment, Age Related Macular Degeneration ARMD
Low Vision Managment, Age Related Macular Degeneration ARMDmahendra singh
8 views31 slides
OBJECTIVES , CHARACTERISTICS , CONCEPT AND PHILOSOPHY OF NURSING.pptx by
OBJECTIVES , CHARACTERISTICS ,  CONCEPT AND PHILOSOPHY OF NURSING.pptxOBJECTIVES , CHARACTERISTICS ,  CONCEPT AND PHILOSOPHY OF NURSING.pptx
OBJECTIVES , CHARACTERISTICS , CONCEPT AND PHILOSOPHY OF NURSING.pptxKrishna Gandhi
10 views52 slides
FROSTBITE by
FROSTBITE FROSTBITE
FROSTBITE A Y
6 views13 slides
MEAUREMENT OF STATIC AND DYNAMIC POWER TEST.pptx by
MEAUREMENT OF STATIC AND DYNAMIC POWER TEST.pptxMEAUREMENT OF STATIC AND DYNAMIC POWER TEST.pptx
MEAUREMENT OF STATIC AND DYNAMIC POWER TEST.pptxRishab Mishra
44 views14 slides
NURSING IS AN ART AND SCIENCE.pptx by
NURSING IS AN ART AND SCIENCE.pptxNURSING IS AN ART AND SCIENCE.pptx
NURSING IS AN ART AND SCIENCE.pptxKrishna Gandhi
8 views7 slides
NURSING AS A PROFESSION, CHARACTERISTICS OF NURSE,NURSING PRINCIPLES.pptx by
NURSING AS A PROFESSION, CHARACTERISTICS OF NURSE,NURSING PRINCIPLES.pptxNURSING AS A PROFESSION, CHARACTERISTICS OF NURSE,NURSING PRINCIPLES.pptx
NURSING AS A PROFESSION, CHARACTERISTICS OF NURSE,NURSING PRINCIPLES.pptxKrishna Gandhi
41 views13 slides

Recently uploaded(20)

Low Vision Managment, Age Related Macular Degeneration ARMD by mahendra singh
Low Vision Managment, Age Related Macular Degeneration ARMDLow Vision Managment, Age Related Macular Degeneration ARMD
Low Vision Managment, Age Related Macular Degeneration ARMD
mahendra singh8 views
OBJECTIVES , CHARACTERISTICS , CONCEPT AND PHILOSOPHY OF NURSING.pptx by Krishna Gandhi
OBJECTIVES , CHARACTERISTICS ,  CONCEPT AND PHILOSOPHY OF NURSING.pptxOBJECTIVES , CHARACTERISTICS ,  CONCEPT AND PHILOSOPHY OF NURSING.pptx
OBJECTIVES , CHARACTERISTICS , CONCEPT AND PHILOSOPHY OF NURSING.pptx
Krishna Gandhi10 views
FROSTBITE by A Y
FROSTBITE FROSTBITE
FROSTBITE
A Y6 views
MEAUREMENT OF STATIC AND DYNAMIC POWER TEST.pptx by Rishab Mishra
MEAUREMENT OF STATIC AND DYNAMIC POWER TEST.pptxMEAUREMENT OF STATIC AND DYNAMIC POWER TEST.pptx
MEAUREMENT OF STATIC AND DYNAMIC POWER TEST.pptx
Rishab Mishra44 views
NURSING IS AN ART AND SCIENCE.pptx by Krishna Gandhi
NURSING IS AN ART AND SCIENCE.pptxNURSING IS AN ART AND SCIENCE.pptx
NURSING IS AN ART AND SCIENCE.pptx
Krishna Gandhi8 views
NURSING AS A PROFESSION, CHARACTERISTICS OF NURSE,NURSING PRINCIPLES.pptx by Krishna Gandhi
NURSING AS A PROFESSION, CHARACTERISTICS OF NURSE,NURSING PRINCIPLES.pptxNURSING AS A PROFESSION, CHARACTERISTICS OF NURSE,NURSING PRINCIPLES.pptx
NURSING AS A PROFESSION, CHARACTERISTICS OF NURSE,NURSING PRINCIPLES.pptx
Krishna Gandhi41 views
Compounding in hospitals.pptx by Komal Sathe
Compounding in hospitals.pptxCompounding in hospitals.pptx
Compounding in hospitals.pptx
Komal Sathe17 views
What's Next for OPPS: A Look at the 2024 Final Rule by Health Catalyst
What's Next for OPPS: A Look at the 2024 Final RuleWhat's Next for OPPS: A Look at the 2024 Final Rule
What's Next for OPPS: A Look at the 2024 Final Rule
Health Catalyst240 views
Whole Egg Powder Manufacturing Plant Project Report 2024 by AlinaEllis1
Whole Egg Powder Manufacturing Plant Project Report 2024Whole Egg Powder Manufacturing Plant Project Report 2024
Whole Egg Powder Manufacturing Plant Project Report 2024
AlinaEllis111 views
Presentation1 BLACKTOWN AND DRUITT HOSPITALS YOU ARE ALL SCUM.pptx by BraydenStoch2
Presentation1 BLACKTOWN AND DRUITT HOSPITALS YOU ARE ALL SCUM.pptxPresentation1 BLACKTOWN AND DRUITT HOSPITALS YOU ARE ALL SCUM.pptx
Presentation1 BLACKTOWN AND DRUITT HOSPITALS YOU ARE ALL SCUM.pptx
BraydenStoch210 views
vital signs...ILAYARAJA SAMPATH by S ILAYA RAJA
vital signs...ILAYARAJA SAMPATHvital signs...ILAYARAJA SAMPATH
vital signs...ILAYARAJA SAMPATH
S ILAYA RAJA329 views
2024 Medicare Physician Fee Schedule (MPFS) Final Rule Updates by Health Catalyst
2024 Medicare Physician Fee Schedule (MPFS) Final Rule Updates2024 Medicare Physician Fee Schedule (MPFS) Final Rule Updates
2024 Medicare Physician Fee Schedule (MPFS) Final Rule Updates
Health Catalyst109 views
Paper Napkin Manufacturing Plant Project Report 2024 by AlinaEllis1
Paper Napkin Manufacturing Plant Project Report 2024Paper Napkin Manufacturing Plant Project Report 2024
Paper Napkin Manufacturing Plant Project Report 2024
AlinaEllis15 views

Featured

Unlocking the Power of ChatGPT and AI in Testing - A Real-World Look, present... by
Unlocking the Power of ChatGPT and AI in Testing - A Real-World Look, present...Unlocking the Power of ChatGPT and AI in Testing - A Real-World Look, present...
Unlocking the Power of ChatGPT and AI in Testing - A Real-World Look, present...Applitools
55.5K views138 slides
12 Ways to Increase Your Influence at Work by
12 Ways to Increase Your Influence at Work12 Ways to Increase Your Influence at Work
12 Ways to Increase Your Influence at WorkGetSmarter
401.7K views64 slides
ChatGPT webinar slides by
ChatGPT webinar slidesChatGPT webinar slides
ChatGPT webinar slidesAlireza Esmikhani
30.3K views36 slides
Ride the Storm: Navigating Through Unstable Periods / Katerina Rudko (Belka G... by
Ride the Storm: Navigating Through Unstable Periods / Katerina Rudko (Belka G...Ride the Storm: Navigating Through Unstable Periods / Katerina Rudko (Belka G...
Ride the Storm: Navigating Through Unstable Periods / Katerina Rudko (Belka G...DevGAMM Conference
3.6K views12 slides
Barbie - Brand Strategy Presentation by
Barbie - Brand Strategy PresentationBarbie - Brand Strategy Presentation
Barbie - Brand Strategy PresentationErica Santiago
25.1K views46 slides

Featured(20)

Unlocking the Power of ChatGPT and AI in Testing - A Real-World Look, present... by Applitools
Unlocking the Power of ChatGPT and AI in Testing - A Real-World Look, present...Unlocking the Power of ChatGPT and AI in Testing - A Real-World Look, present...
Unlocking the Power of ChatGPT and AI in Testing - A Real-World Look, present...
Applitools55.5K views
12 Ways to Increase Your Influence at Work by GetSmarter
12 Ways to Increase Your Influence at Work12 Ways to Increase Your Influence at Work
12 Ways to Increase Your Influence at Work
GetSmarter401.7K views
Ride the Storm: Navigating Through Unstable Periods / Katerina Rudko (Belka G... by DevGAMM Conference
Ride the Storm: Navigating Through Unstable Periods / Katerina Rudko (Belka G...Ride the Storm: Navigating Through Unstable Periods / Katerina Rudko (Belka G...
Ride the Storm: Navigating Through Unstable Periods / Katerina Rudko (Belka G...
DevGAMM Conference3.6K views
Barbie - Brand Strategy Presentation by Erica Santiago
Barbie - Brand Strategy PresentationBarbie - Brand Strategy Presentation
Barbie - Brand Strategy Presentation
Erica Santiago25.1K views
Good Stuff Happens in 1:1 Meetings: Why you need them and how to do them well by Saba Software
Good Stuff Happens in 1:1 Meetings: Why you need them and how to do them wellGood Stuff Happens in 1:1 Meetings: Why you need them and how to do them well
Good Stuff Happens in 1:1 Meetings: Why you need them and how to do them well
Saba Software25.2K views
Introduction to C Programming Language by Simplilearn
Introduction to C Programming LanguageIntroduction to C Programming Language
Introduction to C Programming Language
Simplilearn8.4K views
The Pixar Way: 37 Quotes on Developing and Maintaining a Creative Company (fr... by Palo Alto Software
The Pixar Way: 37 Quotes on Developing and Maintaining a Creative Company (fr...The Pixar Way: 37 Quotes on Developing and Maintaining a Creative Company (fr...
The Pixar Way: 37 Quotes on Developing and Maintaining a Creative Company (fr...
Palo Alto Software88.4K views
9 Tips for a Work-free Vacation by Weekdone.com
9 Tips for a Work-free Vacation9 Tips for a Work-free Vacation
9 Tips for a Work-free Vacation
Weekdone.com7.2K views
How to Map Your Future by SlideShop.com
How to Map Your FutureHow to Map Your Future
How to Map Your Future
SlideShop.com275.1K views
Beyond Pride: Making Digital Marketing & SEO Authentically LGBTQ+ Inclusive -... by AccuraCast
Beyond Pride: Making Digital Marketing & SEO Authentically LGBTQ+ Inclusive -...Beyond Pride: Making Digital Marketing & SEO Authentically LGBTQ+ Inclusive -...
Beyond Pride: Making Digital Marketing & SEO Authentically LGBTQ+ Inclusive -...
AccuraCast3.4K views
Exploring ChatGPT for Effective Teaching and Learning.pptx by Stan Skrabut, Ed.D.
Exploring ChatGPT for Effective Teaching and Learning.pptxExploring ChatGPT for Effective Teaching and Learning.pptx
Exploring ChatGPT for Effective Teaching and Learning.pptx
Stan Skrabut, Ed.D.57.7K views
How to train your robot (with Deep Reinforcement Learning) by Lucas García, PhD
How to train your robot (with Deep Reinforcement Learning)How to train your robot (with Deep Reinforcement Learning)
How to train your robot (with Deep Reinforcement Learning)
Lucas García, PhD42.5K views
4 Strategies to Renew Your Career Passion by Daniel Goleman
4 Strategies to Renew Your Career Passion4 Strategies to Renew Your Career Passion
4 Strategies to Renew Your Career Passion
Daniel Goleman122K views
The Student's Guide to LinkedIn by LinkedIn
The Student's Guide to LinkedInThe Student's Guide to LinkedIn
The Student's Guide to LinkedIn
LinkedIn87.9K views
Different Roles in Machine Learning Career by Intellipaat
Different Roles in Machine Learning CareerDifferent Roles in Machine Learning Career
Different Roles in Machine Learning Career
Intellipaat12.4K views
Defining a Tech Project Vision in Eight Quick Steps pdf by TechSoup
Defining a Tech Project Vision in Eight Quick Steps pdfDefining a Tech Project Vision in Eight Quick Steps pdf
Defining a Tech Project Vision in Eight Quick Steps pdf
TechSoup 9.7K views

Persons with deafblindness living with Charles Bonnet Syndrome

  • 1. PERSONS WITH DEAFBLINDNESS LIVING WITH CHARLES BONNET SYNDROME BY LINE HOVLAND 17th Deafblind International World Conference 2019 Sharing the knowledge to ACT
  • 2. CHARLES BONNET SYNDROME CBS has been defined as the occurrence of recurrent or persistent simple or complex hallucinations in people with good cognitive abilities, without altered consciousness, cognitive or psychiatric disorders, sleep disturbances, but with ophthalmic damage (Menon, Rahman, Menon & Dutton 2003; Pang, 2016)
  • 3. CHARLES BONNET SYNDROME • Simple and complex • Prevalence
  • 4. RISK FACTORS • Hearing loss • Social and physical isolation • Fatigue • Stress • Dim illumination or bright light
  • 5. BACKGROUND A young woman with Usher II experiencing visual hallucinations so disturbing making her unable to interact with others as long as the hallucinations are there. She had never told anyone about it, not even to her spouse.
  • 6. AIM OF THE STUDY The study investigated how CBS is experienced and understood by people with deafblindness, and how CBS influences social interaction and activities of daily life.
  • 7. FOCUSGROUP INTERVIEW • 4 men and 2 women • Age mid-thirties to mid-seventies, mean-age 59 years • Four out of six lives solitary, one is employed, the others does either receive disability benefit or are retiered • All have different diagnoses causing deafblindness
  • 8. THE EXPERIENCES WITH CBS • From not affected, to curious, to severely affected • Forgetful, irritated, scared, exhausted, unfocused, disoriented • Hallucinations increase in incidence throughout the day, and are more noticeable in the evening • Many years of experiences with CBS • Another stone for the burden
  • 9. NOT KNOWING WHAT IT IS Knowledge Living with a secret
  • 10. TO KNOW OR NOT TO KNOW «In the beginning, I spent a lot of energy being annoyed because of all the stuff I thought was there, but wasn’t there. And now as I have learned a little bit about it, and gotten to know that others are experiencing the same, I can relax a lot more. Now it is just, there».
  • 11. CBS, COMMUNICATION AND SOCIAL LIFE • CBS results in increased demand on concentration • Breakdown in communications • Sosial withdrawal
  • 12. CBS AND COMMUNICATION «Sometimes I notice that I fall out of the conversation, when I listen to others, and suddenly I see a movement, an hallucination, I get curious, what’s that? And then I lose parts of the conversation.»
  • 13. CBS AND COMMUNICATION «It depends a bit on what state I am in. Because, if I am tired and have a lot of hallucinations, then it can be difficult to find the right words. Often communication is affected by the words you use, and misunderstandings can easily arise, and I hear the wrong thing. I often feel exhausted, and then communication problems and misunderstandings arise…».
  • 14. CBS AND SOCIAL LIFE «For instance, if I am supposed to go to the choir, I can be so exhausted, unable to consentrate enough to even manage to get there.We meet at the reharsal between 6 to 9pm, which in fact is a very difficult time, often I am very tired, in the worst cases I get dizzy and feel nauseous.»
  • 15. CBS AND SOCIAL LIFE “..when this started I almost didn’t want to be among others. I made an effort to try and walk normally, so that people won’t think I’m weird. I didn’t realize what it actually was, but now I’m able to calm myself down, and as (X) said, I’m able to let go of it, to let it all go and return to normal…. ”
  • 16. “..now I know I’m not alone, that others also experience this, and that makes me feel safe. Safe because.. People around me can’t possibly know what I may or may not suffer from. I used to think that others could spot that something was off about me. That’s what I imagined, before I knew that others have the same experience. So, they see me as I am, as a normal person…”
  • 17. CBS AND ACTIVITIES OF DAILY LIFE • All activities of daily life can be affected • Direct / indirect • Need for strategies
  • 18. CBS AND ADL «It changes all the time, like now as we are sitting here. It’s like small dots passing by, then larger figures can come into picture, then they also pass. It only lasts for 2-3 seconds, then the whole picture changes.And it is very tiring, and it takes a lot of consentration. So when I have tasks to do, I easily forget, going from one task to another, unable to coordinate. And suddenly I run into furniture and walls, it happens almost every day».
  • 19. CBS AND ADL «When I’m working in front of the computer screen, editing something and have been working for several hours. I am tired and the concentration is not the best any more, then the hallucinations starts to appear. Suddenly I am not sure, is that part white, black or red? Like, you can’t separate reality from what is imagined».
  • 20. CBS, ORIENTATION AND MOBILITY • Never being rested in the morning, becoming unconcentrated and tired, becoming disoriented, losing direction and balance. • Light adaption time is extended • Reduced access to the spacious surroundings.This creates a challenge of orienting both indoors and outdoors.
  • 21. CBS, O&M "... I was shoveling snow a few days ago, and to my horror I realized that I had lost my direction.And I had a lot of hallucinations and I was lost in thought and completely forgot about myself, and I had meandered way down the street. I was standing, shoveling snow at a neighbors driveway and had completely lost my direction, I didn't know where I was. "
  • 22. CBS AND DEAFBLINDNESS Social isolation – CBS and Deafblindness creates a negative spiral
  • 23. DEAFBLINDNESS + CBS + TINNITUS Deafblindness is more than loss of hearing and vision, 1 + 1 = 3 Hearing-impairement +Vision-impairement + Tinnitus + CBS = ?
  • 24. WHAT CAN BE DONE • Information • Optimize vision and hearing • Reduce stress, social and physical isolation • Interdiciplinary cooperation
  • 25. CONCLUSION • CBS affect accessability • O&M • ADL • Communication • Social life
  • 26. IF YOU HAVE QUESTIONS Please ask, now, in the break or on e-mail Line.Hovland@eikholt.no
  • 27. REFERENCES • Bernardin, F., Schwan, R., Lalanne, L., Ligier, F.,Angioi-Duprez, K., Schwitzer,T. & Laprevote,V. (2017). The role of the retina in visual hallucinations:A review of the literature and implications for psychosis. Neuropsychologia, 99, 128-138. https://doi.org/10.1016/j.neuropsychologia.2017.03.002 • Boller, F., Birnbaum, D. S. & Caputi, N. (2017).Charles Bonnet Syndrome and Other Hallucinatory Phenomena. Frontiers of Neurology and Neuroscience, 41, 117-124. https://doi.org/10.1159/000475702 • Cox,T. M. & ffytche, D. H. (2014). Negative outcome Charles Bonnet syndrome. British Journal of Ophthalmology, 98(9), 1236-1239. https://doi.org/10.1136/bjophthalmol-2014-304920 • Dammeyer, J. (2014). Deafblindness:A review of the literature. Scandinavian Journal of Public Health, 42(7), 554-562. https://doi.org/10.1177/1403494814544399 • Dutton,G. (2003). Cognitive vision, its disorders and differential diagnosis in adults and children: knowing where and what things are. Eye, 17(3),289-304. https://doi.org/10.1038/sj.eye.6700344 • Elflein, H., Rudy, M., Lorenz, K., Ponto,K., Scheurich,A. & Pitz, S. (2016). Charles Bonnet’s syndrome: not only a condition of the elderly. Incorporating German Journal of Ophthalmology, 254(8), 1637-1642. https://doi.org/10.1007/s00417-016-3387-x • Geueke,A., Morley, M. G., Morley, K., Lorch,A., Jackson, M., Lambrou,A., … Oteng-Amoako,A. (2012). Anxiety and Charles Bonnet Syndrome. Journal ofVisual impairment & Blindness, 106(3),145-153. https://doi.org/http://dx.doi.org/10.1177/0145482X1210600303 • Gregory, R. L. (1997). Eye and Brain, the psychology of seeing. Princeton, New Jersey: Princeton University Press.
  • 28. REFERENCES • Hersh, M.A. (2013a). Deafblind people, communication,independence, and isolation. The journal of deaf studies and deaf education., 18(4),446-463. https://doi.org/10.1093/deafed/ent022 • Hersh, M.A. (2013b). Deafblind people, stigma and the use of communication and mobility assistive devices. Technology & Disability, 25(4), 245-261.https://doi.org/10.3233/TAD-130394 • Högner, N. (2015). Psychological stress in people with dual sensory impairment through Usher Syndrome type II. Journal ofVisual impairment & Blindness, 109(3),185-197. https://doi.org/10.1177/0145482X1510900303 • Jaiswal,A.,Aldersey, H.,Wittich,W., Mirza, M. & Finlayson, M. (2018). Participation experiences of people with deafblindness or dual sensory loss:A scoping review of global deafblind literature. PLoS ONE, 13(9), 1-26. https://doi.org/https://doi.org/10.1371/journal.pone.0203772 • Johansson,A.-B. (2017). Se och hör mig • Personer mer förvärvad dövblindhets erfarenheter av delaktighet, rehabilitering och medborgerligt liv (Doktorgrads avhandling). Göteborgs universitet, Göteborg. • Jurišić, D., Sesar, I., Ćavar, I., Sesar,A., Živković, M. & Ćurković, M. (2018).Hallucinatory experiences in visually impaired individuals: Charles Bonnet syndrome - implications for research and clinical practice. Psychiatria Danubina, 30(2), 122-128. https://doi.org/10.24869/psyd.2018.122 • Krog, N. H., Engdahl, B. & Tambs, K. (2010).The association between tinnitus and mental health in a general population sample: Results from the HUNT Study. Journal of Psychosomatic Research, 69(3), 289-298. https://doi.org/10.1016/j.jpsychores.2010.03.008
  • 29. REFERENCES • Menon, G. J., Rahman, I., Menon, S. J. & Dutton, G. N. (2003). ComplexVisual Hallucinations in theVisually Impaired:The Charles Bonnet Syndrome. Survey of Ophthalmology, 48(1), 58-72. https://doi.org/10.1016/S0039-6257(02)00414-9 • Nair,A. G., Nair,A. G., Shah, B. R. & Gandhi, R.A. (2015). Seeing the unseen:Charles Bonnet syndrome revisited. Psychogeriatrics, 15(3), 204-208. https://doi.org/10.1111/psyg.12091 • NKDB. (2016). Nordisk definisjon av døvblindhet. Hentet fra http://www.dovblindhet.no/getfile.php/3892865.1320.aubfdaeqws/Nordisk+definisjon+av+d%C 3%B8vblindhet%2C+endelig+versjon.pdf • NKDB. (2018). Om døvblindhet.Hentet 26.10.2018 fra http://www.dovblindhet.no/doevblindhet.124832.no.html • Pang, L. (2016). Hallucinations experienced by visually impaired: Charles Bonnet Syndrome. Optometry andVision Science, 93(12), 1466-1478. https://doi.org/10.1097/opx.0000000000000959 • Rönneberg, J. & Borg, E. (2001).A review and evaluation of research on the deaf-blind from perceptual, communicative, social and rehabilitative perspectives.Scandinavian Audiology, 30(2), 67-77. https://doi.org/10.1080/010503901300112176 • Salvi, R. J. (2014). Underlying Mechanisms ofTinnitus:Review and Clinical Implications. Journal of the American Academy of Audiology, 25(1), 5-22. https://doi.org/10.3766/jaaa.25.1.2
  • 30. REFERENCES • Santos-Bueso, E., Serrador-García, M., Sáenz-Francés, F. & García-Sánchez, J. (2016). Charles Bonnet syndrome in patient with impaired visual field and good visual acuity. Neurología (English Edition), 31(3), 208-209. https://doi.org/10.1016/j.nrleng.2013.12.023 • Thiago Cardoso,V., Luciene Chaves,F. & Paulo, C. (2014). Charles Bonnet syndrome: characteristics of its visual hallucinations and differential diagnosis. Arquivos de Neuro-Psiquiatria, 72(5), 333-336. https://doi.org/10.1590/0004-282X20140015 • Turunen-Taheri, S., Skagerstrand, Å., Hellström, S. & Carlsson, P.-I. (2017). Patients with severe- to-profound hearing impairment and simultaneous severe vision impairment: a quality-of-life study. Acta Oto-Laryngologica, 137(3), 279-285.https://doi.org/10.1080/00016489.2016.1229025 • Vukicevic, M. & Fitzmaurice, K. (2008). Butterflies and black lacy patterns: the prevalence and characteristics of Charles Bonnet hallucinations in an Australian population. Clinical & Experimental Ophthalmology, 36(7), 659-665. https://doi.org/10.1111/j.1442-9071.2008.01814.x • Wahlqvist, M. (2015). Health and People with Usher syndrome ( PhD dissertation). Örebro University, http://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-46059. • Wahlqvist, M., Moller, C., Moller, K. & Danermark, B. (2013). Physical and Psychological Health in Persons with Deafblindness that Is due to Usher Syndrome Type II. Journal ofVisual impairment & Blindness, 107(3), 207-220. • Yacoub, R. & Ferrucci, S. (2011). Charles Bonnet syndrome. Optometry - Journal of the American Optometric Association, 82(7), 421-427. https://doi.org/10.1016/j.optm.2010.11.014