Post on 31-May-2020
PART 1: MENTAL INCAPACITY DEFINED
MENTAL INCAPACITY: DO WE HAVE THE WILL TO CARE FOR THOSE WHO ARE VULNERABLE?
(ii) Language as a window into mental processes: Improving understanding about persons living with dementiaPresented by Dr. Leela KoranDepartment of English Language, Lecturer and Researcher, Faculty of Languages & Linguistics, University of Malaya
LANGUAGE AS A WINDOW INTO MENTAL PROCESSES: IMPROVING
UNDERSTANDING ABOUT PERSONS LIVING WITH DEMENTIA
(PLWDS)
• Introduction & Background
• Diagnosis and Assessments – the how & what
• Challenges for PLWDs in Malaysia
• Recent Researches & Implications
• Theoretical Background
• The Present Study – Methodology & Findings
• Conclusion, Implications & Future directions
Leela Koran (PhD)
FACULTY OF LANGUAGES AND LINGUISTICS
UNIVERSITY OF MALAYA
“Alzheimer's Disease is the most common form of dementia …
= NOT a part of normal aging, but … progressive loss of brain nerve cells.”
• AFFECTS COGNITION = most noticeable in everyday interactions
& COMMUNICATION
A person living with dementia mayalso display:
• confusion• problems at work & routine activities
e.g. paying bills or taking care of their house• personality changes• depression• problems following simple directions• trouble telling others what they want and need• trouble eating and swallowing
https://www.asha.org/public/speech/disorders/dementia/http://www.adfm.org.my/Home/about-alzheimer-s/warning-signs
LANGUAGE
IMPAIRMENT /
COGNITIVE
DECLINE?
INTRODUCTION/ BACKGROUND –Definition of terms
DIAGNOSIS & ASSESSMENTS – how it is done and what tools are available?
@ Memory Clinics & Geriatric Units
- MOCA MMSE
https://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/GetPdf.cgi?id=phd001525.1
LANGUAGE
= key component,
-to gauge degree of
impairment for
spectrum of
progressive condition
TRANSLATIONS &
ADAPTED VERSIONS
-developed and standardized
for different populations
Studies on MOCA vs MMSEThe Montreal Cognitive Assessment
(MoCA) is superior to the Mini-Mental State
Examination (MMSE) for the detection of
vascular cognitive impairment after
Dong et al. (2010)
EnglishMalay EnglishChinese*
Malay
English
Indian*
Malay
Overlap in circles = contact phenomena, LINGUSITIC RESOURCES
Most common = Malay- English bilinguals
Factors that affect L2 proficiency:
Age, Education / Exposure ( urban-rural
population, workplace), etc.
SOCIAL SETTINGS IN MALAYSIA – LINGUISTIC DIVERSITY & BILINGUALISM
CHALLENGES FOR PLWDs in Malaysia
• ECONOMIC ISSUES in a developing nation
- responsibilities of family caregivers & other members
• CULTURAL DIVERSITY
- lack of understanding, STIGMA & the extended social network
• LINGUSTIC DIVERSITY
- assessments in all the languages spoken in the community?
- What about bilinguals?
• URBAN-RURAL DIVIDE
- accessibility / awareness / SSE levels /alternatives?
• PLWDs are individuals living with the condition that affects their cognitive &
language abilities.
• Every experience of dementia is different – involves progressive although rarely linear loss of cognitive functionality = INDIVIDUAL variations
RECENT RESEARCHES & IMPLICATIONS
2016 2017
Conversational assessment in memory
clinic encounters: interactional profiling for
differentiating dementia from functional
memory disorders Danielle Jones*, Paul Drew, Chris Elsey, Daniel
Blackburn, Sarah Wakefield, Kirsty Harkness, Markus
Reuber
RECENT RESEARCHES & IMPLICATIONS
2019 2017
CONVERSATION ANALYSIS
NEUROIMAGING RESEARCH
THEORETICAL BACKGROUND
Linguistic Profiling & Mapping Ethnography
&
CA
Bilingual Interactions
& Resources
Applications = Intervention
Applications = Intervention
MappingStructural decline &functionality
GAP : Bilingual PLWDs & their caregivers - for assessments to give us insights
about the PLWDs’ mental capacity (to make decisions?), we need to include
CONVERSATIONS in the protocol & for this to be possible, we need to explore
EFFECTIVE PERSON CENTRED COMMUNICATION in culturally & linguistically
diverse populations.
APHASIA (~ STROKE) DEMENTIA
Koran (2013 -present)
THE PRESENT STUDY – methodology
2. to identify potentials
for LINGUA-
CULTURAL
ADAPTATION of
existing PERSON-
CENTRED
COMMUNICATION
RESOURCES
Ethnographic
Observations
ADFM
Day Care
Centre
ADFM
Community
Centre
Activities
involving PLWDs
@
Caregiver Training
Workshops
Caregiver Sharing
Sessions
Awareness talks
& other activities
Informal
discussions &
interactions
Interviews Professional carers
Family caregivers
QUALTITATIVE RESEARCH DESIGN
ITERATIVE / CYCLIC PROCESS – in Phases
PHASE 1
PHASE 2
1. to gain insights about
CHALLENGES AND
COMMUNICATION
NEEDS in care provision
for PLWDs
OBJECTIVES
The Present study - FINDINGS
Observations revealed that effective
communication = central to PLWDs’participation.
A recurrent theme during the caregiver training
workshops and sharing sessions =
the question of how to communicate effectively
with a PLWD in the various stages of cognitive
decline.
PHASE 1
Conceptual model underpinning DemTalk- overview
12
9
______Nine
REVISED VERSION
FINDINGS : PHASE 2 : A MODEL & RESOURCES
Young et al, 2011a, 2016; Tullo et al 2016
FINDINGS
PHASE 2
FINDINGS
PHASE 2
The participants’ response to interview question on the
DEMTALK materials revealed a similar perspective : the
beliefs and principles + components of good
communication practices = RELEVANT to the culturally
diverse MALAYSIAN population
All the participants agreed that DEMTALK IS A USEFUL
GUIDE for their interactions with PLWDs.
FINDINGS
PHASE 2
The family caregivers, revealed a somewhat differing perspectives among the
participants who come from culturally and linguistically diverse society and have
different life experiences.
“um, i thi- i think the bit that might be the local part would be perhaps, mm, in an Asian context you
may feel more, more, uhm, responsibility towards looking after them when they're older compared to a
western setting whereby uhh, they're much more independent and they live on their own much longer,
uh,and uhm, so, so in that sense you feel the responsibility to looking after them because you kinda
respect their role as them being your parent, uhm, and not, and, and, and, so what I’m trying to say is,
so you you you you accept that, you so i mean y-you look after them because you respect them …
…but not to say that the western culture you, y'know, you don’t respect them but its different because
there there’s more independence, uhm, whereas i think here its like you know its kinda accepted
when they get a certain age you you you you care for them, to a certain extent y- you know you, er, its
accepted. uhm, unless they opt, or they behave in such way where they want to be independent.” (Interview data : Participant code : AZ , M, F, P)
“ I tend to let him be … it is not that I don’t care but why impose on him - i mean he is having this, why stress him… As long as it is not causing any harm. “
(Interview data : Participant code : SC , C, F, P)
The professional carers confirmed that although these values are norms in the local culture, a timely reminder e.g. “to respect the elders” is often necessary.
FINDINGS
PHASE 3
Focus group discussions at a workshop
on Communicating with Older Persons in
Clinical Practice and Research at the
Faculty of Medicine in University of
Malaya
- participants from various backgrounds
confirmed relevance of the core Beliefs
and Principles to guide communication
with PLWDs – perspectives of family
member’s & professional trainees.
- Highlighted variations in
INTERGENERATIONAL interactions
involving PLWDs
Public Forum at ADFM’s
Community Centre (WAM)
provided opportunities to document
“public” opinion about dealing with
Dementia
-participants revealed that Care &
Communication/ Participation of
PLWDs = requires societal support
- not just the immediate family
members & caregiver burn-out is
another concern
Also highlighted issues in
INTERGENERATIONAL
interactions involving PLWDs
PHASE 4
FROM FINDINGS TO APPLICATION
Based on the Phase 1 - 4 findings, lingua-cultural adaptation of
DemTalk into Malay language i.e. the most common language of
Malaysian bilinguals was initiated first.
Principles of translation e.g. equivalency was been adopted in this
first attempt.
( notes on translation)
- some linguistic elements i.e. expressions & lexical items (concepts)
do not lend themselves to translation.
FROM FINDINGS TO APPLICATION
Procedures of back-translation helped to identify elements that did
not lead us back to the original form.
- these also give us additional insights into the phenomenon of
language variety experienced in the context of societal
multilingualism
→ English language version for Malaysian Users
(link to the beta version of DemTalk _my.org )
This was followed by the Tamil version & the Mandarin version
(under construction)
FROM FINDINGS TO APPLICATION
Phase 5: Caregiver talks at AACC/ Seminar presentations
– introducing elements of DemTalk - getting feedback for continuous development
(ongoing)
GOOD COMMUNICATION PRACTICE What, Why & How?
1. Conversation Approach, Listening & Speaking
2. Non-verbal communication Appear relaxed, smile, be visible, engaging
3. Environment Reduce distraction/ interruptions,
4. Anxiety reductionwait, explain, don’t underestimateallow for space
5. Putting yourself in their shoesThink about what you know about them, try to feel what they mean,
6. Understanding behaviors Don’t judge, try to understand
7. Sense of self Respect, recognize the individual
8. Checking UnderstandingWork towards meaning together, Ask if you have understood correctly
9. Keeping yourself wellTake breaks, talk to others,Admit difficulties
FROM FINDINGS TO APPLICATION
CONCLUSION , IMPLICATIONS & FUTURE DIRECTIONS
The present attempt indicates that the beliefs and principals + components of good
communication practices = RELEVANT across the different cultures.
Implications –potentials for developing training modules – e.g.
intergeneration volunteer programmes/ geriatric nurses, etc.
- In both urban and rural areas – as prevalence of Dementia is
expected to add to the socio-economic burden of care provision
+ PSYCHOSOCIAL IMPLICATIONS.
- expected to make inclusive participation of PLWDs in social
activities & provide avenues to accurately gauge their mental
capacity to make decision pertaining to financial matters.
= the lingua-cultural adaptation of the
web-based person-centred communication toolkit
& can serve as resource materials for .
References
Acknowledgement
•the PARTICIPANTS
•Faculty of Languages and Linguistics
UNIVERSITY OF MALAYA
• Alzheimer’s Disease International. (2010). World Alzheimer Report: The Global Economic Impact of Dementia. Available online at
http://www.alz.co.uk/research/world-report.
• Alzheimer’s Disease International. (2012). World Alzheimer Report: Overcoming the Stigma of Dementia. Available online at http://www.alz.co.uk/research/world-
report.
• Alzheimer’s Disease International. (2018). World Alzheimer Report. Available online at http://www.alz.co.uk/research/world-report.
• Bögels, S. & Levinson, S.C (2017). The Brain Behind the Response: Insights Into Turn-taking in Conversation From Neuroimaging. Research on Language and
Social Interaction. 50(1): 71-89.
• Brooker, D. (2004). What is person-centred care in dementia? Reviews in Clinical Gerontology, 13, 215-22.
• Giles, H. & Ogay, T. (2006). Communication accommodation theory. In Whaley, B.B. and Samter, W. (eds), Explaining Communication. Contemporary Theories
and Exemplars. Lawrence Erlbaum, Mahwah, New Jersey, 293-311.
• Jones, D., Drew, P., Elsey, C., Blackburn, D., Wakefield, S., Harkness, K., & Reuber, M. (2015) ] Conversational assessment in memory clinic encounters:
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• Jones, D., Wilkinson, R., Jackson, C., & Drew, P. (2019). Variation and Interactional Non-Standardization in Neuropsychological Tests: The Case of the
Addenbrooke’s Cognitive Examination. Qualitative health research, https://www.doi.org/10.1177/1049732319873052
• Koran, L. (2015). Aphasia in a linguistically diverse population: resources for turn construction and interactional adaptations of Malaysian adults. Doctoral thesis,
UCL (University College London).
• Mirheidari, B., Blackburn, D., Harkness, K., Walker, T., Venneri, A., Reuber, M., & Christensen, H. (2017). Toward the automation of diagnostic conversation
analysis in patients with memory complaints. Journal of Alzheimer's Disease, 58(2), 373-387.
• Nikmat, A.W., G. Hawthorne & S.H. Al-Mashoor. (2011). Dementia in Malaysia: Issues and challenges. ASEAN Journal of Psychiatry, 12(1), 1–7.</jrn>
• Wilkinson, R., Gower, M., Beeke, S. & Maxim, J. (2007). Adapting to conversation as a language-impaired speaker: Aphasic turn construction over time.
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• Young, T., Manthorpe, C., Howells , D. & Tullo, E., 2011, Developing a carer communication intervention to support personhood and quality of life in dementia.
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