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

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• 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.

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