1. Living with Dementia in Aotearoa: the LiDiA study
Friday, 9 November 2018
Living with Dementia in Aotearoa: the LiDiA study
Dr Sarah Cullum
Senior Lecturer in Psychiatry
Consultant in Old Age Psychiatry (CMDHB)

2. Arriving in New Zealand
UK: Dementia Epidemiology (Cambridge)
Old Age Psychiatrist (Bristol)
2016: Middlemore hospital
Elderly immigrants (Pacific, China, India)
Cultural expectations and stigma
Using interpreters a lot
Younger presentation in Maori & Pacific?
Are there differences in prevalence of dementia in major NZ ethnic groups?
…2017: University of Auckland

3. Dementia epidemiology NZ

4. Are there any real NZ data?
Ngaire Kerse - LiLACS NZ.
Life and Living in Advanced Age, a Cohort Study in NZ
Māori and non-Māori octogenarian cohorts
Unexpected results for screening and prevalence
Is MMSE culturally biased?
Margaret Dudley - Māori world view of dementia and developing a cognitive screening tool for Māori
We need a NZ dementia prevalence study that includes all major NZ ethnic groups
LiLACS NZ cohorts 15%/9% score <24 on MMSE but prevalence of dementia same in Māori and non-Māori

5. CMDHB memory service
360 patients newly diagnosed with dementia by CMDHB memory service between 2013 and 2016.
142 NZ European (mean age: 79.2, SD 7.4)
43 Māori (mean age: 70.2, SD 7.6)
126 Pacific (mean age: 74.3, SD 7.6)
49 other ethnicities (mean age: 78.0, SD 8.5)
Difference adjusted for gender and dementia type:
Māori 8 years younger than NZ Europeans
Pacific 5 years younger than NZ Europeans
Cullum et al, 2018

6. No blood test or scan for dementia
We need a community-based NZ dementia prevalence study: diagnosis and door-knocking
No blood test or scan for dementia
Dementia diagnosis is by clinical assessment
Need one standardised assessment of dementia to use in all
Assessment to capture family/caregiver experience too
Diagnosis needs to be culture-fair and education-fair
10/66 dementia protocol
(used in China, India, Latin America, Africa & Singapore)
Sampling methods
Random door knocking because no register available

7. How to do a prevalence study in NZ
Translate the 10/66 protocol:
Te Reo Māori, Samoan, Tongan, Hindi, Cantonese & Mandarin
Interviewers:
Bilingual bicultural interviewers
trained in 10/66 methods
Participants:
No one likes a cold-caller
Community engagement

8. Bottom-up not top-down
Community engagement
Co-design projects
Culturally safe research
Education is two-way
Qualitative research
Lived experience (stories)
How do families cope?
Culturally specific issues
Raise awareness. De-stigmatise.
Have fun!

9. Study launch of LiDiA Feb 2018: Living with Dementia in Aotearoa

10. LiDiA qualitative research projects
Team leaders
Māori – Margaret Dudley
Tongan – Tony Kautoke
Samoan – Fiva Fa’alau
Chinese – Gary Cheung
Indian – Rita Krishnamurthi
Kaumātuatanga ō te roro
-the ageing brain
Pākehā – Liz Smith, Litmus
Alzheimers NZ Report
LiDiA

11. LiDiA validity studies
Translation/adaptation of 10/66 dementia protocol
Māori, Tongan, Samoan & Hindi
Training for 10/66 interviewers
Test the diagnostic accuracy in
Māori, Tongan, Samoan &
Fijian Indian communities

12. LiDiA feasibility study
Community engagement
Over-sampling
Door-knocking
South Auckland
Māori
Qualitative
Validity 10/66
Samoan
Chinese (Mandarin)
Qualitative only
Chinese (Cantonese)
Pākehā
Qualitative only
(Alzheimers NZ)
Indian
(Hindi)
Tongan

13. LiDiA timeline 2018: Qualitative interviews of lived experience
2019: Adaptation and validity testing of 10/66 in Te Reo Māori, Samoan, Tongan, & Hindi
2019: Feasibility study for sampling methods
9/11/2018

14. 2020: Dementia prevalence study?

15. LiDiA research team leads:
Sarah Cullum (PI)
Margaret Dudley (Māori)
Fiva Fa’alau (Samoan)
Tony Kautoke (Tongan)
Rita Krishnamurthi (Indian)
Gary Cheung (Chinese)
Susan Yates
Ngaire Kerse