Do Māori and Pacific peoples present with dementia at a younger age? Saturday, 27th October 2018 Do Māori and Pacific peoples present with dementia at a younger age? Dr Susan Yates Clinical Psychologist / Neuropsychologist / Research Fellow Ethnicity may affect presentation to clinical services in people with dementia; however, no studies have examined this in Māori or Pacific peoples in New Zealand (NZ). Our objective was to examine the routinely collected clinical data from a memory assessment service in South Auckland to examine the presentation of dementia in major NZ ethnic groups.

Estimated Dementia in NZ 2016 estimates: 62,287 people in NZ have dementia, with 170,212 by 2050 Total economic cost associated: $1.7 billion Total burden of disease cost associated: $5.0 billion Overseas research indicates 50 – 80% of cases are undiagnosed/undocumented Based on 2016 estimates, over 62,000 people in NZ have dementia and by 2050 over 170,000 people will have dementia. Despite this, research suggests between 50-80% of cases are not diagnosed or documented, despite the huge financial cost that this has on the health system as well as families.

Estimated Dementia in NZ But these are estimates – what about actual data?

Real NZ Data NZ DHB data CDHB Princess Margaret Hospital: Strong link between PWD and cargiver QoL; costs increase with dementia severity; increased carer distress with less support Data collection is poor or not routinely collected on dementia in most health settings Other existing research ‘Dementia in Old age and the need for services’ (1983) LiLACS NZ Study: No difference between older Maori and non-Maori for dementia prevalence. ? Accuracy as only a screening and not a Maori-specific tool. Margaret Dudley: A Maori approach to the assessment and management of dementia (ongoing research) The answer is there is little actual data available. What we do know, is that based on a PhD research study of 53 people with dementia and their carers in Canterbury, there is a strong link between the QoL of people with dementia and their carers, that increased costs were associated with increased dementia severity; and increased carer distress was associated with less support. Otherwise data in DHB settings collection is poor or not routinely collected on dementia in most health settings In the early 80, 598 people over the age of 65 were approached (all people over 80, 1/6 between 75-79, and 1/20 in 65-74 years) in both community and residential homes. Based on administration of the MSQ (questionnaire scored out of 10) and third party questions, 7.7% of participants were considered to have a diagnosis of moderate or severe dementia. No data provided on ethnic differences. The LiLACS NZ Study more recently also looked at dementia as one of their subfindings. The outcomes of this indicated that there is no difference in dementia prevalence between older Maori and non-Maori, but they questioned the accuracy of the assessment as it was not a Maori-specific tool.

CM Health Memory Team Retrospective observational study using routinely collected clinical data from people referred to the Counties Manukau Health Memory Team Referral criteria: primary concern of observable cognitive decline, irrespective of age. Community dwelling. Demographic data (age, sex and ethnicity) and dementia sub-type and severity were analysed.

CM Health Memory Team 1106 people referred in 4 years (2013-2016) Mean age = 74.6 years. 42% = male 40% NZ European, 26% Pacific peoples, 16% Māori, 5% Asian, 12% other/unknown (equivalent to CMDHB population) 785/1106 were assessed (remainder diverted or declined) 74 required an interpreter (mostly Pacific, n=65) 60% dementia (77% new), 13% MCI, 17% deferred due to medical or psychiatric illness, 10% no diagnosis. Our sample: 360 patients with a new diagnosis of dementia

Univariate results NZ European Pacific Māori Other Total (n=360)   NZ European Pacific Māori Other Total (n=360) Sample size 142 (39%) 126 (35%) 42 (12%) 49 (14%) 360 (100%) Mean age (SD) 79.2 (7.4) 74.3 (7.6) 70.2 (7.6) 78.0 (8.5) 76.2 (8.3) Gender (n, % male) 65 (46%) 44 (35%) 17 (40%) 25 (51%) 151 (42%) Dementia severity Mild dementia 81 (57%) 56 (44%) 25 (58%) 187 (52%) Moderate to severe dementia 61 (43%) 70 (56%) 18 (42%) 24 (49%) 173 (48%) Dementia subtype Alzheimer’s disease 67 (47%) 51 (40%) 21 (49%) 23 (47%) 162 (45%) Vascular dementia 23 (16%) 18 (14%) 10 (23%) 4 (8%) 55 (15%) Mixed dementia 32 (23%) 38 (30%) 4 (9%) 8 (16%) 82 (23%) Other dementias 20 (14%) 19 (16%) 8 (18%) 14 (29%) 61 (17%)

Multivariate results: age, ethnicity and dementia subtype   NZ European (n=142) Pacific (n=126) Maori (n=43) Least squares mean age adjusted for ethnicity AD 78.3 (7.7) n=67 73.1 (6.7) n=51 70.2 (8.0) n=21 75.0 95% CI: 73.7-76.2 VD 79.6 (5.8) n=23 74.0 (8.0) n=18 72.5 (4.8) n=10 76.7 95% CI: 74.7-78.7 Mixed 83.6 (6.1) n=32 76.9 (6.9) n=38 73.8 (6.0) n=4 79.2 95% CI: 77.4-80.9 Other dementia 74.9 (6.8) n=20 72.8 (9.9) n=19 65.6 (11.3) n=8 72.2 95% CI: 70.3-74.2

So what does it mean? Māori & Pacific peoples presenting at younger ages Possible reasons: Selection bias – memory service sample but sample is representative of local population Clinician bias – dementia severity and subtype Confounding due to reduced life expectancy - but would expect reduced numbers also Chance – p values for age are <0.0001 Or is it a real effect? Similar findings in studies of indigenous populations Canada, Australia, United States, Guam and Brazil.

To find out we need an NZ dementia prevalence study Possible mechanisms of action: is dementia onset brought forward? Genetic risk factors: population differences in apoE4 genotypes? Socioeconomic risk factors: education, deprivation Medical risk factors: hypertension, diabetes, heart disease, stroke, diet, smoking, alcohol, TBI, hearing loss To find out we need an NZ dementia prevalence study

LiDiA timeline 2018: Qualitative research in Māori, Pacific & Asian 2019: Translation & validity testing of 10/66 dementia protocol in Te Reo Maori, Samoan, Tongan, & Hindi 2019: Feasibility study for sampling methods 2020: NZ dementia prevalence study? So what next? Understanding the lived experience of dementia Qualitative interviews with multiple communities & languages 10/66 Validity Study Maori Indian Samoan Tongan Feasibility Study Interviewing people in their communities, and working out the practicalities of this And then hopefully a national NZ dementia prevalence study

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 Contact: susan.yates@auckland.ac.nz

References Campbell, A.J., McCosh, L.M., Reinken, J. & Allan, B.C. (1983). Dementia in old age and the need for services. Age and Ageing, 12, 11-16. Cullum, S., Mullin, K., Zeng, I., Yates, S., Payman, V., Fisher, M., & Cheung, G. (2018). Do community dwelling Māori and Pacific peoples present with dementia at a younger age and at a later stage compared with NZ Europeans? International Journal of Geriatric Psychiatry, 33(8), 1098-1104. Dementia Economic Impact Report 2016 Gallrach, F. (2010). Quality of Life of People with Dementia and their informal caregivers: A clinical and economic analysis in New Zealand. PhD Thesis, University of Canterbury. Kerse N, Lapsley H, Moyes S, Zawaly K, Hayman K, LiLACS NZ. 2017. Dementia: Supplementary Findings from LiLACS NZ for Section Five, ‘Service Use and Common Health Conditions’ in the report ‘Health, Independence and Caregiving in Advanced Age’. Auckland. School of Population Health, The University of Auckland. Prince M., Bryce R., Ferri C. Alzheimer's Disease International (ADI); London: 2011. World Alzheimer Report 2011—The Benefits of Early Diagnosis and Intervention.