Faculty of Medicine and Health, The University of Auckland Living with dementia: the experiences of Samoan families in Aotearoa Fuafiva Fa’alau Pacific Health Faculty of Medicine and Health, The University of Auckland TALOFA LAVA MUTLI – DISCIPLINES RESEARCH PROJECT WITH - VARIOUS UNIVERSITIES AND FUNDERS MIDDLE LOGO – THE BRAIN IN THE MIDDLE IS THE LOGO FOR – THIS RESEAWCH PROJECT TEAM – ABBREVIATED AS LIDIA LIDIA STANDS FOR: Lived Experiences of Dementia In Aotearoa! 5 logos represents different disciplines and funders that are part of this MULTI DISCIPLINES AND MULTI CULTURAL research project.

LIDIA STUDY: What is Involve? 2018: Qualitative research: Lived experience of dementia in multicultural groups in New Zealand Interviews about lived experience of memory problems 2019: Developing a dementia diagnosis interview tool To measure memory problems & cost of care needed 2019: Testing the dementia diagnosis interview tool With different communities 2020: NZ dementia prevalence study? LiDiA is Lived Experiences of Dementia In Aoetearoa! 3 COMPONENTS/PHASES OF THE LIDIA PROJECT 1st PHASE – MY PRESENTTION 2018:  Lived experience of dementia in multicultural NZ Interviews with people about the lived experience of memory problems and dementia in different NZ communities.  These interviews are being conducted in multiple languages and cultures. 2019: Developing a dementia diagnosis interview for use in Māori, Samoan, Tongan and Fijian Indian families Developing a tool to measure memory problems and the cost of care needed for Māori, Pacific and Asian families living with memory problem and dementia (including the care provided by the family). 2019:  Testing the dementia diagnosis interview in different communities Working with people in their own communities to interview families in a respectful and culturally safe manner. 2020:  Hopefully the first NZ dementia prevalence study

The LIDIA research team? Dr Sarah Callum Professor Ngaire Kerse Dr Margaret Dudley Dr Gary Cheung Dr Fuafiva Fa’alau Dr Rita Krishnamurthi Dr Staverton Kautoke Dr Susan Yates Ethnic Groups Involved: Maori Asian Samoan Indian Tongan Our research team consists of very experienced academic and ethnic diverse researchers I am responsible for the Samoan ethnic groups for this project.

Samoans in New Zealand Pacific Population in New Zealand 295,941 Pacific peoples 62% New Zealand born Projection: 480,000 by 2026 A breakdown of Pacific ethnicities: Samoan: 49% Niuean: 8% Cook Island: 21 % Fijian: 5% Tongan: 20% JUST A BRIEF LOOK INTO the Pacific population in NZ – Two key things that I wish to emphasise here are: 62% NZ born – and my prediction that within the next 10 years – knowledge and understanding will be different

Prevalence of Dementia Projections by 2038: ‘European or other’ will decrease (from 87.5% in 2016 to 77.0% in 2038) And other ethnicity groups will increase: Asian from 5.1% in 2016 to 11.7%, Māori from 5.1% in 2016 to 8.0% Pacific peoples from 2.3% in 2016 to 3.3% CURRENT DATA SHOWS THAT PREVALENCE OF DEMENTIA IN NZ IS A HUGE CONCERN 48,182 people from 2011 to 62,287 in 2016. Prediction: By 2050 there will be 170,212 with dementia. BUT THE PROJECTIONS THAT I WISH TO EMPHASISE HERE IS THE ETHNIC BREAKDOWN – seeing here

The Qualitative component Interviews with Samoan families 5 mild dementia 5 caregivers for mild/moderate dementia 5 caregivers for severe dementia Recruitment: Memory clinic, Pacific clinics The Narratives: knowledge and experiences Understanding of what it is! Experiences of living/coping with it! Access to support, services and information! PRESENTTION TODAY – focused on PRELIMINARY THEMES FROM THE QUALITATIVE interviews OF THIS STUDY FOR THE QUALITATIVE PHASE – WE INTERVIEW --------- >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> I MUST SAY THAT MY PRELIMINARY REFLECTION ABOUT THE THEMES THAT I WILL SHARE WITH YOU TODAY LEVEL OF UNDERSTANDING AND EXPLANATIONS OF CAUSES – INFLUENCE BY OTHER FACTORS – LEVEL OF EDUCATION AGE – HOW OLD THEY ARE? LENGTH OF TIME IN NZ HOW RELIGIOUS THEY ARE! FAMILY DYNAMICS

1. Meaning & causes Understanding of what it is! Samoan terms: valevale matua or galogalo matua part of old age forgetting things associated with Christian beliefs - BIBLE Causes! Memory loss: ageing Depressing situations in family life Breakdown in relationships Overwhelmed with obligations Loss of family members Unsure- Deterioration of the brain DIVERSITY OF EXPERIENCES

2. Diagnosis Clients: Unsure GP referral to specialist after family raised the issue Carers: Notice the changes in behaviour Getting angry easily Unresponsive Roaming around Forgetting things Visit the GP Assessed and prescribed medication Referrals to specialists THE PROCESS OF DIAGONOSIS – MAINLY UNSURE MOST OF THE TIME UNTIL RAISED WITH GP

3. Lack of knowledge Clients: Some mild are aware of the changes Carers Lack of knowledge: read up on the information given Most follow instructions for prescriptions Some have altered medication doses Sought advice to change medication due to side effects Level of awareness of support services available for caregivers And when episodes happen based on feedback from family – when episodes happens there is frustrations from both sides

4. Acceptance Clients: Fatalistic: it is the will of God Carers HOPE – hopeful that they will get better Samoan traditional healers Dealing with hardships (roaming late at night) Grandchildren understanding and contribution No plan for future when illness becomes more serious Sharing with the church groups: collective effort to look out

4. The effect! Clients: Vulnerability Dependency Non-participation Carers: Breakdown from exhaustions Marriage problems Issues for siblings Employment choices THE EFFECT AND IMPACT – IS HUGE FOR BOTH THE CLIENTS AND CARERS

Summary Normalisation of memory loss as part of ageing Fatalistic – it is the will of God Young ones with dementia: due to external causes Have different understanding of what it is and causes Lack of knowledge about the support services available for caregivers Caring for elders at home: level of trust with rest home services