1. 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.

2. 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

3. 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.

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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