1. Experiences of dementia in the NZ Indian community
Dr Rita Krishnamurthi
and the LiDiA research team
As the research leader in LiDiA with the Indian community, I will be presenting some of the findings of our initial engagement with the Indian community,

2. Prevalence of dementia in NZ
Population-based prevalence study has never been conducted in NZ, estimates based on overseas models
Hence true prevalence across ethnic groups is unknown
Challenges of measuring prevalence
Which tools to use
Language and cultural considerations
Hence, need to explore experiences in the community
Conduct feasibility studies

3. Living with Dementia in Aotearoa (LiDiA):
2018: Qualitative research in Māori, Pacific & Asian including Hindi
2018: 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
Living with Dementia in Aotearoa (LiDiA):
12/11/2018

4. Indians in New Zealand
People of Indian origin: 4% of the NZ population, 33% of Asians
Varying origins (e.g. India, South Africa, Fiji) and languages (Hindi, Tamil etc.)
Proportion of Indians increased by 48% between 2006 and 2013
Studies in India- prevalence varies according to diagnosis methods, demographics .
Prevalence and impact of dementia in the Indian community unknown in NZ
Some background of the Indian community in NZ
There has been a lot of research in India to try and measure the prevalence of dementia in the community. However, results vary greatly and cannot readily be extrapolated to the NZ Indian community

5. Phase 1: Qualitative interviews
Aim to identify
current understanding of dementia
experiences of living with dementia, caregiving, accessing healthcare and social services
Gap/unmet needs, focus for research areas
Interviews with 5 people with mild/moderate dementia, 10 caregivers, identified from the community
Recruited from Shanti Niwas, Memory clinic
As mentioned by Sarah previously, our planned research will be conducted in several phases, with the first being a series of interviews with people the community with dementia and with their caregivers. These interviews aim to ….

6. Semi-structured interviews
What do people understand about dementia?
How is it affecting people’s lives?
What would they like from health services, social services?
What’s important for the Indian community?
Caregiver experiences
How is it affecting the caregiver
Support, unmet needs

7. Interview Participants
Participant (PWD)
Caregiver
Dementia
Interview 1
Male (61)
wife
Moderate
Dyad 2
Female
Son (41) /daughter-in-law
Severe
Caregivers 3
Male
Wife (60) 4
Female (79)
Daughter (52) 5
Male (65)
Wife (68)
Mild

8. Themes: Meaning
Understanding of dementia
Normal part of aging
Forgetting
Worry
Depression
Aggressive
Repetitive
“For me it means memory loss” female, daughter, caregiver (severe)
“a reason to worry” Male, mild dementia
“it’s a weakness in memory, weak body,
and it’s also really cold so…! Female, caregiver (mild-moderate)
In the next few slides I will be presenting some main findings that came out of our conversation – mostly through quotes that came directly from the interview, and a possible main theme or themes.

9. Themes: Causes
What could cause it?
Age
Loss of a job
Weakness
Stroke
Loneliness
“I see one person..he lost his job, he got dementia” Male, caregiver
“this is normal….because he is getting older, he forgets” female caregive (mild)
“there is loneliness here, without our own people ! Female, caregiver (mild-moderate)
And this continued along the same lines…..

10. Themes: Diagnosis
Process of diagnosis, health services
In India
self-referred
GP/clinic
Cost of scans
Lack of information
Little follow-up
“I had my scan in India, that’s what the doctors here used to diagnose me…doctor said its good you got the scan done”
“.., she was very aggressive and.. so I took her to the GP and then the GP said ummm.. “she’s fine and old age, nothing to..,” you know that, but I told to GP, “no she's definitely got some kind of an issue because you know, uhh, cos I know, my mum.”” Female, caregiver
And this continued along the same lines…..

11. Themes: Acceptance
How do you feel… That’s how it is It has happened It’s a worry Stress Hard work
“.., I have memory problems..just sometimes I forget ..a date, where I put something, that’s all, nothing major.” male, mild dementia
“…he gathers things repeatedly, hides things under the bed…but I don’t react, I put things away” wife, caregiver of above

12. Themes: Caregiver burden
How has it affected you?
Keep busy
How to maintain relationship
Worry for own health
Need for independence (drive, speak English)
“If I could drive, I would get a job..if you can drive and speak English you have no problems….” (Female, caregiver)

13. Themes: Caregiver/Services
Services are good, helpful for reducing burden/stress
Prefer culture sensitive rest-home (vegetarian, Indian food, language, familiar people)
No follow-up, no culturally considered discussion
Better because in NZ, living longer
Cultural specific services (e.g.SN) helpful for loneliness
“What about me, I have health problems too, I am old and tired. I need help on how to deal with this person – he thinks nothing is wrong with him” Caregiver, female (moderate)

14. Themes: Future
Rest-home – last option, prefer to keep at home Indian culture – we look after our family, family support helps Coping Things will go they are going now Love to keep busy, meet people. Will wait and see what the future holds…

15. Summary
Common perception- dementia = memory loss, due to aging, external stress
Overall services received were good
Having a diagnosis is crucial for understanding, and getting services/help
Living in NZ -better quality of life but also meant loneliness, high cost, delay of medical procedures e.g. scans
Acceptance of condition and needing to just get on with it with support
Caregiver stress – own health, coping

16. Future work
Limitations, preliminary– small sample, may not be representative of larger community
Future work – compare experiences of different ethnic groups
Present findings to stakeholders
Plans to action unmet needs

18. Acknowledgements Shanti Niwas Study participants
Dr Ekta Dahiya – research assistant
LiDiA research team
Funders (HRC, BRNZ)