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,

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

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

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

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 ….

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

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

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.

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…..

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…..

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

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)

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)

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…

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

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

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