”What do we mean by dementia?“ Different communities have different understandings of dementia, some see dementia as a disease, others see it as a natural part of normal ageing” Tell me what you know about dementia and memory changes as people get older? What are the Tongan/Chinese/Indian terms use to talk about dementia? What is your understanding of dementia? What do those words mean? Why do you think older people get dementia? How are dementia and normal ageing related? What are the signs that someone has dementia? What do you think causes dementia? “Could you tell me more about that?”	Getting the diagnosis Could you tell us how it has been for you? What did you first notice? Could you describe the changes What was your explanation Who diagnosed you? (GP/hospital doc/other?) Can you remember what happened Did they tell you the results of your blood tests/memory tests/scan? How did you feel when they told you the diagnosis? How were the staff towards you (sympathetic? value your opinion? respectful?) What kind of information did they offer on what to do next (or about services)? What were the most significant moments in the process (what do you remember most clearly)? “Could you tell me more about that?”
After the diagnosis How are things now? What changes have you made to cope? What help do you need? How do your family/community help you? * Has it changed your role in the family/community? * What are the positive things that have happened? How do other people outside the family act towards you? Do you tell other people about the diagnosis? (if not, why not?) “Could you tell me more about that?” * think about risks eg cooking, driving, being home alone; but also positive changes e.g.) more family time, increased understanding of their experience, less arguments with family as they understand the disorder	Services What kind of help do you get? e.g., GP, nurse, home/day care? What kind of things help/don’t help? What do you need but don’t get? Do you use “day centres”? (which one) How often do you go? What do you think about those services? What do you like/didn’t like? Is it specifically for people from …… (Tonga, Samoa, India, China) How do you think things might change in the future? What do you think you might need in the future? “Could you tell me more about that?” If you weren’t living in New Zealand how do you think your life would be different? (if you were still living in …..)
Questions for people with dementia Is there anything you want to add? What are your main concerns now? What is most difficult for you? What is most positive? In our culture we are often expected to look after our elders—how is that for you Have you planned for the future? “Could you tell me more about that?” Is there anything that we have missed? “Could you tell me more about that?”	Questions for carers Is there anything you want to add? How many hours on average are you a care partner for [Name] at your home? Describe what caring you provide. How does your caring routine impact your daily life? Do you talk with others about your role as a care partner? How do you do this? Does anyone else provide care for [Name]? What is your reason for taking on the role of care partner? What are your main concerns around caring for your relative with dementia? What is most difficult for you? What is most positive? In our culture we are often expected to look after our elders—how is that for you Have you planned for the future? “Could you tell me more about that?” Is there anything that we have missed? “ Could you tell me more about that?”