1. Everybody’s Right: People with Dementia and Research
Jean Gilmour Liz Smith
Alzheimers New Zealand Litmus

2. “Not just a number”
“Well, from my perspective, I would want to be not just a number or a name on a piece of paper. I’m a person. And, as such, you’re dealing with me as a one-to-one person. I’d want to be dealt with by the health professionals that way.”
Gilmour, J., & Huntington A,D. (2005). Finding the balance: Living with memory loss
International Journal of Nursing Practice. 11, 118–124

3. People’s stories have transformative power
Specialist qualitative research agency
20 years experience in health and disability research
We have listened to hundreds of people’s stories
Stories change health and disability services

4. Understanding the lives of people living with dementia
What are their experiences through the dementia journey?
What support and services are used or not available?
How do people live well in their community?
What is the effect on relationships with family, friends, community?

5. Traditional research processes can silence voices

6. People with dementia are demanding to be heard
Involve at all stages
Value their knowledge
Ensure safe and secure environment
Keep communication clear and not stigmatising
Be dementia aware
Keep to ‘dementia time’ not researcher time
The Scottish Dementia Working Group Research Sub-group. (2014). Core principles for involving people with dementia in research. Retrieved from

7. Research processes can create barriers to inclusion
Should social researchers assess cognitive capacity to consent to take part in lived experience research?

8. What is informed consent?
Voluntary agreement by a person who understands the research and can decide whether to take part

9. Older Adults’ Capacity to Consent to Research Scale
What is the purpose of the research?
Tell me some things you may be asked about?
What are the things worrying you about the research?
If you don’t want to, do you have to take part in the research
Lee, M. (2010) The Capacity to Consent to Research Among Older Adults. Educational Gerontology 36 (7)

10. Everybody’s right Research processes need to be inclusive
Capacity to Consent to Research Scale - a universal tool

11. An enabling research environment
Seek out the silent voices
People with advanced stage dementia
People with symptoms but no diagnosis
People not acknowledging their diagnosis
People living alone without family support
LGBTI
Miminise barriers to take part

12. “I enjoy a community of people who try their best, knowing that we are never perfect.”

13. Acknowledgements Interview participants Research Advisory Group
Consumer Advisory Group