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

“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

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 www.litmus.co.nz

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?

Traditional research processes can silence voices

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 https://goo.gl/cpwMrK

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

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

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)

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

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

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

Acknowledgements Interview participants Research Advisory Group Consumer Advisory Group liz@litmus.co.nz