Living with Dementia

New Zealand Dementia Foundation > Research Radar > Living With Dementia
This Is Our Story: A Qualitative Research Report on Living With Dementia.


Smith, E., Lamb-Yorski, R., Thompson, A., & Grootveld, C. (2019). 

This report tells the story of the diverse lives and experiences of 49 New Zealanders living with dementia and explores what it means to them to live well with dementia. Alzheimers NZ commissioned this report with Litmus to share these experiences – with other people living with dementia, for those supporting people with dementia, and with decision-makers.

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Developing a Dementia-Friendly Christchurch: Perspectives of People With Dementia.


Smith, K., Gee, S., Sharrock, T., & Croucher, M. (2016).
Australasian Journal on Ageing, 35(3), 188-192.

Christchurch, New Zealand, has a unique opportunity to potentially rebuild as a dementia-friendly city in the wake of the 2010 and 2011 earthquakes. The present study gathered insights from people with dementia about what would enable them to live better in Christchurch. Participants talked about the importance of being connected and engaged; of accommodation from service providers and others in the community; and of raising awareness of dementia and the attributes of the physical environment that require consideration in the rebuild.

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Developing a Dementia-Friendly Christchurch: Perspectives of People With Dementia.


Smith, K. (2015). 
Christchurch, CDHB / Age Concern

The main objective of this report is to acknowledge, validate, and disseminate the perspectives of people living with dementia on what they consider might make Christchurch more supportive of people with dementia to everyone involved in the rebuilding and redevelopment of Christchurch city. The individuals concerned included people living in their own homes as well as those living in care facilities.

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Dementia: The Need for Attitudinal Change.


O’Sullivan, G., Hocking, C., & Spence, D. (2014).
Dementia, 13(4), 483-497.

This study explored the experience of living with dementia in the community in New Zealand for 11 people living with dementia and their care partners. Data were gathered by interviews, observations, and focus group discussions. The findings reveal a conflict between living positively with dementia and enduring the negative attitudes that typify the dominant social discourse.

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Changing History for People Living With Dementia in New Zealand.


O’Sullivan, G., Hocking, C., & Spence, D. (2014). 
Action Research, 12(1), 19-35

This study explored the experience of living with dementia in the community in New Zealand for 11 people living with dementia and their care partners. Data were gathered by interviews, observations, and focus group discussions. The findings reveal a conflict between living positively with dementia and enduring the negative attitudes that typify the dominant social discourse.

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Citizenship and People Living With Dementia: A Case for the Ethics of Care.


Brannelly, T. (2016)
Dementia, 15(3), 304-314.

Three challenges to citizenship are discussed in relation to people with dementia using an ethics of care lens: (a) citizenship as a relationship between the individual and the state; (b) citizenship as a practice, and (c) citizenship as identity and belonging. It is proposed that citizenship can be achieved by promoting inclusion in the definition and creation of policy, research, and practice.

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Still Living, Loving, and Laughing: Spiritual Life in the Dementia Unit.


Perkins, C., Egan, R., Llewellyn, R., & Peterken, B. (2015). 
Journal of Religion, Spirituality & Aging, 27(4), 270-287.

Semi-structured interviews with residents of the dementia unit, family members, and staff provided a three-way perspective on residents’ spirituality. The issues covered included: what gives life meaning, how difficulties are coped with, and how hope is maintained. Themes identified were: “the importance of relationships,” “the retention of identity,” and “the progression of dementia.” With appropriate assistance, the person with advanced dementia can value and engage in spiritual practices that provide ongoing meaning.

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Translating Action Research Into Practice: Seeking Occupational Justice for People With Dementia.


O’Sullivan, G., & Hocking, C. (2013). 
OTJR: Occupation, Participation and Health, 33(3), 168–176.

Sleep disturbances are common with dementia and can adversely affect waking function. However, the perspectives of people with dementia and their family caregivers concerning their sleep are under-researched. This New Zealand study conducted three focus groups with 12 community-dwelling pairs (a person with dementia and their family caregiver).

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Living With Dementia in New Zealand: An Action Research Study.


O’Sullivan, G. (2012). 
New Zealand Journal of Occupational Therapy, 59(1), 31. 

The aim of this study was to undertake a systematic inquiry into how New Zealanders living with dementia in the community can be supported to engage in daily activities, through action research with 11 people living with dementia and their care partners.

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