Death and dying

New Zealand Dementia Foundation > Research Radar > Death and Dying
Digital Story-Telling Research Methods: Supporting the Reclamation and Retention of Indigenous End-of-Life Care Customs in Aotearoa New Zealand.


Moeke-Maxwell, T., Mason, K., Williams, L., & Gott, M. (2020)
Progress in Palliative Care, 28(2), 101-106.

Information on traditional end-of-life care customs was gathered from Māori in New Zealand. How health and palliative care services helped or hindered families to use their customs within different health care settings was also examined, including in the context of loved ones with dementia.

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End of Life Care for Long-Term Care Residents With Dementia, Chronic Illness and Cancer: Prospective Staff Survey.


Boyd, M., Frey, R., Balmer, D., Robinson, J., McLeod, H., Foster, S., … & Gott, M. (2019).
BMC Geriatrics, 19(1), 137.

The revision of the Council of International Organisations of Medical Sciences (CIOMS) International ethical guidelines for health‐related research (2016) heralds a paradigm shift from the ‘protectionist’ policies towards a more nuanced and inclusive approach to research participation.  New Zealand law currently adopts a ‘best interests’ standard, which significantly restricts the scope of permissible research that may be performed in this context. This article argues that the CIOMS 2016 should influence change to New Zealand’s legal framework for ethical review of research.

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Advance Care Planning for People With Dementia: Ordinary Everyday Conversations.


de Vries, K., & Drury-Ruddlesden, J. (2018). 
Dementia, 1471301218764169

An exploratory qualitative study of 23 New Zealanders who had been carers or provided support for a family member with dementia who had died within five years of the interview was undertaken. The overarching theme, ‘ordinary everyday conversations’, describes how informal conversations and discussions within families about end-of-life preferences have been embedded in family interactions over the years.

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The Supportive Hospice and Aged Residential Exchange (SHARE) Programme in New Zealand.


Frey, R., Boyd, M., Robinson, J., Foster, S., & Gott, M. (2017).
Nurse Education in Practice, 25, 80-88.

Supportive Hospice and Aged Residential Exchange (SHARE) integrates specialist palliative care nursing into aged care facilities, including dementia care. Pilot results indicate that the intervention is, overall, seen by staff as a success. Building relationships with key stakeholders is essential for model implementation.

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Family Experiences of the Transition to Palliative Care in Aged Residential Care (ARC): A Qualitative Study.


Frey, R., Foster, S., Boyd, M., Robinson, J., & Gott, M. (2017).
International Journal of Palliative Nursing, 23(5), 238-247.

In-depth interviews were conducted with 26 family members who were most involved in the care of residents who had died within the last year. There was little evidence that a well-managed transition to a palliative care approach was underway. The needs of residents dying with advanced dementia added to the challenges of palliative care provision.

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International Variation in Place of Death of Older People Who Died From Dementia in 14 European and Non-European Countries.


Reyniers, T., Deliens, L., Pasman, H. R., Morin, L., Addington-Hall, J., Frova, L., … & Wilson, D. M. (2015). 
Journal of the American Medical Directors Association, 16(2), 165-171.

The objective of this study was to examine variation in the place of death of older people dying from dementia in countries across four continents. The place of death of older people who died from a dementia-related disease differs substantially between countries, which might point to organisational differences in end-of-life care provision.

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Do Those Afflicted With Dementia Have a Moral Duty To Die? A Response to Baroness Warnock.


Malpas, P. J. (2009). 
The New Zealand Medical Journal, 122(1296), 53-60.

In October 2008, Baroness Warnock, medical ethicist and veteran British governmental advisor, claimed that an individual afflicted with dementia may have a moral duty to die when their continued living “wastes” the lives of others and the resources of the National Health Service. In this paper, a New Zealand lecturer in clinical ethics concludes that no one has a moral duty to die, especially not those who are afflicted with dementia.

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Provision of Palliative and End-of-Life Care in New Zealand Residential Aged Care Facilities: General Practitioners’ Perspectives.


Balmer, D., Frey, R., Gott, M., Robinson, J., & Boyd, M. (2020).
Australian Journal of Primary Health, 26(2), 124-131.

This exploratory study examined general practitioners’ (GPs) perspectives on delivering end-of-life care in the New Zealand residential aged care context. Results included the finding that GP training in end-of-life care, especially for those with dementia, was reported to be ad hoc and delivered through informal mentoring between GPs.

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Predictors of Mortality in Māori, Pacific Island, and European Patients Diagnosed With Dementia at a New Zealand Memory Service.


Cullum, S., Varghese, C., Coomarasamy, C., Whittington, R., Hadfield, L., Rajay, A., … & Yates, S. (2020)
International Journal of Geriatric Psychiatry, 35(5), 516-524.

The aim of this study was to examine predictors of mortality in dementia in consecutive referrals to a New Zealand memory service that includes Māori, Pacific Islander, and NZ European patients. The risk of death in people with dementia was increased by age and lower cognitive score at baseline, and was reduced by cholinesterase inhibitors. Compared to NZ Europeans, antipsychotics increased the risk of death threefold in Māori and Pacific Islanders.

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Te Kete Marie—the Peaceful Basket: An Initiative for Supporting People With Dementia or Delirium.


Bolton, L., & Loveard, T. (2016). 
International Journal of Palliative Nursing, 22(3), 130-136.

This article describes the development of a toolkit for interdisciplinary team members to use to improve care for people with dementia or delirium in a hospice inpatient unit. An occupational therapist and two nurses identified that caring for the increasing number of people with dementia and delirium in the unit was a challenge for staff. The authors adopted a collaborative quality-improvement approach to address the problem, engaging both the hospice interdisciplinary team and external community partners. The overall aim was to establish, reinforce, and maintain best practice in the care of people with cognitive impairment.

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Carer Experiences of Inpatient Hospice Care for People With Dementia, Delirium and Related Cognitive Impairment.


Bolton, L., Loveard, T., & Brander, P. (2016).
International Journal of Palliative Nursing, 22(8), 396-403.

This study aimed to explore carer experiences of inpatient unit hospice care for people with dementia, delirium and related cognitive impairment, following implementation of the Te Kete Marie (TKM) initiative aimed at improving care for this patient group. Semi-structured interviews were undertaken with 10 carers. The findings suggest that carer confidence is enhanced by: staff awareness and response to individual patient needs, interests and preferences, as well as carer requirements for information and consultation; an environment that engenders experience of comfort, safety, flexibility, privacy and outdoor connection; carer preparedness for patients who subsequently transition home or to alternative residential care.

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