People with Dementia

As the community ages, dementia is becoming increasingly common. For a person with dementia approaching the end of their life, issues around decision making, communication and assessment need to be considered. These resources may assist.

Key Resources

Dementia Australia
Dementia (Carer Gateway)

Practice Issues

Abbey J, Palk E, Carlson L, Parker D  Clinical practice guidelines and care pathways for people with dementia living in the community. 2008. Queensland University of Technology, Brisbane (freely accessible 1.1MB pdf) 
The guidelines and pathways encompass non–pharmacological care for the person with dementia from recognition, assessment and diagnosis until death. The guidelines and pathways are intended to be used by health professionals and policy makers who plan, organise and deliver care for people who have dementia and their carers.

Palliative approach to care for people with advanced dementia. Best practice: evidence-based information sheets for health professionals Joanna Briggs Institute 2011;15(5):1-4. (freely accessible 220kb pdf) 
The purpose of this best practice information sheet is to present the best available evidence on effectiveness and appropriateness of a palliative approach to care for people with advanced dementia.

Phillips JL, West PA, Davidson PM, Agar M Does case conferencing for people with advanced dementia living in nursing homes improve care outcomes: evidence from an integrative review? Int J Nurs Stud. 2013 Aug;50(8):1122-35.
This integrative review aimed to appraise the evidence for case conferencing as an intervention to improve palliative care outcomes for older people living with advanced dementia in nursing homes. Results found case conferencing provides opportunities to improve care palliative care outcomes for older people with dementia by engaging family and all relevant internal and external health providers in prospective care planning. More evidence is needed to determine the efficacy and cost-effectiveness of case conferencing as a strategy for improving care outcomes for older people living with advanced dementia in nursing homes. The evidence generated by this integrative review will be of interest to policy makers, aged care organisations and clinicians alike, especially as services endeavour to meet the increasingly complex care needs of older people admitted to nursing homes with advanced dementia, and the needs of their families.

Stirling C, Andrews S, McInerney F, Toye C, Ashby M, Robinson A Talking about dementia and dying: A discussion tool for aged care residential facility staff (2011). (freely accessible 1.21MB pdf)
Health professionals often avoid talking about death and dying with patients and relatives, and this avoidance is compounded in cases of dementia by lack of knowledge of trajectory and prognosis. Unfortunately, this impacts on care, with many terminally ill dementia clients receiving inadequate palliation and excessive intervention at end-of-life. This tool was developed using best-practice evidence, feedback from aged care facility nursing and care staff and specialist input and was  subsequently trialed and qualitatively evaluated via thematic analysis of data from family interviews and staff diaries.

The peer-reviewed paper presenting the development and evaluation of the discussion tool is also available:

Associated Materials

Clinical practice guidelines for people with dementia Dementia Australia (Feely avaaible website)
This set of gudieleins includes Clinical Practice Guidelines and a Consumer Companion Guide

Professional resources. Dementia Australia Current (freely accessible website)
Dementia Australia offers a number of resources which may assist professionals in understanding the many aspects of living with dementia. Resources are available for cultural diversity, Aboriginal and Torres Islander peoples, LGBTI individuals and information about dementia in many different languages.

Clinical evidence - Dementia. CareSearch Current (freely accessible website)
Issues for palliative care of patients with dementia are provided including palliative care challenges, caregivers and care settings, prognosis and advance care planning and symptom management. A range of one-click PubMed searches for dementia and associated topics within a palliative care context are available.

This content was developed for the Decision Assist program, and is managed by CareSearch.

Page updated 28 September 2018