Supporting People Living With Advanced Dementia

New Zealand Dementia Foundation > Resource Hub > Advanced Dementia Care
The later stages of dementia and end-of-life care. A guide for people with dementia and their family/whānau 

Alzheimer’s New Zealand 

This booklet is designed to provide information for people with dementia and their families about what to expect in the last stage of dementia. It highlights some issues worth considering, including what happens as the end of life nears and after death. 

Advanced dementia.

Social Care Institute for Excellence, 2015 (UK)

This resource for providers of dementia care includes a summary of advanced dementia, the individual’s experience, caregivers’ experience, communication, and support, as well as a research summary. The resource can be read online, but a free registration is required to download it.

The Later Stages of Dementia.

Alzheimer’s Society (UK)

While not specifically aimed at health professionals, the Alzheimer’s Society website provides a comprehensive and easy-to-read summary of expected symptoms and advice for anyone supporting a person in the later stages of dementia.

Oxleas Advanced Dementia Service: Supporting Carers and Building Resilience.

Lara Sonola, Veronika Thiel, Nick Goodwin, and Dennis L Kodner, 2013 (UK)

This case study looks at Oxleas Advanced Dementia Service, which seeks to help patients with advanced dementia to live at home for as long as possible in the last year of life with support from family and/ or carers. The core team works with GPs, secondary care and social services to support carers in providing ongoing and palliative care. Staff respond to crises at home to prevent unnecessary hospital admissions, where possible, and to reduce the likelihood that patients are placed in residential care.

Supporting People in the Advanced Stages of Dementia.

Skills for Care, commissioned by the UK Department of Health, 2013 (UK)

This resource is aimed at leaders and managers working in services that provide care and support to people in the advanced stages of dementia to guide best practice in staff knowledge and skills. While some of the case studies are UK-specific, they contain useful guiding principles.

Evaluating Emotional and Psychological Needs for People in the Later Stages of Dementia

Alzheimer’s Society, 2015 (UK)

While aimed at UK assessors, this document provides very clear, structured guidance on assessing the emotional and psychological needs of people living with advanced dementia.