NSW Ombudsman's report: Down syndrome and dementia

The NSW Ombudsman has responsibility for reviewing the deaths of people with disabilities in care, and has just published the fifth annual report about reviewable deaths, concerning those occurring during 2007.

Report of Reviewable Deaths 2007: Volume 1 Deaths of people with disabilities in care was tabled in the NSW Parliament on 3rd December 2008, and can be freely downloaded from this link. The Ombudsman's introduction emphasises the ongoing monitoring role of the Ombudsman's Office, beginning:

My office is one of very few agencies in the world with the function of reviewing the deaths of people with disabilities in care.

Our work in reviewing individual deaths is important: it highlights gaps in service practice, policy and systems, and drives service improvement from a grassroots level.

It is through considering the deaths of people with disabilities in care more broadly, identifying trends, risk factors and systems issues, that we aim to minimise preventable deaths in this vulnerable community. Our annual report provides the means for us to consider the deaths of people with disabilities in care in the context of the larger service system, and to effect change across government and non-government agencies, and across disability, health, and other sectors.

The main way in which we seek to bring about change through our annual reports is by making recommendations to government and service providers, and monitoring the implementation of those recommendations until we are confident that progress has been made.

This volume includes a separate chapter on Down syndrome and dementia, prompted by the prevalence of dementia in people with Down syndrome whose deaths are reviewed:

....... this year we took a closer look at these individuals and current research in this area. Of the 63 people with Down syndrome who lived in care who died between 2003 and 2007, 29 were diagnosed with dementia. Of the 34 people who did not show signs that they had dementia while they were alive, five were noted at post-mortem to have changes in the brain consistent with Alzheimer’s disease.

The report includes a literature review on Down syndrome and dementia commissioned from the Centre for Developmental Disability Studies (University of Sydney), and a file review the people with Down syndrome and dementia who died in 2003 - 2007. The oldest person with Down syndrome whose file was reviewed was 79 (and had dementia), and another person of 70 is reported not to have had dementia. Comprehensive file reviews are illustrated by case studies.

12 recommendations arose from the review. Responses from the Department of Ageing, Disability and Home Care and NSW Health to each are documented, with further comments from the ombudsman.