Reparations for Harms Experienced in Residential Aged Care

This paper explores the possibility of reparations for harms suffered by people in residential aged care, focusing on experiences of people with dementia. We first explain how systemic and structural harms occur within residential aged care and outline how they constitute human rights violations. Using Australia as a case study, we then consider the limitations of court-based approaches to pursuit of redress and the current absence of redress from policy responses. We then propose an expansive and multifaceted notion of redress as reparations, where governments, residential aged care operators, medical and legal professionals, and civil society engage in ongoing recognition of harms and specific actions to prevent recurrence. By drawing on the United Nations Convention on the Rights of Persons with Disabilities and the Van Boven Principles, we consider the application to aged care of the framework of access to justice and reparations for human rights violations. This framework encompasses inclusive and accessible processes to access reparations for individuals in such forms as compensation and rehabilitation, and collective reparations, including apologies and public education. In order to ensure that reparations support the prevention of further harm in aged care, the design of redress could form part of broader government strategies directed toward increasing funding and access to community-based support, care, and accommodation, and enhancing the human rights of people with dementia

Health Professional Perspectives on Rehabilitation for People With Dementia

© The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. This author accepted manuscript is made available following 12 month embargo from date of publication (February 2019) in accordance with the publisher’s archiving policyMultidisciplinary rehabilitation is not incorporated into the usual care pathway for dementia despite increasing demand from key advocates. Clinician views regarding the relevance of rehabilitation in dementia care are not well known. This qualitative study explored the perspectives of health professionals regarding barriers to provision of multidisciplinary rehabilitation programs for people with dementia

Developing a new quality of life instrument with older people for economic evaluation in aged care: Study protocol

Introduction The ageing of the population represents a significant challenge for aged care in Australia and in many other countries internationally. In an environment of increasing resource constraints, new methods, techniques and evaluative frameworks are needed to support resource allocation decisions that maximise the quality of life and well-being of older people. Economic evaluation offers a rigorous, systematical and transparent framework for measuring quality and efficiency, but there is currently no composite mechanism for incorporating older people’s values into the measurement and valuation of quality of life for quality assessment and economic evaluation. In addition, to date relatively few economic evaluations have been conducted in aged care despite the large potential benefits associated with their application in this sector. This study will generate a new preference based older person-specific quality of life instrument designed for application in economic evaluation and co-created from its inception with older people. Methods and analysis A candidate descriptive system for the new instrument will be developed by synthesising the findings from a series of in-depth qualitative interviews with 40 older people currently in receipt of aged care services about the salient factors which make up their quality of life. The candidate descriptive system will be tested for construct validity, practicality and reliability with a new independent sample of older people (n=100). Quality of life state valuation tasks using best worst scaling (a form of discrete choice experiment) will then be undertaken with a representative sample of older people currently receiving aged care services across five Australian states (n=500). A multinomial (conditional) logistical framework will be used to analyse responses and generate a scoring algorithm for the new preference-based instrument. Ethics and dissemination The new quality of life instrument will have wide potential applicability in assessing the cost effectiveness of new service innovations and for quality assessment across the spectrum of ageing and aged care. Results will be disseminated in ageing, quality of life research and health economics journals and through professional conferences and policy forums. This study has been reviewed by the Human Research Ethics Committee of the University of South Australia and has ethics approval (Application ID: 201644).This work is supported by an Australian Research Council Linkage Project (grant number LP170100664). Additional funding support from our partner organisations ECH, Helping Hand, Uniting Age Well, Uniting ACT NSW and Presbyterian Aged Care is also gratefully acknowledged

Active inclusion of people living with dementia in planning for dementia care and services in low- and middle-income countries

Involving people living with dementia in service design and planning has become more common in high-income countries. It remains rare in low- and middle-income countries where two-thirds of the world’s people with dementia live. In this commentary article, we explore the barriers to inclusion of people living with dementia in planning in low- and middle-income countries and make a case for the inclusion of people living with dementia in care and service planning. We suggest how this can be done at individual, community or national and state level using the following principles: 1) respecting the rights of people living with dementia to self-determination; 2) valuing people living with dementia’s unique understanding of dementia; 3) creating a culture of active inclusion which creates a space for people living with dementia to participate and 4) ensuring appropriate accommodations are in place to maximise participation

Not just a challenging behaviour

Abstract presented at the 30th International Conference of Alzheimer\u27s Disease International, 15 - 18 April 2015, Perth, Australi

Stigma and language: the future

Abstract presented at the 30th International Conference of Alzheimer\u27s Disease International, 15 - 18 April 2015, Perth, Australi

Dementia and prescribed disengagement

Following a diagnosis of dementia, most health care professionals, including neurologists, geriatricians, physicians, general practitioners, and dementia service providers prescribe giving up a pre-diagnosis life and put all the planning in place for the demise of the person newly diagnosed with dementia such as wills, powers of guardianship and other end of life issues. I was told \u27to give up work, give up study, and to go home and live for the time I had left\u27. By 2009, I had termed this Prescribed Dis-engagementTM, and I ultimately chose to ignore it. One has to ask the question: Why is it that one day I was studying a tertiary degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give it all up, to give up life as I knew it, and start \u27living\u27 for the time I had left? This Prescribed Dis-engagementTM sets up a chain reaction of defeat and fear, which negatively impacts a person\u27s ability to be positive, resilient and proactive

Dementia: stigma, language, and dementia-friendly

The incidence of dementia worldwide is rapidly increasing and Alzheimer\u27s Disease International (ADI) (2013) reported that \u27there are 7.7 million new cases of dementia each year, implying that there is a new case of dementia somewhere in the world every four seconds\u27. In Australia, there are over 332,000 people diagnosed with dementia, with an estimated 1700 new diagnoses per week (Alzheimer\u27s Australia, 2014c). As the incidence of dementia rises globally, the rate and scale at which it is currently escalating has forced governments to make it a health priority, and from a consumer\u27s perspective, it is therefore very timely to re-consider the language being used to represent people with dementia and its impact on stigma. I have also considered the presence of stigma within the stigma literature, and wonder if the presence of stigma towards people with dementia, within the dementia and stigma literature, exacerbates the stigma, or prevents the timely translation of good research into better practice. Finally, I will briefly discuss the concept of a dementia friendly community, and the challenges this presents to me as a person living with younger onset dementia

Would future NHS dementia care easily lend itself to private markets?

Abstract presented at the 30th International Conference of Alzheimer\u27s Disease International, 15 - 18 April 2015, Perth, Australi

Reparations for Harms Experienced in Residential Aged Care

This paper explores the possibility of reparations for harms suffered by people in residential aged care, focusing on experiences of people with dementia. We first explain how systemic and structural harms occur within residential aged care and outline how they constitute human rights violations. Using Australia as a case study, we then consider the limitations of court-based approaches to pursuit of redress and the current absence of redress from policy responses. We then propose an expansive and multifaceted notion of redress as reparations, where governments, residential aged care operators, medical and legal professionals, and civil society engage in ongoing recognition of harms and specific actions to prevent recurrence. By drawing on the United Nations Convention on the Rights of Persons with Disabilities and the Van Boven Principles, we consider the application to aged care of the framework of access to justice and reparations for human rights violations. This framework encompasses inclusive and accessible processes to access reparations for individuals in such forms as compensation and rehabilitation, and collective reparations, including apologies and public education. In order to ensure that reparations support the prevention of further harm in aged care, the design of redress could form part of broader government strategies directed toward increasing funding and access to community-based support, care, and accommodation, and enhancing the human rights of people with dementia