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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.

This study aimed to conduct a feasibility pilot of the Dementia Lifestyle Coach program; an individual coaching and counselling program for people recently diagnosed with dementia, to help them to adjust to the diagnosis and live well.A randomised controlled pilot trial (n = 11) with wait-list control group was undertaken over 12 months. Intervention group participants received immediate personalised counselling from a registered psychologist and monthly support (face-to-face or by telephone) from a trained peer mentor living with dementia. The wait-listed control group commenced treatment 6 months after baseline.Recruitment and delivery of the Dementia Lifestyle Coach program was highly feasible. The program was acceptable, with nine of the 11 participants describing benefits including informational and emotional support, improving their outlook and mood, and family relationships. The planned program was adapted to participants' individual needs.This small pilot showed that it is feasible to recruit for and deliver a counselling and peer mentoring program for people recently diagnosed with dementia. A larger hybrid implementation randomised control trial should be conducted to evaluate efficacy and effectiveness.

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.

Refereed/Peer-reviewed Quality of life is a critically important outcome measure in aged care. However, few studies have provided a detailed examination of what quality of life means to older adults living in residential care. In the current study, N = 43 older adults (67 to 99 years) living in six residential aged care facilities in four Australian states took part in semi-structured interviews. Participants had normal cognition through to mild /moderate cognitive impairment as measured by the PAS-Cog, were able to provide informed consent, and could participate in an interview conducted in English. Interviews were transcribed, and data was analyzed in NVivo using thematic analysis. Both physical and psycho-social aspects were identified as important for older adults’ quality of life with six key quality of life domains identified: independence, mobility, pain management, social connections, emotional well-being, and activities. More research is needed to test these domains with a more diverse sample of older adults living in residential aged care, in particular older adults from culturally and linguistically diverse communities. Such qualitative work is essential for the development of suitable quality of life measures for this population and provides valuable information to inform improvements to care practices and service provision. Some ways in which the identified quality of life domains could be used to enhance care provision are discussed.

Objective: To describe the co-design process in a project that “evaluated how the key worker role can best support people living with dementia in the community setting.”. Methods: People with dementia, care-partners, aged-care service experts, policymakers and academics utilised a co-design process to undertake a systematic literature review and a qualitative evaluation study. Results: The development of a successful co-design process that includes people living with dementia and their care-partners (“consumers”) at all stages of the research process and addresses their individual needs. Conclusions: The co-design approach utilised in this project provided support, for consumers living in the community to be fully involved in the research design, conduct and plans for dissemination and implementation of the findings. Consequently, the research outcomes are based on solid evidence and consumer need. Additionally, a successful model for supporting consumers to facilitate their involvement in all aspects of the research process, was developed. Refereed/Peer-reviewed

This article responds to growing concerns in human rights practice and scholarship about confinement of people living with dementia in care homes. Moving beyond the existing focus in human rights scholarship on the role of restrictive practices in confinement, the article broadens and nuances our understanding of confinement by exploring the daily facilitators of confinement in the lives of people with dementia. The article draws on data from focus groups and interviews with people living with dementia, care partners, aged care workers and lawyers/advocates about Australian care homes. It argues that micro-level interrelated and compounding factors contribute to human rights abuses of people living with dementia related to limits on freedom of movement and community access of people living with dementia, at times irrespective of the use of restrictive practices. These factors include immobilisation and neglect of residents, limited and segregated recreational activities, concerns about duty of care and liability, apprehension of community exclusion, and pathologization and subversion of resistance. It is necessary to challenge the organisational, cultural, economic, and social dynamics that shape day-to-day, microlevel, routine and compounding factors that remove the agency of people living with dementia and in turn facilitate entrenched and systematic human rights breaches in care homes.

The aim of this study is to systematically review practitioners’ practices and attitudes in regards to communicating a diagnosis of dementia. A systematic search was conducted of Scopus, Web of Science and PubMed for English language original empirical papers. A sequential explanatory mixed studies analysis approach was used. Twenty-five quantitative descriptive, two intervention, six mixed methods descriptive and 21 qualitative studies were included. Pooled analysis showed that 34% of GPs and 48% of specialists usually/routinely tell the person with dementia their diagnosis, and 89% of GPs and 97% specialists usually/routinely tell the family the diagnosis. Euphemistic terms such as ‘memory problems’ are more often used to describe dementia than medical terms. Practitioners’ decision to diagnose and communicate the diagnosis of dementia are influenced by (a) their own beliefs regarding dementia and treatment efficacy and their confidence in diagnosis and communication; (b) patient circumstances including level of awareness, level of severity and family support; (c) the health and social care system including access to specialist and diagnostic services, reimbursement for diagnosis/management and availability of services and (d) cultural norms in relation to dementia including stigma, labels, and common clinical practice. The diagnosis and communication of diagnosis of dementia are intertwined processes and should be concurrently addressed in interventions. Multicomponent approaches to address these practices could include guideline development, practitioner education, anti-stigma public health campaigns, offering post-diagnosis treatments and support and sufficient reimbursement for practitioners for time spent managing dementia.

Jusqu’a une epoque tres recente, la demence n’etait pas consideree comme un handicap : elle etait vue uniquement comme le parcours conduisant vers un declin chronique et progressif et vers la mort. Et quand une personne recoit un diagnostic de demence, il y a le plus souvent une « prescription de desengagement » par rapport a la vie qui etait la sienne auparavant. Or, selon la Convention des Nations Unies sur les droits des personnes handicapees, toutes les personnes ayant des incapacites, y compris les personnes ayant une demence, doivent recevoir une compensation totale et proactive de leur handicap. L’acces a cette convention est l’une des demandes que j’ai faites en tant que presidente, premiere dirigeante et cofondatrice de Dementia Alliance International (la voix des personnes ayant une demence), lors de la premiere conference ministerielle sur la demence de l’Organisation mondiale de la sante, en mars 2015. Ce qui compte maintenant, c’est que les personnes vivant avec une demence dans le monde entier soient mises en situation d’user de leur droit incontestable d’avoir acces a cette convention, et a toutes les autres conventions des Nations Unies. Les droits de l’Homme sont essentiels pour proteger les interets des personnes vivant avec une demence dans le monde entier, car l’accompagnement dont beneficient actuellement la plupart des personnes ayant une demence serait regarde comme inacceptable dans tous les autres domaines de la sante et du handicap.

Human rights are increasingly being considered in Australian law reform and policy discussions on how to improve the circumstances of people living with dementia in care homes. This article enriches understanding of the views on human rights held by people living with dementia and those who support, advocate and care for them, in order to ensure that law and policy reforms that promote human rights can be meaningfully enjoyed in practice. Drawing on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates, this article argues that there is general support among stakeholders for human rights. However, this support was qualified by their acknowledgement of entrenched economic, cultural and sociolegal barriers to the recognition of human rights in the everyday lives of people living with dementia. The article concludes that urgent action is required to transform the cultural, economic and social drivers of ambivalence and resistance to dementia and human rights within aged care and the broader community Refereed/Peer-reviewed

This chapter highlights the importance of mainstreaming or including rights into policy and practice for dementia, and offers insights into why people with dementia must be seen and accorded the same rights as all other people with disabilities. The year 2012 also marked the publication of the report Dementia: a public health priority, which provided an authoritative overview of the impact of dementia worldwide and links to disability. The misperceptions and myths of dementia regularly mean that those diagnosed often have great difficulty in protecting their own rights, or of the rights of the person they are supporting with dementia. Members of Dementia Alliance International and people with dementia around the world are systematically proving this to be untrue. Brain LeBlanc writes candidly about the impact of the invisibility of our impairments, and therefore of having dementia. Brian is 57 years old and was diagnosed in October of 2014 with Alzheimer’s disease.

© The Author(s) 2019. Universities can promote social impact by developing a dementia literate workforce. The Dementia Enabling University Strategy utilised a knowledge translation framework in an Australian university to inspire and support academics to engage students and consider how their skills and knowledge could contribute to the creation of more supportive environments for people with dementia. Dementia Enabling University Strategy ran across eight disciplines: law, media, social sciences, public health, engineering, business, marketing and psychology and was successful in engaging university academics and students. However, a longer term strategy is needed to embed ‘dementia’ as core business to the university impact agenda.

IntroductionThe 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 analysisA 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 disseminationThe 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).

The coronavirus disease 2019 (COVID‐19) pandemic has led to reflections around reforming Australia’s health care system.1 In view of future reforms, this article is intended to provoke policy and clinical discussion regarding what an effective, efficient model of service delivery meeting the needs of people with dementia and their families may look like. The opinion presented here belongs to the members of the National Health and Medical Research Council (NHMRC) National Institute for Dementia Research Special Interest Group in Rehabilitation and Dementia.

Background and Objectives Multidisciplinary 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. Research Design and Methods Sixteen health professionals from a variety of settings and professional backgrounds were purposively sampled using maximum variation sampling. Semi-structured interviews were conducted to explore attitudes toward the care of people with dementia and beliefs about the feasibility and value of multidisciplinary rehabilitation in this population. Thematic analysis was used to identify themes. Results Participating clinicians acknowledged problems with existing dementia care pathways in Australia but rarely conceptualized rehabilitation as relevant to this pathway. Analyses yielded two main and related themes: (i) difficulty defining worthwhile outcomes of a rehabilitation program for people with dementia and (ii) perceived barriers to participation in this population. Clinicians felt that achievable outcomes for people with dementia were not sufficiently worthwhile for investment. Discussion and Implications Broader acceptance of multidisciplinary rehabilitation as relevant to dementia care will require a reframing of practice that both educates emerging health professionals regarding the outcomes that may be achievable for people with dementia and persuades staff to appreciate that the investment is worthwhile.

Background:Prescribed Disengagement® is the description of the post-diagnostic advice given to people after a diagnosis of dementia, which explicitly or implicitly suggests that the person should be slowing down or pulling back from activities. This results in isolation, loss of hope, self-esteem and self-identity, and threatens social health. This study aims to review whether Prescribed Disengagement® can be identified in the literature on subjective experiences of people living with early dementia.Methods:A systematic search was performed. Inclusion criteria were original empirical qualitative studies published in English that addressed the subjective experiences of living with a diagnosis of objectively defined early dementia. Thematic synthesis was undertaken.Results:Thirty-five papers involving 373 participants were included. Following a diagnosis, people with dementia struggled with self-identity, independence, control and status, activities, stigma, and how to view the future. Reactions in these areas ranged from active and positive to negative and passive. Many studies reported participants’ dissatisfaction with the way the diagnosis was communicated. There was insufficient information provided about dementia and limited treatments and support offered. The diagnosis process and post-diagnostic support may have contributed to disempowerment of the person with dementia, made it more difficult to accept the diagnosis, and exacerbated negative views and self-stigma around dementia.Conclusions:These results do not support the idea of Prescribed Disengagement®. However disengagement may have been implied during the diagnosis process and post-diagnostic support. Research is needed on how to improve the communication of dementia diagnosis and support people to live well post-diagnosis.

The incidence of dementia worldwide is rapidly increasing and Alzheimer’s Disease International (ADI) (2013) reported that ‘there 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’. In Australia, there are over 332,000 people diagnosed with dementia, with an estimated 1700 new diagnoses per week (Alzheimer’s 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’s 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.

Despite the importance and advantages of including people with dementia in research, there are various challenges for researchers and participants to their involvement. This article draws on the literature and experiences of a diverse group of authors, including a person with dementia, to provide recommendations about conducting research with people with dementia. Particular attention is given to in-depth interviews as a qualitative technique. More specifically, topics discussed include interview guide preparation, recruitment, obtaining consent/assent, conducting effective interviews, analysis and interpretation of data, effective communication of research findings, and reflections and recommendations for maintaining researcher and participant health. Given the current obstacles to participation in research of people with dementia, this is a timely article providing useful insights to promote improved outcomes using in-depth interviews.

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 ‘to give up work, give up study, and to go home and live for the time I had left’. By 2009, I had termed this Prescribed Dis-engagement, 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 ‘living’ for the time I had left? This Prescribed Dis-engagement sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive. Dementia is the only disease or condition and the only terminal illness that I know of where patients are told to go home and give up their pre-diagnosis lives, rather than to ‘fight for their lives’. The families and partners are also told they will have to give up work soon to become full time ‘carers’. Getting yourself acquainted with residential care is recommended. All of this advice is well-meaning, but based on a lack of education and misperceptions and myths about how people can live with dementia. This sets us up to live a life without hope or any sense of a future and destroys our sense of future well-being; it can mean the person with dementia behaves like a ‘victim’ or ‘sufferer’, and many times their care partner as a martyr. I was forced to give up paid employment after having my driver’s license revoked, but continued to study at university. If the symptoms of dementia had been seen as disabilities, my employer would have been legally obliged to find an alternative position, with the appropriate disability support. Studying meant I needed to use a lot of strategies to be productive, helped me remained focused on meaningful activities, and importantly, away from the focus of dementia. It increased my neuroplasticity and resilience and allowed me to define myself by something other than dementia. Thankfully, at university, people with

From the perspective of people with dementia, this chapter explains why an increasing number of people with dementia have advocated for the need for rehabilitation following a diagnosis. Dementia is a disability and rehabilitation is our legal and human right as part of postdiagnostic services and support. Rehabilitation for the symptoms of dementia is supported by good evidence and is a logical demand, which health-care professionals appear to be ignorant of or ignore. This chapter shares personal stories about the challenges faced by people with dementia, the rehabilitation some have managed to arrange and benefits in terms of quality of life, well-being, and possible slowing of dementia. This chapter highlights the importance of implementing rights into policy and practice for dementia. It offers insights into why people with dementia must be seen and accorded the same rights as all others living with any other acquired disabilities.