Reparations for people living with dementia: Recognition, accountability, change, now!

There is a significant and longstanding problem of harm to people living with dementia in long term care institutions ('LTC institutions', referred to by others as 'care homes', 'nursing homes', 'long term care', 'residential aged care facilities'), along with a failure to redress the harm or hold people accountable for this harm. This article reports on an Australian project that found reparations must be a response to harm to people living with dementia in residential aged care. Using a disability human rights methodology, focus groups were conducted with people living with dementia, care partners and family members, advocates and lawyers to explore perspectives on why and how to redress harm to people living with dementia in Australian LTC institutions. Researchers found four key themes provide the basis for the necessity and design of a reparative approach to redress - recognition, accountability, change, now. The article calls for further attention to reparations in dementia scholarship, with a particular focus on the role that can be played in the delivery of reparations by the LTC industry, dementia practitioners, and dementia scholars. Ultimately, this article provides a new understanding of responses to violence, abuse, neglect and other harms experienced by people living with dementia in LTC institutions, which centres justice, rights, and transformative change.

Dementia lifestyle coach pilot program.

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

"Missing Persons": Absent Voices of People with Dementia in the Australian Royal Commission into Aged Care.

This article argues the voice of people with dementia was missing from the Australian Royal Commission into Aged Care Quality and Safety (RCAC) Final Report. This absence was notwithstanding that the RCAC was explicitly tasked to inquire into dementia care. The RCAC Final Report is shown to marginalise the perspective and experience of people with dementia in the aged care system at the same time as prioritising substitute voices of experts, advocates, family and care partners. This absence of voice repeats and re-inscribes framing of people with dementia as "missing persons". Where people with dementia face practical and legal barriers to participate in civic and legal processes, the RCAC failed to adjust its methodologies to ensure their voices were "heard". The RCAC's re-inscription of marginalisation of people with dementia raises concerns for the legitimacy and success of its recommendations for dementia aged care reform.

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.

What quality of life domains are most important to older adults in residential care?

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.

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.

Creating a dementia enabling university using a Knowledge Translation approach: Innovative practice.

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.

Rehabilitation for people with dementia: a multi-method study examining knowledge and attitudes.

BACKGROUND: People with dementia are not routinely offered rehabilitation services despite experiencing disability associated with the condition and accumulating evidence for therapies such as exercise, occupational therapy, and cognitive or physical rehabilitation. It is important to understand the needs and preferences of people with dementia regarding rehabilitation services. The aim of this study was to explore thoughts and beliefs about rehabilitation amongst people with dementia and their families. METHODS: Interviews with people with dementia and family members regarding their experience of care following diagnosis and their attitudes and beliefs about rehabilitation for dementia. Surveys with older people with cognitive impairment and/or a diagnosis of dementia to determine preferences for services and understanding of rehabilitation programs. RESULTS: Interviews with 13 participants (n = 6 people living with dementia with mean age 60 and n = 7 care partners) revealed gaps in care post diagnosis. People reported having to seek out services and frequently sought out services which were rehabilitative in nature. Survey data (n = 91 participants, average age 82) showed that most people had heard of rehabilitation (92%) or had experience of rehabilitation (49%) at some point. There was a wide range of services identified as being beneficial. Rehabilitative interventions including case management, exercise and memory strategies were considered desirable. CONCLUSIONS: People with dementia report having a wide variety of needs. There are gaps following diagnosis where people with dementia report having to seek out their own services. Some interview participants (who tended to be younger) clearly articulated the need for tailored interventions which maximised independence and quality of life. Survey participants, who were on average older, reported that they would participate in individually applicable rehabilitative therapies if they were available.

Human Rights and the Confinement of People Living with Dementia in Care Homes.

This paper responds to growing concerns in human rights practice and scholarship about the 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 paper broadens and nuances our understanding of confinement by exploring the daily facilitators of confinement in the lives of people with dementia. The paper draws on data from focus groups and interviews with people living with dementia, care partners, aged care workers, and lawyers and advocates about Australian care homes. It argues that microlevel 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 immobilization 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 organizational, 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.

Health Professional Perspectives on Rehabilitation for People With 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.

Partnering with people with dementia and their care partners, aged care service experts, policymakers and academics: A co-design process.

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.

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).

Do people with early stage dementia experience Prescribed Disengagement®? A systematic review of qualitative studies.

ABSTRACTBackground: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.

Reflections and Recommendations for Conducting In-Depth Interviews With People With 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.