Promoting Independence Through Quality Dementia Care at Home (PITCH): An Australian Stepped-Wedge Cluster Randomised Controlled Trial Evaluating a Dementia Training Program for Home Care Workers.

OBJECTIVES: The primary aim of this pragmatic stepped-wedge cluster RCT was to determine the efficacy of a co-designed dementia specialist training program (the PITCH program) for home care workers (HCWs) to improve their confidence and knowledge when providing care for clients living with dementia. METHODS: HCWs who provided care to clients with dementia were recruited from seven home care service provider organisations in Australia between July 2019 and May 2022, and randomised into one of 18 clusters. The primary outcome was HCW's sense of self-competence in providing care services to people living with dementia at 6 months post PITCH training measured by the Sense of Competence in Dementia Care Staff (SCIDS) Scale. RESULTS: Two hundred and thirteen HCWS completed baseline assessment and almost half (48.4%) completed all three study assessments. HCWs in clusters that received PITCH training had significantly higher sense of competence (measured by SCIDS) than those who had not received PITCH training. Post hoc analysis revealed that face-to-face PITCH training consistently resulted in improvements in the HCWs sense of competence, dementia attitudes and knowledge when compared to online training and when compared to no training. PITCH training had no effect on the sense of strain HCWs felt in delivering dementia care. CONCLUSIONS: Given the majority of care for people living with dementia is provided at home by family carers supported by HCWs, it is essential that HCWs receive training that improves their skills in dementia care. This study is an important step towards better care at home for people living with dementia.

The Right to Rehabilitation for People With Dementia: A Codesign Approach to Barriers and Solutions.

INTRODUCTION: People with dementia of all ages have a human right to equal access to quality health care. Despite evidence regarding its effectiveness, many people living with dementia are unable to access rehabilitation for promoting function and quality of life. Conducted in Australia, this study was designed to (1) explore barriers to access to dementia rehabilitation and (2) identify solutions that improve access to rehabilitation. METHODS: People living with dementia (n = 5) and care partners (n = 8) and health professionals (n = 13) were recruited nationally. Experience-based codesign across three virtual workshops was used to understand barriers and design solutions to improve access to rehabilitation treatments. Socio-ecological analyses, using the Levesque Access to Health care framework, were applied to findings regarding barriers and to aid selection of solutions. RESULTS: There was high attendance (92.3%) across the three workshops. Barriers were identified at a user level (including lack of knowledge, transport, cost and difficulty navigating the health, aged care and disability sectors) and health service level (including health professional low dementia knowledge and negative attitudes, inequitable funding models and non-existent or fragmented services). Solutions focused on widespread dementia education and training, including ensuring that people with dementia and their care partners know about rehabilitation therapies and that health professionals, aged care and disability co-ordinators know how to refer to and deliver rehabilitation interventions. Dementia care navigators, changes to Australia's public funding models and specific dementia rehabilitation programmes were also recommended. CONCLUSIONS: Barriers to accessing rehabilitation for people with dementia exist at multiple levels and will require a whole-community and systems approach to ensure change. PATIENT OR PUBLIC CONTRIBUTION: People with living experience (preferred term by those involved) were involved at two levels within this research. A Chief Investigator living with dementia was involved in the design of the study and writing of the manuscript. People with living experience, care partners and service providers were participants in the codesign process to identify barriers and design potential solutions.

Moving forward with dementia: an explorative cross-country qualitative study into post-diagnostic experiences.

OBJECTIVES: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. METHOD: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. RESULTS: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. CONCLUSION: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.

Experiences of people with dementia and informal caregivers with post-diagnostic support: Data from the international COGNISANCE study.

OBJECTIVES: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. METHODS: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. RESULTS: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. CONCLUSIONS: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.

Psychiatric service delivery for older people in hospital and residential aged care: An updated systematic review.

OBJECTIVE: To review studies reporting on the effectiveness of psychiatry service delivery for older people and people with dementia in hospital and residential aged care. METHODS: A systematic search of four databases was conducted to obtain peer-reviewed literature reporting original research published since June 2004 evaluating a psychiatry service for older people (aged 60 years and over) or people with dementia in inpatient or residential aged care settings. RESULTS: From the 38 included studies, there was consistent low-to-moderate quality evidence supporting the effectiveness of inpatient older persons' mental health wards (n = 14) on neuropsychiatric symptoms, mood, anxiety and quality of life. Inpatient consultation/liaison old age psychiatry services (n = 9) were not associated with improved depression, quality of life or mortality in high-quality randomised studies. However, low-quality evidence demonstrated improved patient satisfaction with care and reduced carer stress. The highest quality studies demonstrated no effect of psychiatric in-reach services to residential aged care (n = 9) on neuropsychiatric symptoms but a significant reduction in depressive symptoms among people with dementia. There was low-quality evidence that long-stay intermediate care wards (n = 6) were associated with reduced risk for dangerous behavioural incidents and reduced costs compared to residential aged care facilities. There was no effect of these units on neuropsychiatric symptoms or carer stress. CONCLUSIONS AND IMPLICATIONS: The scarcity of high-quality studies examining the effectiveness of old age psychiatry services leaves providers and policy-makers to rely on low-quality evidence when designing services. Future research should consider carefully which outcomes to include, given that staff skill and confidence, length of stay, recommendation uptake, patient- and family-reported experiences, and negative outcomes (i.e. injuries, property damage) are as important as clinical outcomes.

Forward with Dementia: process evaluation of an Australian campaign to improve post-diagnostic support.

BACKGROUND: Forward with Dementia is a co-designed campaign to improve communication of dementia diagnosis and post-diagnostic support. METHODS: Webinars, a website, social and traditional media, and promotions through project partners were used to disseminate campaign messages to health and social care professionals (primary audience) and people with dementia and carers (secondary audience). The campaign ran between October 2021 and June 2022, with 3-months follow-up. The RE-AIM framework was used for process evaluation. Measurements included surveys and interviews, a log of activities (e.g. webinars, social media posts) and engagements (e.g. attendees, reactions to posts), and Google Analytics. RESULTS: There were 29,053 interactions with campaign activities. More than three-quarters of professionals (n = 63/81) thought webinars were very or extremely helpful. Professionals and people with dementia and carers reported that the website provided appropriate content, an approachable tone, and was easy to use. Following campaign engagement, professionals planned to (n = 77/80) or had modified (n = 29/44) how they communicated the diagnosis and/or provided post-diagnostic information and referrals. Qualitative data suggested that the campaign may have led to benefits for some people with dementia and carers. CONCLUSIONS: Forward with Dementia was successful in terms of reach, appropriateness, adoption and maintenance for professionals, however flow-through impacts on people with dementia are not clear. Targeted campaigns can potentially change health professionals' communication and support around chronic diseases such as dementia.

Promoting meaningful engagement for residents living with dementia through intergenerational programs: a pilot study.

OBJECTIVES: Residents living with dementia in residential aged care facilities (RACFs) have reduced access to, and opportunities for, participation in meaningful activities. This leads to increased social isolation and disengagement. Intergenerational programs aim to overcome these issues. Allied health students piloted a live-intergenerational program (LIP), living onsite at a residential aged care facility (RACF) while volunteering for 30 h a month. The purpose of this study was to explore the impact and practicalities for implementing a LIP in an Australian RACF. METHODS: This qualitative descriptive pilot study was undertaken to explore the diverse perspectives of various stakeholders. Qualitative data were collected during group discussions directed by the nominal group technique with live-in-students. Interviews were conducted with staff members, relatives, facility management and volunteers. All qualitative data were analysed thematically. RESULTS: Two overarching themes emerged. The first, community of care, indicated how care partners and the care context, organisational support and being a live-in-student supported the sustainability of the program. Live-in-students' accessibility promoted opportunities for occupational and social engagement of residents when staff was less available. The second, a collective based on belonging and shared doing, highlighted the program's potential impact and uncovered the development of a collective based on shared belonging. CONCLUSION: The LIP highlighted the potential for new dimensions to person-centred care. The pilot study demonstrated intergenerational contact within aged residential care supported the evolvement of a collective and promoted a social approach for ageing well. Further research is needed to identify the long-term impact of the LIP and explore the feasibility of expanding the program.

Barriers and enablers to the delivery and implementation of the tailored activity programme in Australia: Perspectives of occupational therapists and their managers.

BACKGROUND: Prior to implementing new programmes or practices, it is essential to understand the context, barriers and enablers to support successful use. The tailored activity programme (TAP) is an evidence-based intervention provided by occupational therapists to support community-dwelling people living with dementia and their carers. The programme was developed in the United States, and although it is not currently available for routine use in Australia, its implementation would address the needs of many Australians with dementia and their carers. AIM: The aim of the study is to understand the perspectives of occupational therapists and their managers regarding barriers and enablers to the delivery and implementation of the TAP in Queensland, Australia. METHODS: A qualitative descriptive methodology was employed. Semistructured interviews were undertaken with occupational therapists (n = 18) who work with community-dwelling people with dementia and their carers, and their managers (n = 10). Participants were recruited from a range of organisations across Queensland, and they were asked about potential barriers and enablers to implementing TAP. Interviews were recorded and transcribed verbatim. Data were mapped using framework analysis whilst remaining open to other themes. FINDINGS: Themes were identified, and facilitating factors included the close alignment of TAP with occupational therapists' scope of practice; their acceptance of, and optimism about the programme and its perceived benefits including improved client outcomes; and an opportunity for occupational therapists to further develop their skills. Managerial support and carers' readiness and willingness to participate were also identified as important factors for success, whereas barriers were cost to clients and the capacity of the occupational therapy workforce to provide TAP. CONCLUSION: Occupational therapists and their managers expressed enthusiasm for TAP and awareness of its likely benefits, while also identifying barriers that will need to be addressed if implementation of the programme is to be successful in Australia.

Characterising trauma-informed aged care: An appreciative inquiry approach.

OBJECTIVE: While Trauma-informed care (TIC) has the potential to improve the quality of aged and dementia care, the challenge remains in translating the principles of TIC into practice. This study aimed to characterise what trauma-informed aged care looks like in practice, by learning from an aged care service acknowledged as delivering trauma-informed aged care effectively. METHOD: We conducted an appreciative inquiry study within a residential aged care service catering for veterans and others with trauma histories. Observation of care behaviours, interviews with staff and residents, and organisational policy mapping were used to identify elements that maximised care safety and accessibility for trauma survivors. Data were analysed and triangulated using a framework analysis approach. RESULTS: The aged care provider embedded the principles of TIC into its staff training (i) to promote understanding of how trauma may affect experiences in care, and (ii) to adapt care when appropriate to promote safety. The service promoted a calm atmosphere where residents could make choices and felt safe. Uniforms and signage provided consistency, clarity, and transparency for residents. Staff behaviours demonstrated respect, fostered trust, and anticipated needs without unnecessarily imposing care. Staff consistently offered choices, used residents' names, sought permission before providing care, and offered reassurance. Staff reported high morale with a commitment to delivering high quality care, and feedback to management. Effective communication promoted information sharing and trust among staff. CONCLUSION: Trauma-informed practice was facilitated through organisational policy, a dignified environment, and thoughtful staff behaviour creating safety, choice, and control for residents.

Characterising Australian memory clinics: current practice and service needs informing national service guidelines.

BACKGROUND: Memory clinics (MCs) play a key role in accurate and timely diagnoses and treatment of dementia and mild cognitive impairment. However, within Australia, there are little data available on current practices in MCs, which hinder international comparisons for best practice, harmonisation efforts and national coordination. Here, we aimed to characterise current service profiles of Australian MCs. METHODS: The 'Australian Dementia Network Survey of Expert Opinion on Best Practice and the Current Clinical Landscape' was conducted between August-September 2020 as part of a larger-scale Delphi process deployed to develop national MC guidelines. In this study, we report on the subset of questions pertaining to current practice including wait-times and post-diagnostic care. RESULTS: Responses were received from 100 health professionals representing 60 separate clinics (45 public, 11 private, and 4 university/research clinics). The majority of participants were from clinics in metropolitan areas (79%) and in general were from high socioeconomic areas. While wait-times varied, only 28.3% of clinics were able to offer an appointment within 1-2 weeks for urgent referrals, with significantly more private clinics (58.3%) compared to public clinics (19.5%) being able to do so. Wait-times were less than 8 weeks for 34.5% of non-urgent referrals. Only 20.0 and 30.9% of clinics provided cognitive interventions or post-diagnostic support respectively, with 7.3% offering home-based reablement programs, and only 12.7% offering access to group-based education. Metropolitan clinics utilised neuropsychological assessments for a broader range of cases and were more likely to offer clinical trials and access to research opportunities. CONCLUSIONS: In comparison to similar countries with comprehensive government-funded public healthcare systems (i.e., United Kingdom, Ireland and Canada), wait-times for Australian MCs are long, and post-diagnostic support or evidence-based strategies targeting cognition are not common practice. The timely and important results of this study highlight a need for Australian MCs to adopt a more holistic service of multidisciplinary assessment and post-diagnostic support, as well as the need for the number of Australian MCs to be increased to match the rising number of dementia cases.

What constitutes 'good' home care for people with dementia? An investigation of the views of home care service recipients and providers.

BACKGROUND: Our objective was to explore what people receiving and providing care consider to be 'good' in-home care for people living with dementia. METHODS: We conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke's six-step approach. RESULTS: Consensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers' understanding of dementia and its impact; 2) Home care workers' demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers' knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers. CONCLUSIONS: It is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services. TRIAL REGISTRATION: ACTRN 12619000251123 .

Creating 'Partnership in iSupport program' to optimise family carers' impact on dementia care: a randomised controlled trial protocol.

BACKGROUND: The majority of people with dementia are cared for by their family members. However, family carers are often unprepared for their caring roles, receiving less education and support compared with professional carers. The consequences are their reduced mental and physical health and wellbeing, and that of care recipients. This study protocol introduces the 'Partnership in iSupport program' that includes five interventional components: managing transitions, managing dementia progression, psychoeducation, carer support group and feedback on services. This health services research is built on family carer and dementia care service provider partnerships. The aims of the study are to evaluate the effectiveness, cost-effectiveness and family carers' experiences in the program. METHODS: A multicentre randomised controlled trial will be conducted with family carers of people living with dementia from two tertiary hospitals and two community aged care providers across three Australian states. The estimated sample size is 185 family carers. They will be randomly assigned to either the intervention group or the usual care group. Outcomes are measurable improvements in quality of life for carers and people with dementia, caregiving self-efficacy, social support, dementia related symptoms, and health service use for carers and their care recipients. Data will be collected at three time points: baseline, 6 months and 12 months post-initiation of the intervention. DISCUSSION: This is the first large randomised controlled trial of a complex intervention on health and social care services with carers of people living with dementia in real-world practice across hospital and community aged care settings in three Australian states to ascertain the effectiveness, cost-effectiveness and carers' experiences of the innovative program. We expect that this study will address gaps in supporting dementia carers in health and social care systems while generating new knowledge of the mechanisms of change in the systems. Findings will strengthen proactive health management for both people living with dementia and their carers by embedding, scaling up and sustaining the 'Partnership in iSupport program' in the health and social care systems. TRIAL REGISTRATION: The Australian New Zealand Clinical Trials Registry (ANZCTR). ACTRN12622000199718 . Registered February 4th, 2022.

Optimising social conditions to improve autonomy in communication and care for ethnic minority residents in nursing homes: A meta-synthesis of qualitative research.

A large proportion of nursing home residents in developed countries come from ethnic minority groups. Unmet care needs and poor quality of care for this resident population have been widely reported. This systematic review aimed to explore social conditions affecting ethnic minority residents' ability to exercise their autonomy in communication and care while in nursing homes. In total, 19 studies were included in the review. Findings revealed that ethno-specific nursing homes create the ideal social condition for residents to express their care needs and preferences in a language of choice. In nonethno-specific nursing homes, staff cultural competence and nursing home commitment to culturally safe care are crucial social conditions that enable this group of residents to fulfil their autonomy in communicating and in participating in their care. In contrast, social conditions that undermine residents' ability to express their care needs and preferences include low levels of staff cultural awareness and cultural desire, negative attitudes towards residents and limited organisational support for staff to improve culturally responsive and culturally safe care. In conclusion, it is important to optimise the social conditions to support ethnic minority residents to communicate their care needs and preferences.

A Safe Mobilisation Program to Improve Functional Mobility and Reduce Fall Risks in Cognitively Impaired Older Adults with Higher Level Gait Disorders: A Pilot Study.

BACKGROUND: The association between gait and cognition, and their combined impact on postural stability may underlie the increased fall risk in older adults with dementia. However, there are few interventions to improve functional mobility and reduce fall risks in people with cognitive impairment. OBJECTIVES: This study aims to investigate the feasibility and acceptability of a Safe Mobilisation Program for cognitively impaired older adults with higher level gait disorders. It also explores the potential effectiveness of the program on mobility and fall risks. METHODS: Fifteen community-dwelling older adults participated in a 3-week pre-post intervention study. They were trained to take steady steps in transfers and mobilization using errorless learning and spaced retrieval teaching techniques. RESULTS: The intervention program was feasible, all the participants completed the program and were able to mobilize safely. The program was acceptable and participants reported an increase in safety awareness, improvement in confidence while transferring and mobilising, and better quality of life. There was a trend of improvement in Falls Efficacy Scale-international (FES-I), 360° turn and Tinetti Performance Oriented Mobility Assessment (POMA), which may indicate improvement in balance and mobility. CONCLUSION: The Safe Mobilisation Program was feasible and acceptable in older adults with cognitive impairment and gait disorders and warrants further evaluation.

Perspectives of operational staff working in residential care and aged care reforms.

Australia is undergoing major aged care reforms, changing from the previous service provider-driven approach to consumer-directed care principles. In residential aged care, this has resulted in a significant reduction in government funding in order to support reform initiatives in home and community-based care. There has been limited research on the impact of structural aspects of the reforms such as the effect of changes in funding focus. Using a qualitative descriptive research methodology, this study explores the impact of the reforms on staff at various levels of operational responsibility in residential aged care. Issues identified by participants centered on the capacity to deliver care in three areas, the impact of funding reduction, challenges in meeting increasingly complex needs of residents and their families, and new requirements for care roles within current limitations. This paper provides an insight into how and why operational issues have informed the findings of the current Australian Royal Commission into Aged Care Quality and Safety. It identifies areas of support for the aged care workforce that are crucial in fulfilling consumer-focused care delivery.

The residential environment impact scale: Benefits and barriers to implementation in the Australian residential aged care facility context.

The organisational, physical and social environment within residential aged care settings greatly influence its residents' sense of autonomy, choice and control and their ability to engage in meaningful occupations. Identifying to what extent these environmental contexts are supportive and well-coordinated could assist with promoting meaningful engagement of residents. The Residential Environment Impact Scale (REIS) was developed to measure the impact of the physical and social environment on residents. This study examined the benefits and barriers to implementing the REIS in four Australian Residential Aged Care Facilities (RACFs) and factors to consider during implementation. METHOD: A multisite sequential mixed-methods study was conducted. Research participants included occupational therapists conducting the REIS and leadership staff examining the REIS reports in four facilities. Data consisted of formal observations of the REIS assessment process, an online survey of all participants and two research consensus groups. Qualitative findings were generated from field notes, open-ended survey questions and group discussions. Close-ended survey questions provided quantitative data. FINDINGS: The REIS was considered a useful audit tool, generating a holistic overview of the RACF. It highlighted the quality of person-centred care and the potential role of occupational therapists to promote opportunities for meaningful occupational engagement. Barriers included administration time, personal characteristics of residents and limited resources to action recommendations. CONCLUSION: The REIS has potential to be an audit tool for a whole-environment approach to facility assessment of residents' sense of autonomy, occupational choice and meaningful engagement. As such, it provides occupational therapists with scope to support RACFs meeting national quality standards.

Clustering and Additive Effects of Nongenetic Risk Factors in Non-Autosomal-Dominant Degenerative and Vascular Young Onset Dementia.

INTRODUCTION: Both genetic and nongenetic factors contribute to the risk profile of young onset dementia (YOD), but risk factors often co-occur. This matched case-control study examined whether nongenetic risk factors cluster together, to inform targeted prevention efforts. METHODS: Ninety-six participants with non-autosomal-dominant degenerative and/or vascular YOD and 175 controls were recruited to 2 Australian epidemiological studies. Risk exposure was retrospectively self-reported and/or informant-reported. RESULTS: Each additional exposure increased the risk for YOD, though only where vascular dementia was included in the analysis. Cluster analysis identified 4 risk groups, one of which reported a high probability of exposure to all risks and a significantly higher risk for YOD. DISCUSSION: Results suggest that combinations of nongenetic risk factors confer more risk for young onset vascular dementia, and possibly primary degenerative YOD, than a single factor on its own. Compared with their same-age peers, some people with YOD experience a lifetime of risk exposure starting from early in life.

Negative stereotypes, fear and social distance: a systematic review of depictions of dementia in popular culture in the context of stigma.

BACKGROUND: Literature, film and news media reflect and shape social perceptions of dementia which in turn impact on dementia stigma. The aim of this paper is to systematically review papers on the depiction and frames for dementia in literature, film, mass media and social media in order to better understand cultural stigma related to dementia. METHODS: A systematic search of electronic databases was undertaken combining phrases relating to dementia, popular culture and representations, and phrases relating to dementia and stigma. We searched for scientific English language papers which included original analysis on the representation or depiction of dementia in popular culture (i.e. in film and television, literature, news, social media and language). Articles published between 1989-2018 were included. The search was conducted in December 2017 and updated in January 2019. Inductive thematic synthesis was undertaken. RESULTS: A total of 60 articles were included from an initial sample of 37022. Dementia was almost always depicted in conjunction with ageing, and often equated with Alzheimer's disease. Common frames for dementia were biomedical - dementia involves the deterioration of the brain for which there is no current cure; natural disaster or epidemic - dementia is a force of nature which will overwhelm mankind; and living dead - people with dementia lose their brains, memories, minds and consequently their personhood and human rights. There were examples of more positive depictions of dementia including expressing love and individual agency and experiencing personal growth. Feelings commonly associated with dementia were fear, shame, compassion and guilt, and depictions often resulted in a sense of social distance. CONCLUSIONS: Depictions of dementia in popular culture are associated with negative images and feelings, and social distance between people with dementia and those without. These correspond to dementia stigma in the public and as experienced by people with dementia. Further research is needed into the impact of literature, news and social media on dementia stigma and these cultural mediums might be used to reduce stigma.

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.

Feasibility and potential effects of interdisciplinary home-based reablement program (I-HARP) for people with cognitive and functional decline: a pilot trial.

Objectives: To test feasibility and potential effects of the interdisciplinary Home-bAsed Reablement Program (I-HARP) that integrates evidence-based strategies and cognitive rehabilitation techniques into a dementia-specific, bio-behavioural-environmental intervention.Methods: A parallel-group randomised controlled pilot trial was conducted in Sydney, Australia, targeting community-dwelling people with amnestic mild cognitive impairment or mild/moderate stages of dementia and their carer (n = 18 dyads). I-HARP comprised: up to 12 home visits by registered nurse, occupational therapist, and psychologist, tailored to the individual client's needs;