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Background and Objectives Personal care interactions can provide vital opportunities for caregivers to engage with a person living with advanced dementia. However, interactions may also be a contentious experience, what makes this so is not fully understood. We aimed to examine features of personal care interactions between caregivers and people with advanced dementia to understand how care may be improved. Research Design and Methods This was a naturalistic observation study using one-off video-recorded observations of personal care interactions between 14 people with advanced dementia and 12 caregivers (n = 7 care-home staff, n = 5 family carers) in the United Kingdom (total observation time 03:01:52). Observations were analyzed with observational video coding to determine the frequency of actions of people with dementia and qualitative content analysis for in-depth examination. Results Refusals of care were present in 32% of video sections. Active engagement of people with dementia was observed in 66% of sections. Rare contentious interactional components were characterized by the person with dementia appearing to show uneasiness and caregivers being flustered and uncertain. However, caregivers typically emanated a nurturing attentiveness, were attuned to the person, and skilled in seamlessly supporting them through care activities. Discussion and Implications Findings draw on real-world empirical evidence to reinvigorate the notion of person-centeredness in dementia care. The findings provide much needed insight into practical ways to improve care interactions for people with advanced dementia and enhance their personhood. Appropriate training/guidance for caregivers could support positive personal care experiences for both the person with dementia and caregiver. [ABSTRACT FROM AUTHOR]

This study explores the usability, usefulness and user experience of the Forward with Dementia website for people with dementia and family carers, and identifies strategies to improve web design for this population. The website was iteratively user-tested by 12 participants (five people with dementia, seven carers) using the Zoom platform. Data collection involved observations, semi-structured interviews and questionnaires. Integrative mixed-method data analysis was used, informed by inductive thematic qualitative analysis. Users of Version 1 of the website experienced web functionality, navigation and legibility issues. Strategies for desirable web design were identified as simplifying functions, streamlining navigation and decluttering page layouts. Implementation of strategies produced improvements in usability, user experience and usefulness in Version 2, with mean System Usability Scale scores improving from 15 to 84, and mean task completion improving from 55% to 89%. The user journey for people with dementia and carers overlapped, but each group had their own unique needs in the context of web design. The interplay between a website's content, functionality, navigation and legibility can profoundly influence user perceptions of a website. Dementia-related websites play an important role in informing audiences of management strategies, service availability and planning for the progression of dementia. Findings of this study may assist in guiding future web development targeting this population. People with cognitive impairment can provide useful feedback on design and accessibility of websites, and their input should be obtained when developing digital applications for this group. This paper provides practical suggestions for website design features to improve function, legibility and navigation of websites for older people and people living with dementia. [ABSTRACT FROM AUTHOR]

Volunteer motivation has been researched in HCI in several application domains. However, motivational complexities of digital volunteerism in science-based domains, such as medical research are under-explored, especially when involving volunteers with marginalized identities. We aim to study the socio-technical complexities of voluntary participation in a digital science-based research platform and propose recommendations to enhance volunteer motivation. We describe a survey study of volunteers on Step-Up for Dementia Research platform (n = 266) to capture nuances in their demographics, experiences, motivations, well-being, and psychological needs. Our findings reveal the features that facilitate or impede sustainable volunteer participation and the 5 identities based on which volunteers derive meaning from their work. We propose 8 recommendations to navigate the digital divide and foster inclusion, build wider participation by engaging with the social construction of volunteering and focusing on prosocial values, and enhance volunteer well-being by fulfilling their cognitive, emotional, and psychological needs. [ABSTRACT FROM AUTHOR]

Background and Objectives As part of the WHO Rehabilitation 2030 call for action, the WHO Rehabilitation Programme is developing its Package of Interventions for Rehabilitation (PIR) to support ministries of health around the globe in integrating rehabilitation services into health systems. As a vital step for this PIR development, we conducted a systematic review of clinical practice guidelines (CPGs) for dementia to identify interventions for rehabilitation and related evidence. Research Design and Methods Following WHO Rehabilitation Programme and Cochrane Rehabilitation's methodology, quality CPGs published in English between January 2010 and March 2020 were identified using PubMed, Embase, CINAHL, PEDro, Google Scholar, guideline databases, and professional society websites. Guideline quality was assessed using the Appraisal of Guidelines for Research and Evaluation (II). Results Of the 22 CPGs that met the selection criteria, 6 satisfied the quality evaluation. Three hundred and thirty rehabilitation-related recommendations were identified, mostly concentrated in the areas of cognition, emotion, and carer support. There were many strong interventions, with moderate- to high-quality evidence that could be easily introduced in routine practice. However, major limitations were found both in the quality of evidence and scope, especially in areas such as education and vocation, community and social life, and lifestyle modifications. Discussion and Implications Further rigorous research is needed to build quality evidence in dementia rehabilitation in general, and especially in neglected areas for rehabilitation. Future work should also focus on the development of CPGs for dementia rehabilitation. A multipronged approach is needed to achieve Universal Health Coverage for dementia rehabilitation. [ABSTRACT FROM AUTHOR]

Introduction: Psychosocial dementia interventions may be less effective when used with populations for whom they were not initially intended. Cultural adaptation of interventions aims to increase effectiveness of interventions by enhancing cultural relevance. Use of theoretical frameworks may promote more systematic cultural adaptation. The aim of this review was to provide a comprehensive synthesis of published cultural adaptation frameworks for psychosocial interventions to understand important elements of cultural adaptation and guide framework selection. Method: Five scientific databases, grey literature and reference lists were searched to January 2023 to identify cultural adaptation frameworks for psychosocial interventions. Papers were included that presented cultural adaptation frameworks for psychosocial interventions. Data were mapped to the framework for reporting adaptations and modifications to evidence-based interventions, then analysed using thematic synthesis. Results: Twelve cultural adaptation frameworks met inclusion criteria. They were mostly developed in the United States and for adaptation of psychological interventions. The main elements of cultural adaptation for psychosocial interventions were modifying intervention content, changing context (where, by whom an intervention is delivered) and consideration of fidelity to the original intervention. Most frameworks suggested that key intervention components must be retained to ensure fidelity, however guidance was not provided on how to identify or retain these key components. Engagement (ways to reach and involve recipients) and cultural competence of therapists were found to be important elements for cultural adaptation. Conclusions: Comprehensive frameworks are available to guide cultural adaptation of psychosocial dementia interventions. More work is required to articulate how to ensure fidelity during adaptation, including how to identify and retain key intervention components. [ABSTRACT FROM AUTHOR]

Objectives To examine factors contributing to delaying care home admission; and compare the rates of care home admission and cost consequence between two government subsidised programmes, Veterans' Affairs Community Nursing (VCN) and Home Care Package (HCP). Methods Our national, population-based retrospective cohort study and cost analysis used existing, de-identified veterans' claims databases (2010–19) and the Registry of Senior Australians Historical Cohort (2010–17), plus aggregate programme expenditure data. This involved 21,636 VCN clients (20,980 aged 65–100 years), and an age- and sex-matched HCP cohort (N  = 20,980). Results Service factors associated with lower risk of care home admission in the VCN cohort were periodic (versus continuous) service delivery (HR 0.27 [95%CI, 0.24–0.31] for ≤18 months; HR 0.89 [95%CI, 0.84–0.95] for >18 months), and majority care delivered by registered nurses (versus personal care workers) (HR 0.86 [95%CI, 0.75–0.99] for ≤18 months; HR 0.91 [95%CI, 0.85–0.98] for >18 months). In the matched cohorts, the time to care home admission for VCN clients (median 28 months, IQR 14–42) was higher than for HCP clients (14, IQR 6–27). Within 5 years of service access, 57.6% (95%CI, 56.9–58.4) of HCP clients and 26.6% (95%CI, 26.0–27.2) of VCN clients had care home admission. The estimated cost saving for VCN recipients compared to HCP recipients over 5 years for relevant government providers was over A$1 billion. Conclusions Compared to an HCP model, individuals receiving VCN services remained at home longer, with potentially significant cost savings. This new understanding suggests timely opportunity for many countries' efforts to enhance community-based care services. [ABSTRACT FROM AUTHOR]

Introduction: Long term opioids are commonly prescribed to manage pain. Dose reduction or discontinuation (deprescribing) can be challenging, even when the potential harms of continuation outweigh the perceived benefits. The Evidence‐based clinical practice guideline for deprescribing opioid analgesics was developed using robust guideline development processes and Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology, and contains deprescribing recommendations for adults prescribed opioids for pain. Main recommendations: Eleven recommendations provide advice about when, how and for whom opioid deprescribing should be considered, while noting the need to consider each person's goals, values and preferences. The recommendations aim to achieve: implementation of a deprescribing plan at the point of opioid initiation;initiation of opioid deprescribing for persons with chronic non‐cancer or chronic cancer‐survivor pain if there is a lack of overall and clinically meaningful improvement in function, quality of life or pain, a lack of progress towards meeting agreed therapeutic goals, or the person is experiencing serious or intolerable opioid‐related adverse effects;gradual and individualised deprescribing, with regular monitoring and review;consideration of opioid deprescribing for individuals at high risk of opioid‐related harms;avoidance of opioid deprescribing for persons nearing the end of life unless clinically indicated;avoidance of opioid deprescribing for persons with a severe opioid use disorder, with the initiation of evidence‐based care, such as medication‐assisted treatment of opioid use disorder; anduse of evidence‐based co‐interventions to facilitate deprescribing, including interdisciplinary, multidisciplinary or multimodal care. Changes in management as a result of these guidelines: To our knowledge, these are the first evidence‐based guidelines for opioid deprescribing. The recommendations intend to facilitate safe and effective deprescribing to improve the quality of care for persons taking opioids for pain. [ABSTRACT FROM AUTHOR]

Objectives: This study aims to explore the journey to dementia diagnosis and reaction to the diagnosis from the perspective of people with young-onset dementia living in the community from diverse areas in Australia (metropolitan, regional, rural) and their family caregivers. Methods: Semi-structured interviews were conducted with community-dwelling people with early to moderate young-onset Alzheimer's disease (n = 8) or frontotemporal dementia (n = 5) and one person with both Alzheimer's disease and frontotemporal dementia, and family caregivers of community-dwelling people with young-onset Alzheimer's disease and/or frontotemporal dementia (n = 28). This study employed interpretive description. Thematic analysis was conducted for emergent themes, comparisons and interplay between themes. Findings: The journey to the diagnosis is characterised as involving an extensive period of the gradual worsening of symptoms, drawn out investigations, and difficulties facing the prospect of a diagnosis of young-onset dementia. Participants with young-onset dementia struggled to manage their symptoms and the process of seeking a diagnosis was often slow due to difficulties during the course of their medical investigations and feeling reluctance to face the possibility of having dementia. Once participants finally received the diagnosis of young-onset dementia, participants with young-onset dementia and their family caregivers experienced feelings of devastation and shock, in some cases denial and avoidance, and even, confirmation and relief at having received a diagnosis. In some instances, participants experienced more than one of these reactions. There was a profound realisation by participants that a diagnosis of young-onset dementia had serious implications on their life and future. Conclusion: The journey to diagnosis was found to be a drawn-out process and receiving the diagnosis was a shock for both people with young-onset dementia and their family caregivers. The findings highlight the significance of the role healthcare professionals play in both the diagnostic and post-diagnostic journey, particularly in terms of supporting patients with young-onset dementia and their family caregivers. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: Advance planning for research is a process that involves thinking about, discussing and expressing preferences for taking part in research during future periods of incapacity. The process may include making an advance research directive and naming trusted people to be involved in decisions about research participation. Advance research planning could help to overcome barriers to including people with dementia in research. To encourage innovation in this area, this article presents recommendations informed by a stakeholder workshop that brought together consumer representatives and representatives active in dementia, ageing and health‐related research, policy‐making, advocacy and service delivery in health and aged care. Methods: An online workshop where 15 stakeholders shared perspectives and suggestions for implementing advance research planning, with a focus on research involving people with dementia. Results: Raising awareness of advance research planning requires multi‐faceted strategies. Training and resources are needed for researchers, ethics committees and organisations regarding this form of advance planning and the use of research directives. Like any form of advance planning, planning ahead for research must be a voluntary, informed and person‐centred process. There is a lack of uniform legal rules on research involving people who lack the capacity to consent; however, advance research directives could, in principle, inform decisions about research participation. Conclusions: As a matter of law, policy and practice, people are encouraged to plan ahead in many areas of their life. Research planning has been relatively neglected, and the recommendations offered here aim to encourage innovation in research and implementation in this area. [ABSTRACT FROM AUTHOR]

Objectives: Informal carers play a critical role in supporting people with dementia. We conducted a scoping review and a qualitative study to inform the identification and development of carer‐reported measures for a dementia clinical quality registry. Methods: Phase 1—Scoping review: Searches to identify carer‐reported health and well‐being measures were conducted in three databases (MEDLINE, PsycINFO and Embase). Data were extracted to record how the measures were administered, the domains of quality‐of‐life addressed and whether they had been used in a registry context. Phase 2—Qualitative study: Four focus groups were conducted with carers to examine the acceptability of selected measures and to identify outcomes that were important but missing from these measures. Results: Phase 1: Ninety‐nine carer measures were identified with the top four being the Zarit Burden Interview (n = 39), the Short‐Form12/36 (n = 14), the Brief Coping Orientation to Problems Experienced scale and the Sense of Coherence scale (both n = 9). Modes of administration included face‐to‐face (n = 50), postal (n = 11), telephone (n = 8) and online (n = 5). No measure had been used in a registry context. Phase 2: Carers preferred brief measures that included both outcome and experience questions, reflected changes in carers' circumstances and included open‐ended questions. Conclusions: Carer‐reported measures for a dementia clinical quality registry need to include both outcome and experience questions to capture carers' perceptions of the process and outcomes of care and services. Existing carer‐reported measures have not been used in a dementia registry context and adaption and further research are required. [ABSTRACT FROM AUTHOR]

People with dementia and their care partners report a lack of support, treatment, and information, fragmented services, and a lack of inclusion in decisions about their care. Care planning may address these issues; however, there is scarce literature on the process or benefits of care planning for people with dementia. This review describes the literature on care planning for community-dwelling people with dementia and their care partners. A systematic scoping methodology was followed to identify the research questions, identify relevant documents, select relevant documents, chart the data, and collate, summarise, and report the results. 31 full-text documents published between 2010 and May 2020 were identified and reviewed. Seven were guidelines, seven were expert opinion pieces, 11 were intervention studies, and six were descriptive studies. The topics and process of care planning varied depending on the service context (e.g., memory clinic, home care, and primary care). Care planning was presented as a component of case management in 15 papers. Six of the 11 intervention studies reported positive outcomes, one showed no improvement, and one did not evaluate outcomes for people with dementia or their care partners. Of the six with positive outcomes, four evaluated care planning in the context of care management. There is limited evidence that care planning alone improves outcomes for people with dementia and their care partners. It is unclear whether it may have benefits when combined with care management. [ABSTRACT FROM AUTHOR]

Background: There are a range of treatment options for osteoarthritis (OA) of the knee and hip, each with a unique profile of risks and benefits. Patient decision aids can help incorporate patient preferences in treatment decision‐making. The aim of this study was to develop and test the utility of a patient decision aid for OA that was developed using a multicriteria decision analytic framework. Methods: People contemplating treatment for OA who had accessed the website myjointpain.org.au were invited to participate in the study by using the online patient decision aid. Two forms of the patient decision aid were created: A shorter form and a longer form, which allowed greater customization that was offered to respondents after they had completed the shorter form. Respondents also completed questions asking about their experience using the patient decision aid. Results: A total of 625 self‐selected respondents completed the short‐form and 180 completed the long‐form. Across both forms, serious side effects, pain and function were rated as the most important treatment outcomes. Most respondents (64%) who completed the longer form reported that using the tool was a positive experience, 38% reported that using the tool had changed their mind and 48% said that using the tool would improve the quality of their decision‐making. Conclusions: Overall, the findings suggest that this patient decision aid may be of use to a substantial number of people in facilitating appropriate treatment decision‐making. Patient or Public Contribution: Service users of myjointpain.org.au were involved through their participation in the study, and their feedback will guide the development of future iterations of the tool. [ABSTRACT FROM AUTHOR]

Background and objectives: Caregivers may encounter, or inadvertently cause, refusals of care by a care recipient. Managing refusals of care can be challenging and have potential negative consequences. We aimed to examine caregivers' (care-home staff and family carers) experiences of managing refusals of personal care in advanced dementia. Research design and methods: One-to-one semi-structured interviews with 12 care assistants from six care homes and 20 family carers who were physically assisting a person with advanced dementia with their personal care in the UK. Interviews were audio recorded and transcribed verbatim, with data analysed using qualitative content analysis. Findings: Core to the caregiver experience of refusals of care was knowing the person . This underpinned five key themes identified as caregivers' strategies used in preventing or managing refusals of care: (1) finding the right moment to care; (2) using specific communication strategies; (3) being tactful: simplifying, leaving, or adapting care; (4) having confidence in care; and (5) seeking support from others when safety is at risk. Discussion and implications: Different caregiver relationships with the person with dementia influenced how they managed refusals of care. Refusals of care can place caregivers in tough situations with tensions between providing care when it is seemingly not wanted and leaving care incomplete. Both caregiver groups require support such as coaching, mentoring and/or advice from other health and social care practitioners to manage difficult personal care interactions before crisis points occur. [ABSTRACT FROM AUTHOR]

The decline of language and communication abilities is common among people living with dementia and impacts on many areas of everyday life, including active participation in social activities and decision‐making. Despite a growing body of supporting evidence for approaches that address language and communication decline in dementia, the concept of communication rehabilitation is largely neglected in this population. This paper reports on the content validation of a novel tool, the Communication Support Needs Assessment Tool for Dementia (CoSNAT‐D). The tool has been developed to assist in the initial identification of communication difficulties and related support needs of people living with dementia. Importantly, the CoSNAT‐D is the only available tool that takes a three‐way informed approach, considering the view of the person living with dementia, their carer and an administering healthcare professional. Content validity was established between September and December 2018 using a modified Delphi approach. An international expert panel rated 32 items of a face‐validated item pool regarding their importance and relevance through an iterative feedback process. Consensus was pre‐determined at 70% of agreement for both importance and relevance of an item. Data were analysed using descriptive statistics and qualitative content analysis of comments provided in each round. Twenty‐eight experts working in dementia, language and communication participated in the Delphi survey. Qualitative analysis resulted in the addition of five items, of which three reached the required consensus in Round 3. Consensus was established for 35/37 items in three rounds. The pilot version of the CoSNAT‐D demonstrates adequate content validity and face validity. The use of the CoSNAT‐D may assist a range of healthcare professionals in the decision‐making process about appropriate next management steps, and thereby improve the care path for people with dementia and language and communication impairment. The establishment of further psychometric properties is warranted. [ABSTRACT FROM AUTHOR]

Objectives: Shared decision making is the process in which the person, their representative, and health care professional share information with each other, participate in the decision-making process, and agree on a course of action. At present, very little is known about shared decision making (SDM) in medication management from the perspective of long-term care facility residents. The objective of this study was to identify residents' beliefs, motivation, and aspects of the environment that facilitate or impede SDM.Design: A qualitative study was conducted using face-to-face semi-structured interviews, and data analysis was carried out using a thematic approach.Setting: Six long-term care facilities in Sydney, Australia.Participants: Thirty-one residents.Results: Enablers to resident involvement in SDM were resident beliefs in exercising their right to take part in medication-related decisions, preference to maintain control over decisions, and motivation to raise concern about medication. Residents were not motivated to be involved in SDM if they believed they had no control over life circumstance, perceived that medications were necessary, or experienced no problems with their medications. Participation in SDM was hindered by limitations in opportunities for resident involvement, engagement with staff and primary care physician to discuss issues related to medications, and continuity of care with their regular physician.Conclusion: This study highlights that the residents' beliefs in control over decisions and concerns about medication are a significant function of the SDM process. It is important that residents are given the choice to take part in SDM, their beliefs and values regarding SDM are understood, and the culture of the care facility respects residents' right to participate in SDM. [ABSTRACT FROM AUTHOR]

The heterogeneous and multi-factorial nature of dementia requires the consideration of all health aspects when predicting the risk of its development and planning strategies for its prevention. This systematic review of reviews provides a comprehensive synthesis of those factors associated with cognition in the context of dementia, identifying the role of social aspects and evidencing knowledge gaps in this area of research. Systematic reviews and meta-analyses from 2009–2021 were searched for within Medline, PsycINFO, CINAHL Complete, Cochrane, and Epistemonikos. Reviewers independently screened, reviewed, and assessed the records, following the PRISMA-2020 guidelines. From 314 included studies, 624 cognitive-related factors were identified, most of them risk factors (61.2%), mainly belonging to the group of 'somatic comorbidities' (cardiovascular disease and diabetes) and 'genetic predispositions'. The protective factors (20%) were mainly related to lifestyle, pointing to the Mediterranean diet, regular physical activity, and cognitively stimulating activities. Social factors constituted 9.6% of all identified factors. Research on biological and medical factors dominates the reviewed literature. Greater social support and frequent contact may confer some protection against cognitive decline and dementia by delaying its onset or reducing the overall risk; however, overall, our findings are inconsistent. Further research is needed in the fields of lifestyle, psychology, social health, and the protective factors against cognitive decline and dementia. [ABSTRACT FROM AUTHOR]

Background: The long-term care workforce is an essential factor in the provision of qualified long-term care services. Identifying workforce issues can help developing countries in East Asia and the Pacific prepare for the increase in the older population. Their experiences can be used as lessons for other countries. This study aimed to identify the workforce issues that should be addressed in order to provide high-quality long-term care services for older adults. Methods: In-depth interviews and content analysis were conducted with a purposive sample of long-term care experts. There were eight participants from Australia and 14 from South Korea. The participants were questioned on important workforce issues to improve the quality of long-term care services. These were open-ended questions that comprised ideas derived from the literature. Major themes were systematically and comprehensively classified and coded to examine recurring comments and themes. Results: The issues in the two countries were very similar: labor shortages, inadequate working conditions, insufficient career and staff training, and the need of counselors or consultants for finding proper services. There were also differences in terms of competency of the service operators and their corresponding multicultural competency. Conclusions: Providing high-quality long-term care service requires multipronged approaches to workforce capacity and work environment. An adequate and competent workforce should be established to match the service needs of the older population. To improve quality, better working conditions and improved motivation to work in care for older people should be considered. Concurrently, each country would need a workforce strategy tailored to different conditions and environments. This should include policies to induce an influx into the workforce. [ABSTRACT FROM AUTHOR]

Rationale, Aims, and Objectives: Caregivers of people living with dementia play an essential role in managing medications across transitions of care. Adequate caregiver medication management guidance at hospital discharge is important to ensure optimal outcomes from medication use. This qualitative study explores the experiences and perspectives of caregivers about the medication management guidance provided at hospital discharge. Methods: A qualitative approach using semi‐structured, telephone interviews was conducted with 31 caregivers of people with dementia across Australia. Purposive sampling was used to ensure maximum variation of diverse experiences and perspectives. Results: Caregivers' experiences of medication guidance for people with dementia at discharge were described in three themes including: (a) inadequate information about medication management at discharge; (b) limited caregiver engagement in medication management decisions; and (c) difficulties ensuring medication supply post discharge. Most participants indicated they would like to be included in discussions at discharge. However, participation was influenced by caregivers being overwhelmed by discharge processes; proactively seeking information on medication‐related harm; and belief in advocacy as part of their caregiver role. Caregivers reported they would like to receive a tailored medication list for people with dementia which included information on medications that may impact on the patient's cognition, and for hospital staff to communicate with both the community pharmacist and primary care physician, to improve co‐ordination post transition. Discussion: In our study of caregivers of people with dementia, we identified key recommendations to facilitate regular participation of people living with dementia and their caregiver around medication guidance at discharge. [ABSTRACT FROM AUTHOR]

Background: This study examined how occupational therapists, nurses, and their managers within different organizational contexts in the Australian health and aged care system prepare for implementation. The program being implemented was the Care of People with dementia in their Environment (COPE) program, a community reablement program for people with dementia and their carers. Methods: Qualitative data from 29 in-depth interviews were collected from occupational therapists, nurses, and their managers. Recruitment ensured a variety of organizational contexts were included. Thematic analysis was used to capture key themes. Results: Themes include innovation in a time of instability and uncertainty, values that align with the innovation, shifting the day-to-day practice, and confidence in new specialized skills. Conclusion: Organizations need to carefully consider internal and external contexts when planning implementation efforts. Study findings have informed plans for embedding delivery of the program within the health and aged care sector. [ABSTRACT FROM AUTHOR]

Background and Objectives The translation of reablement programs into practice is lagging despite strong evidence for interventions that maintain function for the person living with dementia as well as improve carer well-being. The aim was to evaluate the implementation of an evidence-based program, Care of People with Dementia in Their Environments (COPE), into health services. Research Design and Methods An implementation-effectiveness hybrid design was used to evaluate implementation outcomes while simultaneously involving a pragmatic pre–post evaluation of outcomes for people with dementia. We report uptake, fidelity to intervention, outcomes for people living with dementia and carers, and beliefs and behaviors of interventionists contributing to successful implementation. Results Seventeen organizations in Australia across 3 health contexts, 38 occupational therapists, and 17 nurses participated in training and implementation. While there were challenges and delays in implementation, most organizations were able to offer the program and utilized different models of funding. Overall, we found there was moderate fidelity to components of the program. Pre–post outcomes for carer well-being and coping (Perceived Change Index, p <.001) and activity engagement of the person living with dementia (p =.002) were significantly increased, replicating previous trial results. What contributed most to therapists implementing the program (Determinants of Implementation Behaviour Questionnaire) was a stronger intent to deliver (p <.001), higher confidence (p <.001), a sense of control in delivery (p =.004), and a belief the program was very useful to their clients (p =.002). Discussion and Implications This study demonstrated that implementation is possible in multiple health systems and beneficial to individuals and their families. [ABSTRACT FROM AUTHOR]

Many publications on dementia start by outlining the current estimated number of people with dementia and how that figure is going to double (in Western societies) or even quadruple (in developing countries) in the coming decades as a result of increasing life expectancy (in itself a good development). Dementia is therefore a huge challenge to society, both in terms of providing good care for persons living with dementia and their family caregivers, as well as in searching for curative solutions. Both these challenges are complex. Fortunately, recent research indicates primary prevention to be a promising additional strategy in the dementia quest. Now that epidemiological research robustly shows the link between lifestyle and risk of dementia, new challenges emerge, such as how to increase public awareness about brain health, how to develop and implement strategies to promote brain healthy lifestyles and how to avoid increasing health inequalities. Interdem, the pan-European network of researchers on Psychosocial Interventions in Dementia, strongly welcomes this new strategy and consequently established a taskforce on primary prevention. In this position paper, we outline what we see as main building blocks of primary prevention of dementia. [ABSTRACT FROM AUTHOR]

The effect of biannual medication reviews on the appropriateness of psychotropic drug use for neuropsychiatric symptoms in patients with dementia: a randomised controlled trial. This paper is a commentary on the paper by Smeets I etal. i (2020), which reports results of the PROPER (Prescription Optimization of Psychotropic drugs in Elderly nuRsing home patients with dementia) II cluster-randomized controlled trial that aimed to establish the effectiveness of a multidisciplinary biannual medication review on improving the psychotropic medication prescribing practice in Dutch nursing homes (aged care homes hereafter). The APID is partly based on Dutch drug formularies which do not allow for some psychotropic medications to be scored as inappropriate for therapy duration (van der Spek I etal. i , 2015). Given that the rationale for the psychotropic medication prescriptions was treatment of BPSD, it would have been helpful to investigate the role of individual BPSD in the prevalence of psychotropic medication prescriptions. [Extracted from the article]

Background: With the introduction of consumer‐directed care in the Australian community aged care sector, there are more opportunities for occupational therapists to provide evidence‐based services that meet consumer needs. There is also an increasing requirement for health professionals to promote their interventions to consumers. Particularly for the implementation of new programs within organisations. However, occupational therapists have historically neglected widely promoting the role of occupational therapy services for older people. This study examines the perceptions of occupational therapists and their managers in promoting their service; the Care of People in their Environment (COPE) Program. Methods: This study utilised a qualitative interpretative description; including 28 in‐depth interviews. Purposeful sampling ensured a variety of occupational therapists from different health contexts. Thematic analysis captured key emergent themes related to promoting occupational therapy interventions and implementation. Results: Many occupational therapists were apprehensive about promoting or selling their services and interventions. Greater levels of confidence in promoting the program were present when the program aligned with traditional models of service delivery and organisational processes. Occupational therapists described having limited opportunity to directly promote the program to consumers as community case managers were mostly the main contact at the organisation. There was limited consideration of promotion strategies and therefore limited enactment of strategies by organisations. Not‐for‐profit and non‐government organisations recognise that the changed community aged care market provided new business opportunities. Conclusion: With changes in the Australian aged care system, occupational therapy has great opportunity to provide diverse, evidence‐based interventions driven by the needs of consumers. Reframing the notion of 'selling', to empowering consumers to be more informed about their options, will allow occupational therapists to build confidence in their promotional skills. Promoting evidence‐based programs will have positive outcomes for the visibility, professional identity and recognition of occupational therapy. [ABSTRACT FROM AUTHOR]

Objective: To qualitatively examine the experiences with, and impact of, evidence-based online resources in self-management among Australians with osteoarthritis.Methods: Telephone interviews were conducted with 36 users of a novel osteoarthritis resource, the Osteoarthritis Awareness Hub. Rogers' 5 attributes of innovation (relative advantage, compatibility, complexity, trialability, and observability) and outcomes guided the semistructured interview and analysis. Maximum variation sampling was used, and data saturation occurred after 33 interviews. A coding scheme was agreed upon and all interview data were entered into NVivo for qualitative content analysis.Results: Study participants had high levels of literacy and health literacy. For adoption and implementation of an innovation, the participants' narratives confirmed and underscored the fact that it was important that it come from an authoritative and trusting voice and that its perceived benefits align with participants' values and existing practices (relative advantage and compatibility). The participants also valued seeing the practical benefits of the innovation, such as its capacity to impart quality and balanced new insights and information, and to maintain and monitor their personal progress. Notably, many participants spoke about the mental and physical health benefits that they derived from engagement with the online resources.Conclusion: Our study findings confirm that web-based tools can be a useful adjunct to patients adopting self-management strategies. Rogers' theory provides a framework for a deeper appreciation of the how, why, and what questions concerning the adoption and implementation processes, especially among people with good technology and health literacy. [ABSTRACT FROM AUTHOR]

Background: Cognitive impairment may limit the uptake of secondary prevention in acute coronary syndrome patients, but is poorly understood, including in cardiac rehabilitation participants. Aim: The aim of this study was to explore cognitive impairment in relation to psychological state in acute coronary syndrome patients over the course of cardiac rehabilitation and follow-up. Methods: Acute coronary syndrome patients without diagnosed dementia were assessed on verbal learning, processing speed, executive function and visual attention, at cardiac rehabilitation entry, completion and follow-up and scores adjusted using normative data. The hospital anxiety and depression scale measured psychological state. Results: Participants (n = 40) had an average age of 66.2 (±8.22) years and were 70% men. Mild cognitive impairment occurred at cardiac rehabilitation entry in single 62.5% and multiple 22.5% domains but was significantly less prevalent by cardiac rehabilitation completion (52.5% and 15.0%) and follow-up (32.5% and 7.0%). Domains most often impaired were verbal learning (52.5%) and processing speed (25.6%), again decreasing significantly with time (verbal learning cardiac rehabilitation completion 42.5%, follow-up 22.5%; processing speed cardiac rehabilitation completion 15.0%, follow-up 15.0%). A small group of patients had persistent multiple domain cognitive impairment. At cardiac rehabilitation entry patients with cognitive impairment in processing speed, a single domain or multiple domains had more depression, and patients with cognitive impairment in executive function had more depression and anxiety. Conclusions: At cardiac rehabilitation entry, mild cognitive impairment is very common in post-acute coronary syndrome patients and worse in patients who have depression or anxiety symptoms. Cognitive impairment decreases significantly by cardiac rehabilitation follow-up. A small proportion of patients has persistent, multiple domain cognitive impairment flagging potential long-term changes and the need for further investigations and cognitive rehabilitation. [ABSTRACT FROM AUTHOR]

Aims: Implementation of novel interventions occurs within broad organisational contexts, which contain many relationships and moving parts. Efforts need to be made to understand these relationships as they are an important predictor of successful implementation. This study examines the relationships between health professionals involved in the implementation of an evidence-based community program for people with dementia and their carers in Australia, The Care of People with dementia in their Environments program. Methods: This study utilised mixed methods including in-depth interviews and organisational diagrams. Qualitative data from 28 interviews were collected from occupational therapists, nurses and their managers. Recruitment ensured a variety of different organisational contexts were represented. Thematic analysis was used to capture key emergent themes. Findings: The strongest relationships were usually between the occupational therapist and their manager. Strong trusting relationships with managers were instrumental in advocating for the need for reablement programs and the occupational therapy professional role in dementia care. Large teams of occupational therapists were seen to be beneficial in supporting each other in case complexities. Relationships between occupational therapists and nurses were often missing or perceived as weak relationships. A conducive physical environment contributed to stronger more collaborative relationships, where individuals were visible and therefore felt to be more approachable. Conclusion: Our study highlights the additional preparation work that is required of organisations to consider relationships in their strategies for implementation. [ABSTRACT FROM AUTHOR]

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;

Language and communication difficulties are common in dementia but limited tools are available for a timely assessment of those individuals who experience these difficulties. The Communication‐Support Needs Assessment Tool in Dementia (CoSNAT‐D) was developed to assist in (a) the early identification of communication difficulties among people with dementia in the community context; and (b) determining the level of their communication support needs to guide appropriate service access. The CoSNAT‐D was developed based on a literature review. The face validity was tested with end‐users (people with dementia and support persons of people with dementia) regarding relevance, wording, syntax, appropriateness and comprehensiveness of the items of the tool. Data were collected using semi‐structured phone interviews. Seven people with dementia and 15 carers participated in the study. Feedback regarding items' appropriateness was largely positive and minor changes were made to improve comprehensiveness. A new item was added to the original item pool. The interviews highlighted the importance of including people with dementia in the assessment processes and person‐centered approaches in this context. The CoSNAT‐D presents a first step for the early identification of individual support needs of people living with dementia and communication difficulties who live in the community. Items of the CoSNAT‐D have been determined face‐valid by end‐users. The face‐validated version of the tool is currently undergoing further testing to determine additional relevant psychometric properties. [ABSTRACT FROM AUTHOR]

Background: Engagement of people with dementia who are living in the community, their family or carers, and healthcare professionals in decision-making related to their future care is an area yet to be explored in the literature. In particular, little is known about the factors most likely to underpin their engagement.Objectives: To identify key factors for the engagement of the person with dementia living in the community, as well as their family or carer and their healthcare professionals in decision-making processes related to future care.Design: This is an integrative review guided by the PRISMA guidelines; the Mixed Methods Appraisal Tool was used to assess study quality. MEDLINE, PubMed, CINAHL, PsycINFO and Embase databases were searched for articles published from 2012 to 2018 that focused on people with dementia who live in the community, their family or carers, and community-based healthcare professionals.Results: Twenty articles were included in the review, and six key factors were identified through thematic analysis: knowledge and understanding of dementia and decision-making for the future, valuing decision-making for the future, healthcare professionals' communication skills, timing of initiating conversations, relationship quality, and orientation to the future.Conclusion: This review identifies the six key factors required for the engagement of the three primary key stakeholders in decision-making about the future care of people with dementia. It also situates the factors within the complex context in which people with dementia, their family or carers, and healthcare professionals typically find themselves. [ABSTRACT FROM AUTHOR]

Limited evidence exists concerning knowledge and understanding of how to optimally support residents' physical activity, mobility and functional independence in residential aged care homes. An interpretive qualitative study was conducted to explore residents' perceptions and experiences of opportunities for physical activity and functional independence, and how physical activity and functional independence are challenged in their care home environment. Purposefully sampled 24 participants (male = 13) from five not‐for‐profit residential aged care homes in the outskirts of a metropolitan area in Australia, were interviewed between August and September 2017. Maintaining independence was found to be the utmost priority for nearly all participants in this study. Yet, many did not make the connection between physical activity and independence, and regarded 'exercise' as an inappropriate activity for them, perceiving it as high‐impact, high‐intensity activity in commercial gyms that was only appropriate for the young. Walking and gardening were found to be most popular. Walking could be a physical activity, social activity, solo recreational activity and a means of maintaining mobility and functional independence—all of which residents considered to be appropriate to them and achievable. The study identified key factors influencing physical activity and functional independence of residents: levels of activity prior to living in residential aged care, ageism, social capital and loss of a loved one, pain and staff support. Findings highlight the need for a 'flexible and inclusive' approach in facilitating the resident's physical activity, and a greater role for staff in encouraging residents' engagement in, and communicating the benefits and requirements of, physical activity, through, for example, motivational interviewing. [ABSTRACT FROM AUTHOR]

Improving children's understanding of people with dementia is essential for tackling societal stigma around dementia. Kids4Dementia is a teacher-led multimedia dementia education resource for 9–12 year olds (approximately 150 minutes duration). A non-randomised, waitlist-controlled, mixed-methods design examined whether Kids4Dementia was (1) efficacious in improving students" attitudes towards people with dementia and (2) engaging and acceptable for teachers and students. Students who completed Kids4Dementia (n = 136) showed improved scores on the Kids Insight into Dementia Survey, relative to the control school (n = 67), especially students who had not heard of dementia before (Time × Group × Dementia Familiarity interaction, F (1, 191) = 5.28, p =.023, partial η2 =.027). Qualitative reports indicated that the program was acceptable and engaging for teachers and students and corroborated improvement in student empathy and behavioural intentions towards people with dementia. The findings provide preliminary evidence for the efficacy of Kids4Dementia as an engaging, stakeholder-directed, curriculum-aligned dementia education program. [ABSTRACT FROM AUTHOR]

Objective: To review research published in the AJA in terms of authors' positions and disciplinary backgrounds, and the settings in which research was done. Methods: Eighty two papers by 373 authors, in Vol. 35 No 1, March 2016, to Vol 37 No 2, June 2018, were reviewed. Results: Different clusters of authorship were found for research using surveys or database analyses, research in hospitals and aged care settings. Two out of three authors held academic positions, and professional practitioners in hospitals were much more likely to have academic affiliations than in aged care settings. Differing research cultures are seen to contribute to these outcomes. Conclusions: Editorial policies have been central to maintaining publication standards. The Journal's publication partners could take a number of actions to advance recognition of professionals in different roles as authors and to expand the range of research published, especially nursing and social science research. [ABSTRACT FROM AUTHOR]

Objectives: To ascertain Australian multistate prevalence and incidence of five commonly collected clinical indicators of aged-care home quality and to measure associations between these clinical indicators and levels of care needs and consumer and staff satisfaction. Methods: A retrospective analysis of national audit data collected from 426 facilities between 2015 and 2016 was performed. Regression models were used to examine associations between five clinical indicators (falls, pressure injury, physical restraint, unplanned weight loss and polypharmacy) and level of care needs measured by the Aged Care Funding Instrument (ACFI) and consumer and care staff survey responses. Results: With the exception of polypharmacy, commonly collected negative clinical outcomes were rare events. Compared with care homes with <25% of residents having high-level care needs (high ACFI), homes with 25<75% high-ACFI residents had more occurrences of all negative clinical outcomes except pressure injury. Homes with ≥75% high-ACFI residents reported the highest rates of polypharmacy (odds ratio 1.48, 95% confidence interval 1.39 – 1.57). Falls, unplanned weight loss and pressure injury were inversely associated with satisfaction scores adjusted for residents' level of care needs. Conclusions: This first Australian study of multistate clinical indicator data suggests interpretation of clinical indicators of aged-care home quality requires consideration of the level of residents' care needs. What is known about the topic?: Many Australian aged-care providers use quality indicators (QI) through benchmarking companies or in-house programs. The five most widely used aged-care clinical QIs in Australia are falls, pressure injury, physical restraint, unplanned weight loss and polypharmacy. Prevalence and incidence of these QIs are highly variable among Australian studies. A consistent message in the international literature is that residents' clinical characteristics influence QI outcomes at baseline and may continue to influence outcomes over time. Study of associations between Australian aged-care home characteristics and QI outcomes has been limited. What does this paper add?: This is the first Australian study of multistate clinical QI data. It is also the first to consider the level of resident care needs in the interpretation of clinical QI outcomes and exploration of the association between level of consumer and staff satisfaction and QI outcomes. What are the implications for practitioners?: Understanding the connections between aged-care home characteristics, consumer and staff perceptions and clinical QIs is crucial in the meaningful interpretation of QI outcomes in context. With the recent introduction of the National Aged Care Quality Indicator Program, it is timely to review national policy, to gauge current quality of care and the measure of care quality in the sector, and to develop directions for possible research to inform and resolve debates regarding the potential influence and unplanned effects that such a program may have. [ABSTRACT FROM AUTHOR]

Purpose: To explore the feasibility of implementing the Tailored Activity Program with a cohort of people with frontotemporal dementia and their carers (dyads). Methods: The Tailored Activity Program is an occupational therapy based intervention that involves working collaboratively with family carers and prescribes personalized activities for behavioral management in people with dementia. Twenty dyads randomized into the study (Tailored Activity Program: n = 9; Control: n = 11) were assessed at baseline and 4-months. Qualitative analyzes evaluated feasibility and acceptability of the program for the frontotemporal dementia cohort, and quantitative analyzes (linear mixed model analyzes, Spearman's rho correlations) measured the impact of the program on the dyads. Results: The Tailored Activity Program was an acceptable intervention for the frontotemporal dementia dyads. Qualitative analyses identified five themes: "carer perceived benefits", "carer readiness to change", "strategies used by carer to engage person with dementia", "barriers to the Tailored Activity Program uptake/implementation", and "person with dementia engagement". Quantitative outcomes showed an overall reduction of behavioral symptoms (F18.34 = 8.073, p = 0.011) and maintenance of functional performance in the person with dementia (F18.03 = 0.375, p = 0.548). Conclusions: This study demonstrates the potential for using an activity-based intervention such as the Tailored Activity Program in frontotemporal dementia. Service providers should recognize that while people with frontotemporal dementia present with challenging issues, tailored therapies may support their function and reduce their behavioral symptoms. Implications for rehabilitation: The Tailored Activity Program is an occupational therapy based intervention that involves prescribing personalized activities for behavioral management in dementia. The Tailored Activity Program is an acceptable and feasible intervention approach to address some of the unique behavioral and functional impairments inherent in frontotemporal dementia. [ABSTRACT FROM AUTHOR]

Objectives: An Asia-Pacific regional collaboration group conducted its first multi-country research project to determine whether or not European quality indicators (QIs) for psychosocial care in dementia could be implemented as a valid tool in residential aged care across seven Asia-Pacific sites (Australia, Hong Kong Special Administrative Region, Mainland China, Malaysia, Singapore, South Korea, and Thailand). Method: Following the European QI protocol, auditing and data extraction of medical records of consenting residents with dementia were conducted by trained auditors with relevant health care backgrounds. Detailed field notes by the auditors were also obtained to describe the characteristics of the participating care facilities, as well as key issues and challenges encountered, for each of the 12 QIs. Results: Sixteen residential care facilities in the seven Asia-Pacific sites participated in this study. Data from 275 residents' records revealed each of the 12 Qis' endorsement varied widely within and between the study sites (0%-100%). Quality of the medical records, family and cultural differences, definitions and scoring of certain indicators, and time-consuming nature of the QI administration were main concerns for implementation. Conclusion: Several items in the European QIs in the current format were deemed problematic when used to measure the quality of psychosocial care in the residential aged care settings in participating Asia-Pacific countries. We propose refinements of the European QIs for the Asian-Pacific context, taking into account multiple factors identified in this study. Our findings provide crucial insights for future research and implementation of psychosocial dementia care QIs in this region. [ABSTRACT FROM AUTHOR]

Objectives: Children may have a foundational role in efforts to raise community awareness about dementia. There is some qualitative work with children with a relative with dementia, but little work into the insights of children as general citizens without affected family. One issue is an absence of measurement tools; thus the study aimed to design and pilot a psychometrically sound self-report measure of dementia attitudes for children. Method: Using a multi-staged scale development process, stakeholder and expert input informed a 52-item Kids Insight into Dementia Survey (KIDS). After a pretest of KIDS with 21 Australian schoolchildren aged 10-12 years, exploratory factor analysis and reliability and validity testing were run on a revised KIDS with data from 203 similar-aged schoolchildren. Results: The KIDS was reduced from 52 to 14 items, and a three-factor solution identified: ‘Personhood,’ ‘Stigma,’ and ‘Dementia Understanding.’ A strong positive correlation with an adult measure of dementia attitudes (r =.76) and a moderate positive correlation with a child measure of attitudes towards older adults (r =.47) indicated good concurrent validity. Internal consistency of.83 indicated good reliability. Conclusion: Results support the use of KIDS as a tool to measure children's insight into dementia, and to evaluate dementia education initiatives targeting the youth. [ABSTRACT FROM AUTHOR]

ABSTRACTBackground:The use of the pharmacopsychometric triangle to enhance patient-reported well-being as the ultimate goal of treatment has most intensively been studied in patients with a major depressive episode.Methods: The review is structured on the pharmacopsychometric triangle in which the desired clinical effect of an antidepressive medication is balanced against the undesired side effects induced by this medication in terms of restored well-being. As a biological treatment, the antidepressive medication is compared clinically with both electroconvulsive therapy and psychological treatment.Results: In the process of this review, evidence from a dose-response study in patients suffering from a major depressive episode with an adequate duration and symptom severity has demonstrated that the dose-response relationship emerged when using the patient-reported well-being outcome rather than the symptomatic reduction as outcome.Conclusion: The pharmacopsychometric triangle is in patients with major depressive episodes providing important information within positive psychiatry. [ABSTRACT FROM AUTHOR]

The notion of social health (Huber et al., 2011) as applied to dementia care research was introduced to redress the balance of empirical studies that tended to focus on biomedical, cognitive, and functional status in dementia (Vernooij-Dassen and Jeon, 2016). The introduction of social health has followed the zeitgeist of campaigners for a better life for those living with dementia, with initiatives to improve the social images of dementia (Alzheimers.org, 2017). Examples from social research in dementia to examine friendships and the social environments of people with dementia exist (Medeiros et al., 2012), but introduction of the paradigm of social health in dementia (Vernooij-Dassen and Jeon, 2016) has harnessed a growing research agenda (de Vugt and Dröes, 2017). This paradigm provides an umbrella concept to study how social aspects influence the dynamic balance between opportunities and limitations in dementia. Social health goes beyond the neuropathology of dementia, to understand how people, their social networks and wider society with its norms, interact with the condition (Vernooij-Dassen and Jeon, 2016). It is not far removed from the ideas of Tom Kitwood, the pioneer of person-centered dementia care, who noted that "personhood is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being" (Kitwood, 1997). The INTERDEM (Early detection and timely INTERvention in DEMentia, www.interdem.org) psychosocial research agenda aspired to improve knowledge about social inclusion and reciprocal relationships for people with dementia (Moniz-Cook et al., 2011). The concept of social health (Vernooij-Dassen and Jeon, 2016) with its dimensions for dementia research (Dröes et al., 2017) has begun to develop this knowledge-base. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Our experience evaluating a museum program for people with dementia together with their family members demonstrated benefits for all participants. We hypothesized that participation in a chorus would also have positive effects, giving them an opportunity to share a stimulating and social activity that could improve their quality of life. We inaugurated a chorus for people with dementia and their family caregivers in 2011, which rehearses and performs regularly. Each person with dementia must be accompanied by a friend or family member and must commit to attending all rehearsals and the concert that ensues. A pilot study included a structured assessment, take home questionnaires and focus groups. Analyses of pre-post scores were conducted; effect size was quantified using Cohen's d. Results showed that quality of life and communication with the other member of the dyad improved (Effect size: Cohen's d between 0.32 and 0.72) for people with dementia; quality of life, social support, communication and self-esteem improved (d between 0.29 and 0.68) for caregivers. Most participants stated that benefits included belonging to a group, having a normal activity together and learning new skills. Participants attended rehearsals in spite of harsh weather conditions. The chorus has been rehearsing and performing together for more than 6 years and contributing to its costs. Results of this pilot study suggest that people in the early to middle stage of dementia and their family members and friends can enjoy and learn from rehearsing and performing in concerts that also engage the wider community. It is essential to conduct additional larger studies of the benefits of participating in a chorus, which may include improved quality of life and social support for all, and reduced cognitive decline among people with dementia. [ABSTRACT FROM AUTHOR]

ABSTRACTBackground:Dementia, even more than cancer, demands long-term care. While in Indonesia cancer is accepted as a disease requiring caregiving, dementia is still considered "a normal condition." These differences might affect the experiences of caregivers, especially those relating to social health, the subject of our study. We aim to describe and compare the lived experiences of family caregivers of patients with cancer (PWC) with those of patients with dementia (PWD) in Yogyakarta, Indonesia, and to explore the role of their social health in these experiences.Method: A qualitative design was applied. In-depth face-to-face interviews were conducted with PWC and PWD caregivers in two outpatient clinics of a tertiary hospital. The constant comparative method was applied to analyze the data that were interpreted using the concept of social health to explore the experiences of the caregivers. We used Atlas.ti software.Results: Three themes were identified: problems with caregiving, dealing with problems, and beliefs in caregiving. We found more similarities than differences in the experiences of caregivers in both groups. Half of the categories were related to social health: challenges, consequences, hiding, social support, and the caregiver's approach. The organization of dementia care is characterized by simplicity and direct ties between medical specialists, PWD, and caregivers, whereas cancer care encounters coordination problems.Conclusions: Family caregivers of both groups mostly had similar experiences of the caregiving process. Gaining a better understanding of the specific experiences of caregivers, and their social health, opens new avenues for interventions to improve their quality of life. [ABSTRACT FROM AUTHOR]