Cross-sectional survey of staff and family perspectives on the use of CCTV in Australian residential aged care.

OBJECTIVE: To describe staff and family members' opinions about closed-circuit television (CCTV) in communal and private areas of residential aged care facilities (RACF), and to investigate how this relates to perceptions of care quality. METHODS: A cross-sectional survey was developed to capture perceptions of CCTV's influence on care quality, and acceptable locations for CCTV placement. Data were recorded as ordinal-scale and open responses. Non-parametric tests of association were conducted. RESULTS: The survey was completed by 81 staff and 74 family members. Both staff and family were satisfied with care quality and safety, irrespective of CCTV use. More family members were in favour of CCTV in both public and private areas, compared to staff who favoured public areas. Staff and family assumed there was real-time monitoring, leading to a belief that CCTV monitoring would improve safety and prevent falls and abuse. Concerns were raised that CCTV could be used instead of improving staff-to-resident ratios and interaction. CONCLUSIONS: Overall, participants supported the use of CCTV more in public than in private areas and believed it reveals and prevents poor care. There was no association between CCTV use and satisfaction with care. Closed-circuit television can have positive impacts if all stakeholders are involved in implementation.

A Systematic Review of Dementia Research Priorities.

INTRODUCTION: Patient involvement is a critical component of dementia research priority-setting exercises to ensure that research benefits are relevant and acceptable to those who need the most. This systematic review synthesises research priorities and preferences identified by people living with dementia and their caregivers. METHODS: Guided by Joanna Briggs Institute methodology, and Preferred Reporting Items for Systematic Reviews and Meta-Analyses framework, we conducted a systematic search in five electronic databases: CINAHL, Medline, PsycINFO, Web of Science and Scopus. The reference lists of the included studies were also manually searched. We combined quantitative and qualitative data for synthesis and descriptive thematic analysis. RESULTS: Eleven studies were included in this review. Findings are grouped into four main categories: Increase in knowledge, education, and awareness; Determining the cause; Sustainability of care; and Cure of dementia and related conditions. CONCLUSION: There is a need to respond to the stigma associated with dementia, which limits access to care and the quality of life for both people living with dementia and their caregivers. We need to work on changing public, private and workplace attitudes about dementia and encourage supporting and participating in dementia research. Future research should involve people living with dementia and their primary caregivers from culturally and linguistically diverse communities in priority-setting exercises.

Palliative prognostic scores for survival prediction of cancer patients: a systematic review and meta-analysis.

BACKGROUND: The Palliative Prognostic Score (PaP) is the most widely validated prognostic tool for cancer survival prediction, with modified versions available. A systematic evaluation of PaP tools is lacking. This systematic review and meta-analysis aimed to evaluate the performance and prognostic utility of PaP, Delirium-PaP (D-PaP), and PaP without clinician prediction in predicting 30-day survival of cancer patients and compare their performance. METHODS: Six databases were searched for peer-reviewed studies and grey literature published from inception till 2/6/2023. English studies must assess PaP, D-PaP, or PaP without clinician predicted survival for 30-day survival in adults ≥18 years old with any stage or type of cancer. Outcomes were pooled using the random effects model or summarised narratively when meta-analysis was not possible. RESULTS: Thirty-nine studies (n = 10,617 patients) were included. PaP is an accurate prognostic tool (pooled AUC = 0.82, 95% CI 0.79-0.84) and outperforms PaP without clinician predicted survival (pooled AUC = 0.74, 95% CI 0.71-0.78), suggesting that the original PaP should be preferred. The meta-analysis found PaP and D-PaP performance to be comparable. Most studies reported survival probabilities corresponding to the PaP risk groups, and higher risk groups were significantly associated with shorter survival. CONCLUSIONS: PaP is a validated prognostic tool for cancer patients that can enhance clinicians' confidence and accuracy in predicting survival. Future studies should investigate if accuracy differs depending on clinician characteristics. Reporting of validation studies must be improved, as most studies were at high risk of bias, primarily because calibration was not assessed.

Are remote health clinics primary health care focused? Validation of the Primary Health Care Engagement (PHCE) Scale for the Australian remote primary health care setting.

AIM: To test and validate a measure of primary health care (PHC) engagement in the Australian remote health context. BACKGROUND: PHC principles include quality improvement, community participation and orientation of health care, patient-centred continuity of care, accessibility, and interdisciplinary collaboration. Measuring the alignment of services with the principles of PHC provides a method of evaluating the quality of care in community settings. METHODS: A two-stage design of initial content and face validity evaluation by a panel of experts and then pilot-testing the instrument via survey methods was conducted. Twelve experts from clinical, education, management and research roles within the remote health setting evaluated each item in the original instrument. Panel members evaluated the representativeness and clarity of each item for face and content validity. Qualitative responses were also collected and included suggestions for changes to item wording. The modified tool was pilot-tested with 47 remote area nurses. Internal consistency reliability of the Australian Primary Health Care Engagement scale was evaluated using Cronbach's alpha. Construct validity of the Australian scale was evaluated using exploratory factor analysis and principal component analysis. FINDINGS: Modifications to suit the Australian context were made to 8 of the 28 original items. This modified instrument was pilot-tested with 47 complete responses. Overall, the scale showed high internal consistency reliability. The subscale constructs 'Quality improvement', 'Accessibility-availability' and 'population orientation' showed low levels of internal consistency reliability. However, the mean inter-item correlation was 0.31, 0.26 and 0.31, respectively, which are in the recommended range of 0.15 to 0.50 and indicate that the items are correlated and are measuring the same construct. The Australian PHCE scale is recommended as a tool for the evaluation of health services. Further testing on a larger sample may provide clarity over some items which may be open to interpretation.

Palliative and End-of-Life Care Access for Immigrants Living in High-income Countries: A Scoping Review.

This scoping review aimed to explore what is known about palliative and End-of-Life (EOL) care access by immigrants with culturally and linguistically diverse (CALD) background living in high-income Organization for Economic Co-operation and Development (OECD) countries. CaLD immigrants have low utilization of palliative care services with patients' family members taking up the role of caring, leading to immigrants not fully benefiting from the specialized services that are offered to alleviate suffering and promote quality of life. While there is some research in this area mainly in Europe, it cannot be said about all high-income OECD countries. Achieving person-centered care in high-income countries, requires identifying and addressing barriers to care access, especially by immigrants with CaLD background. Five-stage methodological framework by Arksey and O'Malley was used to undertake the review. Immigrants in OECD countries experience challenges in accessing palliative and EOL care services. The review also identified limited literature on the subject and establishes need for more research on the subject.

Comparing clinico-demographics and neuropsychiatric symptoms for immigrant and non-immigrant aged care residents living with dementia: a retrospective cross-sectional study from an Australian dementia-specific support service.

BACKGROUND: Neuropsychiatric symptoms of dementia such as agitation and aggression are common in people living with dementia. The presentation of neuropsychiatric symptoms is influenced by the cultural background of people living with dementia. Further, identifying factors contributing to neuropsychiatric symptoms may be complicated if people living with dementia are immigrants or from non-English-speaking backgrounds. Most of what is known about differences in neuropsychiatric symptoms between racial and ethnic groups living with dementia come from community-based samples. This study investigated differences in clinico-demographics and neuropsychiatric symptoms between immigrants and non-immigrants living with dementia in residential aged care homes who were referred to two Dementia Support Australia programs. METHODS: This was a retrospective observational cross-sectional study from 2018 to 2022 using data extracted from the Dementia Support Australia database. Immigrant status was identified by documented country of birth. We conducted exploratory subgroup analyses for English-speaking or non-English-speaking immigrants in comparison to non-immigrants. Neuropsychiatric Inventory and PainChek® were used to assess neuropsychiatric symptoms of dementia and pain, respectively. RESULTS: Of the 23,889 referrals, 36% were immigrants living with dementia. Immigrants were 0.8 years older than non-immigrants on average. Immigrants had a slightly higher prevalence of mixed dementia (9.5%) than non-immigrants (8.2%). Overall, the groups had no difference in the severity of neuropsychiatric symptoms and associated caregiver distress. However, there was a significant difference in the total number of neuropsychiatric inventory domains (Cohen's d = -0.06 [-0.09, - 0.02], p <.001) between non-English-speaking immigrants and non-immigrants. Immigrants were more likely to present with agitation/aggression, while non-immigrants were more likely to present with hallucinations. Factors contributing to neuropsychiatric symptoms were common between the groups, with language barriers and cultural considerations frequently endorsed for immigrants. CONCLUSION: This study reveals a mixed picture of neuropsychiatric symptoms between immigrants and non-immigrants. However, due to the exploratory nature of the hypotheses, our findings need to be replicated in future studies to confirm any conclusions. There is a need for increased awareness on the impact of culture and language on neuropsychiatric symptoms for people receiving residential care. Future studies investigating neuropsychiatric symptoms in different immigrant groups will help increase our understanding of neuropsychiatric symptoms for all people.

Dementia care for people from culturally and linguistically diverse backgrounds: Qualitative secondary analysis of the Aged Care Australian Royal Commission data.

OBJECTIVE: Understanding the concerns and experiences of people living with dementia from culturally and linguistically diverse backgrounds is critical to ensure culturally appropriate care is delivered. This study aimed to describe the current experiences and concerns of older people from culturally and linguistically diverse backgrounds using the publicly available evidence from the Australian Royal Commission into Aged Care Quality and Safety. METHODS: This was a qualitative secondary analysis of the Australian Royal Commission into Aged Care Quality and Safety data to explore new and nuanced insights about care for culturally and linguistically diverse people living with dementia. Using the keywords to search the data corpus, we extracted a topic-specific data set focused on dementia care and cultural diversity. Thematic analysis was used to identify and describe the present practices and challenges. RESULTS: Our findings showed that the need for cultural connection for older people from culturally and linguistically diverse backgrounds increases as dementia progresses. Access to culture-specific food and music facilitated connection with their culture of origin. Many older people from culturally and linguistically diverse backgrounds with dementia reverted to their language of origin; however, the inability to communicate due to a lack of language support impacted their health and well-being, and care provision. CONCLUSIONS: Further work is needed to provide the necessary cultural experiences and language support to ensure comfort and equity in the provision of dementia care for Australians from migrant backgrounds.

Chemical restraint as behavioural euthanasia: case studies from the Royal Commission into Aged Care Quality and Safety.

BACKGROUND: The prescription of psychotropic medication to older people living with dementia in residential aged care has become an increasing concern. The use of prescription medication is often prefaced as a way of preventing harm to self and others. However, the use of such medications has been considered a way of managing some of the behavioural and psychological symptoms of dementia. Using a large secondary data set, this study aimed to identify the precursors and mediating factors that influence the use of chemical restraint of older people in residential aged care. METHODS: Publicly available documents from the Australian Royal Commission into Aged Care Quality and Safety were used as the data corpus for this study. Keywords were used to search over 7000 documents to extract a set of topic-related content. We identified the cases of seven people in respite or permanent residential aged care who had been prescribed or administered psychotropic medication under circumstances that appeared to demonstrate chemical restraint. All documents relating to the cases were collated for our data set. A descriptive case study approach to analysis was taken. RESULTS: Four key descriptive patterns were identified: labelling and limits to tolerance, pushing prescription as a solution, coverups and avoiding consent, and family's fight for liberty. Triangulation across the data and academic literature supports the findings. CONCLUSION: Our findings provide some insight into how chemical restrain happens. Featuring throughout the cases were reports of a lack of workforce capacity to care for and support residents exhibiting dementia behaviours. Prescription of psychotropic medications featured as a "first resort" care solution. Family and friends found such approaches to care unacceptable and frequently challenged the practice. Where consent for prescription was explicitly denied, more covert approaches are demonstrated. Family awareness, presence, and advocacy were key to challenging the practice of chemical restraint. Shortfalls in the capacity of the current workforce come into play here. However, workforce shortcomings can no longer mask this ubiquitous practice. Just as importantly the spotlight needs to be turned on the prescribers and the providers.

Performance of the Palliative Prognostic Index for cancer patients: A systematic review and meta-analysis.

BACKGROUND: Clinician predicted survival for cancer patients is often inaccurate, and prognostic tools may be helpful, such as the Palliative Prognostic Index (PPI). The PPI development study reported that when PPI score is greater than 6, it predicted survival of less than 3 weeks with a sensitivity of 83% and specificity of 85%. When PPI score is greater than 4, it predicts survival of less than 6 weeks with a sensitivity of 79% and specificity of 77%. However, subsequent PPI validation studies have evaluated various thresholds and survival durations, and it is unclear which is most appropriate for use in clinical practice. With the development of numerous prognostic tools, it is also unclear which is most accurate and feasible for use in multiple care settings. AIM: We evaluated PPI model performance in predicting survival of adult cancer patients based on different thresholds and survival durations and compared it to other prognostic tools. DESIGN: This systematic review and meta-analysis was registered in PROSPERO (CRD42022302679). We calculated the pooled sensitivity and specificity of each threshold using bivariate random-effects meta-analysis and pooled diagnostic odds ratio of each survival duration using hierarchical summary receiver operating characteristic model. Meta-regression and subgroup analysis were used to compare PPI performance with clinician predicted survival and other prognostic tools. Findings which could not be included in meta-analyses were summarised narratively. DATA SOURCES: PubMed, ScienceDirect, Web of Science, CINAHL, ProQuest and Google Scholar were searched for articles published from inception till 7 January 2022. Both retrospective and prospective observational studies evaluating PPI performance in predicting survival of adult cancer patients in any setting were included. The Prediction Model Risk of Bias Assessment Tool was used for quality appraisal. RESULTS: Thirty-nine studies evaluating PPI performance in predicting survival of adult cancer patients were included (n = 19,714 patients). Across meta-analyses of 12 PPI score thresholds and survival durations, we found that PPI was most accurate for predicting survival of <3 weeks and <6 weeks. Survival prediction of <3 weeks was most accurate when PPI score>6 (pooled sensitivity = 0.68, 95% CI 0.60-0.75, specificity = 0.80, 95% CI 0.75-0.85). Survival prediction of <6 weeks was most accurate when PPI score>4 (pooled sensitivity = 0.72, 95% CI 0.65-0.78, specificity = 0.74, 95% CI 0.66-0.80). Comparative meta-analyses found that PPI performed similarly to Delirium-Palliative Prognostic Score and Palliative Prognostic Score in predicting <3-week survival, but less accurately in <30-day survival prediction. However, Delirium-Palliative Prognostic Score and Palliative Prognostic Score only provide <30-day survival probabilities, and it is uncertain how this would be helpful for patients and clinicians. PPI also performed similarly to clinician predicted survival in predicting <30-day survival. However, these findings should be interpreted with caution as limited studies were available for comparative meta-analyses. Risk of bias was high for all studies, mainly due to poor reporting of statistical analyses. while there were low applicability concerns for most (38/39) studies. CONCLUSIONS: PPI score>6 should be used for <3-week survival prediction, and PPI score>4 for <6-week survival. PPI is easily scored and does not require invasive tests, and thus would be easily implemented in multiple care settings. Given the acceptable accuracy of PPI in predicting <3- and <6-week survival and its objective nature, it could be used to cross-check clinician predicted survival especially when clinicians have doubts about their own judgement, or when clinician estimates seem to be less reliable. Future studies should adhere to the reporting guidelines and provide comprehensive analyses of PPI model performance.

Relationship between residential aged care facility characteristics and breaches of the Australian aged care regulatory standards: non-compliance notices and sanctions.

OBJECTIVES: To examine the relationship between structural characteristics of Australian residential aged care facilities (RACFs) and breaches of the aged care quality standards. METHODS: Facility-level analysis of audits, sanctions and non-compliance notices of all accredited Australian RACFs between 2015/16 and 2018/19. Structural factors of interest included RACF size, remoteness, ownership type and jurisdiction. Two government data sources were joined. Each outcome was analysed to calculate time trends, unadjusted rates and relative risks. RESULTS: Non-compliance notices were imposed on 369 RACFs (13%) and 83 sanctions on 75 RACFs (3%). Compared with New South Wales (NSW), non-compliance notices were less likely in Victoria, Queensland and the Northern Territory (NT), more likely in South Australia (SA), and comparable in Western Australia (WA), Tasmania and the Australian Capital Territory (ACT). RACFs with more than 100 beds and RACFs located in remote and outer regional areas (vs. major cities) also increased the likelihood of non-compliance notices. Compared with NSW, sanctions were less likely in Victoria, Queensland, NT and WA and comparable in SA, Tasmania and ACT. Additionally, the likelihood of sanctions was higher for RACFs with more than 40 beds. For both non-compliance notices and sanctions, no significant relationship was found with RACF ownership type. CONCLUSIONS: We partially confirmed other Australian findings about the relationship between RACF structural characteristics and regulatory sanctions and reported new findings about non-compliance notices. Routine and standardised public reporting of RACF performance is needed to build trust that Australia's latest aged care reforms have led to sustained quality improvements.

An examination of primary health care nursing service evaluation using the Donabedian model: A systematic review.

Nurses are key to the delivery of global primary health care services. However, there appears to be a lack of evaluation of primary health care nursing delivery models in the published literature. This evaluation is vital to the improvement of patient experiences, national and global health outcomes, and the justification of future investment in primary health care nursing services. The purpose of this review was to explore and analyze the literature that reports on the evaluation of primary health care nursing services, to ascertain the nature and utility of these evaluation methods, and identify opportunities for future research in this area. A systematic review of the published literature was conducted following PRISMA guidelines, using the databases CINAHL, Joanna Briggs Institute, MEDLINE, and Proquest. Thirty-two articles published between 2010 and 2022 were selected. Results were organized using the Donabedian model. A paucity of research into the evaluation of nurse-led primary health care services was noted. Where evident, evaluation of primary health care nursing services tended to reflect the medical model. Medical outcomes measures dominated evaluation criteria including diagnosis rates, prescription costs, and disease outcomes. Primary health care principles such as service accessibility, cultural appropriateness, and availability were rarely used. The perspectives and experiences of nurses were not sought in service evaluation, including most of the nurse-led services. Development of an evidence-base of nursing primary health care services that are informed by the nursing experience and apply a framework of universal primary health care principles across the structure, process, and outcomes aspects of the service is recommended.

Emergency department transfers from residential aged care: what can we learn from secondary qualitative analysis of Australian Royal Commission data?

OBJECTIVES: To use publicly available submissions and evidence from the Australian Royal Commission into Aged Care Quality and Safety as data for secondary qualitative analysis. By investigating the topic of emergency department transfer from the perspective of residents, family members and healthcare professionals, we aimed to identify modifiable factors to reduce transfer rates and improve quality of care. DESIGN: The Australian Royal Commission into Aged Care Quality and Safety has made over 7000 documents publicly available. We used the documents as a large data corpus from which we extracted a data set specific to our topic using keywords. The analysis focused on submissions and hearing transcripts (including exhibits). Qualitative thematic analysis was used to interrogate the text to determine what could be learnt about transfer events from a scholarly perspective. RESULTS: Three overarching themes were identified: shortfalls and failings, reluctance and misunderstanding, and discovery and exposure. CONCLUSIONS: The results speak to workforce inadequacies that have been central to problems in the Australian aged care sector to date. We identified issues around clinical and pain assessment, lack of consideration to advance care directives and poor communication among all parties. We also highlighted the role that emergency departments play in identifying unmet clinical needs, substandard care and neglect. Given the inadequate clinical care available in some residential aged care facilities, transferring residents to a hospital emergency department may be making the best of a bad situation. If the objective of reducing unnecessary transfers to emergency departments is to be achieved, then access to appropriate clinical care is the first step.

Experiences of older immigrants living with dementia and their carers: a systematic review and meta-synthesis.

OBJECTIVE: To systematically review and synthesise evidence on the experiences of older immigrants living with dementia and their carers. DESIGN: A systematic review and meta-synthesis of qualitative studies. METHODS: Studies exploring the experiences of older immigrants living with dementia and their carers were eligible. Databases were searched including CINAHL, MEDLINE, PsycINFO, PubMed, Embase, Web of Science and Cochrane Library from January 2000 to April 2021. Quality assessment was undertaken using the Critical Appraisal Skills Programme checklist for qualitative studies. Data were then synthesised using the thematic synthesis approach. RESULTS: The results of this meta-synthesis were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement and Enhancing transparency in reporting the synthesis of qualitative research statement. A total of 3857 studies were returned from the database search. Eighteen studies were included for meta-synthesis. Five synthesised findings were identified: living with dementia and caregiving; family relationships; barriers to dementia care services; stigma and discrimination; and legal and financial issues. The experiences of living with dementia and caregiving presented multiple challenges for older immigrants living with dementia and their families. However, there seems to be very little difference between the experiences of those who have migrated to a new country and those who were born and aged in the same country, but the ability to access and use the available services is different. CONCLUSION: A lack of culturally appropriate dementia services, language barriers and dementia stigma can impede access to dementia care for older immigrants. Strategies to mitigate these barriers are urgently needed to ensure people from culturally and linguistically diverse backgrounds with dementia and their families have the information, education and support to access dementia services, in addition to research that explores the experiences of culturally and linguistically diverse populations. PROSPERO REGISTRATION NUMBER: CRD42021277913.

Measuring the 'dose' of person-centred care in aged care: Development of staff and family questionnaires.

AIMS: To develop a theoretically and psychometrically sound instrument to measure the 'dose' of person-centred care practice in long-term care. BACKGROUND: Although person-centred care has been adopted for long-term care across the world, there is a lack of theory-based instruments to measure its impact. Two questionnaires were developed to measure person-centred care from the perspectives of staff and family based on current person-centred care frameworks: Kitwood, Nolan, and Eden Alternative. METHODS: Phase I: literature review and focus groups identified potential items for the questionnaires. Phase II: academic experts, local staff, and family members of residents assessed content validity. Phase III: psychometric testing. RESULTS: A 34-item staff questionnaire (Cronbach's Alpha = 0.942) with two factors "Making person-centredness real" and "Making the environment meaningful for life and work". A 30-item family questionnaire (Cronbach's Alpha = 0.947), with three factors "Staff care about what is meaningful to my family member", "Staff know and respect my family member", and "We are all part of a family". The factors did not directly reflect the theoretical constructs from Kitwood's and Nolan's work. CONCLUSION: Two instruments, capturing the 'dose' or active practice of delivering person-centred care, have demonstrated sound psychometric properties. The study contributes to understanding the theoretical components of person-centred care. IMPACT: The study addressed the lack of robust tools to measure how much person-centred care is taking place in aged care facilities. Staff and family questionnaires were produced based on strong theoretical foundations combining concepts of prominent person-centred theories and rigorous psychometric testing. The instruments can be used to determine if person-centred care makes a difference, to compare if person-centred care changes or develops over time or between facilities. Ultimately residents, families, and staff will benefit from the ability to measure how much person-centred care residents receive.

Understanding the Relationship Between Staff and Job Satisfaction, Stress, Turnover, and Staff Outcomes in the Person-Centered Care Nursing Home Arena.

BACKGROUND: The provision of quality care in nursing home (NH) facilities is an ongoing challenge, and the literature indicates that the quality of care (QOC) is often suboptimal. While it is highly recommended that NH facilities adopt a culture of person-centered care (PCC) to ensure quality care, the outcomes of this shift on staff working in NH settings has not been well studied. The purpose of this article was to understand the theoretical relationship between staff and job satisfaction, stress, turnover, and staff outcomes in PCC NH settings, by utilizing Cohen-Mansfield's (1995) comprehensive occupational stress model. METHODS: An integrative review of the electronic databases of research published in English between 2000 and 2015 was conducted. RESULTS: A review of 11 papers suggested that job satisfaction in the nursing workforce is positively related to consistency in QOC delivery and increased quality of life among residents in NHs. Management support and PCC practices positively correlate with improved QOC, staff satisfaction, and staff retention. CONCLUSIONS: This review showed that PCC intervention and training representing the key concept of workplace resources has a positive impact on NH staff job stress and satisfaction. CLINICAL RELEVANCE: Supporting the NH workforce through PCC training is essential for promoting job satisfaction and reducing job-related stress as well as turnover, which in turn will improve QOC delivered to the residents living in NHs.

Burden and Strain among Familial Caregivers of Patients with Dementia in China.

BACKGROUND: Alzheimer's disease is one of a variety of progressive and ultimately fatal neurodegenerative diseases that are characterized by a number of nervous and mental symptoms and behavior disorders. These problems are likely to cause burden and strain on caregivers. In this study, we demonstrated the level and relationship of burden and strain among caregivers of dementia patients in China. METHODS: A total of 212 caregivers of family members with dementia responded to the survey. A 22-item of the Zarit Burden Interview and a 13-item Caregiver Strain Index (CSI) were used. RESULTS: The results showed that women comprised 88.2% of caregivers, and 58.5% of caregivers reported a level of medium burden. Over one-half of the caregivers reported a level of high strain, with the low income group being more likely to have high levels of burden and strain. CONCLUSION: Chinese familial caregivers of patients with dementia experience a moderate level of burden and a high level of strain. The main strain factors that affected the burden were changes in personal plans, time demands, and emotional adjustment.

Physical activity for people with young-onset dementia and carers: protocol for a scoping review.

BACKGROUND: Physical activity has been cited as a potential symptomatic treatment option for people living with dementia. At present, much of the research concerning physical activity and dementia considers older adults, and there are several review articles summarising the evidence in this area. Less is known about physical activity for younger people with dementia, despite the marked differences in needs and preferences between the two groups. The aim of this scoping review is to systematically explore and critically appraise the current state of the evidence regarding physical activity for people with young-onset dementia and carers. METHODS: Several electronic databases (i.e. MEDLINE, SPORTDiscus, CINAHL, Cochrane Library, PsycINFO, Applied Social Sciences Index & Abstracts (ASSIA) and Scopus), grey literature (i.e. NICE Evidence Search (UK) and targeted international organisations e.g. Alzheimer's Society (UK), Age UK, Young Dementia UK, Alzheimer's Association (USA), Dementia Australia) and trial registries (i.e. UK Clinical Trials Gateway, International Clinical Trials Registry Platform and EU Clinical Trials Register) will be searched for published and unpublished evidence regarding physical activity for people with young-onset dementia and carers. Studies included in the review will be subjected to a narrative synthesis to explore similarities and differences, both within and between studies, to identify patterns and themes and to postulate explanations for research findings (e.g. how and why certain interventions or programmes have worked (or not); factors that might have influenced the findings ). DISCUSSION: This will be the first review to systematically explore and critically appraise the current state of the evidence regarding physical activity for people with young-onset dementia and carers. It is hoped that findings from this review will be used to inform the development of future physical activity interventions, to serve as a basis for consultation with key stakeholders and to identify appropriate outcome measures relevant to people with young-onset dementia and carers. SYSTEMATIC REVIEW REGISTRATION: At present, scoping reviews are not eligible for registration on the international prospective register of systematic reviews (i.e. PROSPERO).

Person-Centered Dementia Care and Sleep in Assisted Living Residents With Dementia: A Pilot Study.

The sleep of people with dementia living in long-term care is known to be disturbed. This pre-post controlled pilot study examined the effects of a person-centered dementia care intervention on sleep in assisted living residents with dementia. The three-month intervention included in-class staff training plus supervision and support in practice. The sleep-wake patterns were measured using actigraphy for three consecutive days at baseline and postintervention. Sixteen residents from the intervention and six from the control groups completed the study. The intervention group had significantly more nighttime sleep at posttest. After adjusting for baseline, the intervention group exhibited significantly less daytime sleep and more nighttime sleep. Person-centered dementia care may be effective for improving sleep of residents with dementia.

Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study.

BACKGROUND: This paper focuses on communication between hospital staff and family carers of patients dying on acute hospital wards, with an emphasis on the family carers' perspective. The age at which people in the UK die is increasing and many continue to die in the acute hospital setting. Concerns have been expressed about poor quality end of life care in hospitals, in particular regarding communication between staff and relatives. This research aimed to understand the factors and processes which affect the quality of care provided to frail older people who are dying in hospital and their family carers. METHODS: The study used mixed qualitative methods, involving non-participant observation, semi-structured interviews and a review of case notes. Four acute wards in an English University teaching hospital formed the setting: an admissions unit, two health care of older people wards and a specialist medical and mental health unit for older people. Thirty-two members of staff took part in interviews, five members of the palliative care team participated in a focus group and 13 bereaved family carers were interviewed. In all, 245 hours of observation were carried out including all days of the week and all hours of the day. Forty-two individual patient cases were constructed where the patient had died on the wards during the course of the study. Thirty three cases included direct observations of patient care. Interviews were completed with 12 bereaved family carers of ten patient cases. RESULTS: Carers' experience of the end of life care of their relative was enhanced when mutual understanding was achieved with healthcare professionals. However, some carers reported communication to be ineffective. They felt unsure about what was happening with their relative and were distressed by the experience of their relative's end of life care. CONCLUSIONS: Establishing a concordant relationship, based on negotiated understanding of shared perspectives, can help to improve communication between healthcare professionals and family carers of their patients.