Family carers of people living with dementia and discussion board engagement in the Understanding Dementia Massive Open Online Course.

OBJECTIVES: This study compared discussion board involvement between family carers and non-carers in the Understanding Dementia Massive Open Online Course (UD-MOOC). METHODS: A mixed methods observational cohort study of family carers and non-carers was undertaken over the February-April 2020 UD-MOOC. Discussion board engagement was measured as number of posts and replies and examined longitudinally using mixed models. Discussion topics were explored through structural topic models (STM). Subsequently, thematic analysis of STM derived-topic exemplars was conducted to contextualise these discussions. RESULTS: Family carers were (n = 2320) found to post (p < 0.001) and reply (p = 0.029) significantly more often than non-carers (n = 2392). Of the 32-STM derived-topics, meaningful activities (mean Δ = 0.007, 95% CrI [0.005-0.100]), personal stories of diagnosis (mean Δ = 0.007, 95% CrI [0.005-0.009]), and family history of dementia (mean Δ = 0.006, 95% CrI [0.004-0.008]) were discussed significantly more frequently by family carers compared to non-carers. CONCLUSION: These results may reflect underlying motivational differences and circumstantial relevance. Perhaps the greater engagement by family carers is related to a sense of having inadequate relevant offline social resources, where engagement in the UD-MOOC discussion boards may serve as means to share experiences with others.

Communication in dementia care: Experiences and needs of carers.

To ensure the well-being, quality of life and quality of care of people living with dementia, carers need to have the necessary communication knowledge and skills to respond appropriately to a person's changing abilities and needs. Understanding carers' communication experiences and needs in the context of dementia care is an important step in enabling effective education and support for carers. This study aimed to investigate communication challenges faced by carers and their coping strategies, influencing factors, and communication education and training needs. The sample involved 258 carers enrolled in an online dementia care program, and data were collected using a 16-item questionnaire. Descriptive statistics and non-parametric inferential statistics, including Chi-square, Mann-Whitney U, Kruskal-Wallis and Spearman's rho, were used to analyse the data. The participants reported experiencing a range of challenges in communicating with people living with dementia and employing various strategies in addressing these challenges, either independently or with the support of others. Improvements in a number of factors would be beneficial for carers, including more time for caring, more care and social support, as well as enhanced skills in communicating with people living with dementia. A large majority of the participants indicated their need for education or training in communication knowledge and skills, and those with higher learning needs were likely to be younger, care workers and other health professionals, and those with less care experience. Recommendations are made for future research and efforts to maximise effective education and support for carers of people living with dementia.

What do health professionals need to know about young onset dementia? An international Delphi consensus study.

BACKGROUND: People with young onset dementia (YOD) have unique needs and experiences, requiring care and support that is timely, appropriate and accessible. This relies on health professionals possessing sufficient knowledge about YOD. This study aims to establish a consensus among YOD experts about the information that is essential for health professionals to know about YOD. METHODS: An international Delphi study was conducted using an online survey platform with a panel of experts (n = 19) on YOD. In round 1 the panel individually responded to open-ended questions about key facts that are essential for health professionals to understand about YOD. In rounds 2 and 3, the panel individually rated the collated responses in terms of their importance in addition to selected items from the Dementia Knowledge Assessment Scale. The consensus level reached for each statement was calculated using the median, interquartile range and percentage of panel members who rated the statement at the highest level of importance. RESULTS: The panel of experts were mostly current or retired clinicians (57%, n = 16). Their roles included neurologist, psychiatrist and neuropsychiatrist, psychologist, neuropsychologist and geropsychologist, physician, social worker and nurse practitioner. The remaining respondents had backgrounds in academia, advocacy, or other areas such as law, administration, homecare or were unemployed. The panel reached a high to very high consensus on 42 (72%) statements that they considered to be important for health professionals to know when providing care and services to people with YOD and their support persons. Importantly the panel agreed that health professionals should be aware that people with YOD require age-appropriate care programs and accommodation options that take a whole-family approach. In terms of identifying YOD, the panel agreed that it was important for health professionals to know that YOD is aetiologically diverse, distinct from a mental illness, and has a combination of genetic and non-genetic contributing factors. The panel highlighted the importance of health professionals understanding the need for specialised, multidisciplinary services both in terms of diagnosing YOD and in providing ongoing support. The panel also agreed that health professionals be aware of the importance of psychosocial support and non-pharmacological interventions to manage neuropsychiatric symptoms. CONCLUSIONS: The expert panel identified information that they deem essential for health professionals to know about YOD. There was agreement across all thematic categories, indicating the importance of broad professional knowledge related to YOD identification, diagnosis, treatment, and ongoing care. The findings of this study are not only applicable to the delivery of support and care services for people with YOD and their support persons, but also to inform the design of educational resources for health professionals who are not experts in YOD.

Impact of dementia literacy interventions for non-health-professionals: systematic review and meta-analysis.

OBJECTIVES: To assess evidence regarding the effects of interventions aimed at improving dementia literacy for different groups of non-health-professionals. METHODS: A systematic search for relevant interventions was conducted using a range of online databases (e.g. CINAHL, Embase, Medline, ProQuest, and PsycINFO) and hand-searching of reference lists. Eligible interventions were identified based on predefined inclusion/exclusion criteria and methodological quality criteria. Meta analyses were performed using a random-effects model. RESULTS: The final review included 14 interventions, which were either randomised controlled trials or non-randomised controlled trials. The interventions had varied contents, approaches, settings, and outcome measures. Evidence of improved dementia literacy in various aspects was found, and the intervention effects were strongest on knowledge of dementia. DISCUSSION: There is evidence for the positive impact of dementia literacy interventions on different groups of non-health-professionals. Best practices in intervention contents, approaches, and outcome measures should be examined to guide future interventions.

Consumer Access, Appraisal, and Application of Services and Information for Dementia (CAAASI-Dem): a validation study.

Objectives: The Consumer Access, Appraisal, and Application of Services and Information for Dementia (CAAASI-Dem) was developed to examine individuals' self-assessed confidence in their ability to access, appraise and use dementia services and information. The CAAASI-Dem is the only tool to date to measure this crucial component of dementia literacy. This study was designed to validate its structural validity.Method: Data was collected from 3277 participants enrolled in an on-line dementia course. The five-factor structure of the CAAASI-Dem, which was derived from a previous exploratory factor analysis, was evaluated using confirmatory factor analysis. Internal reliability, convergent and divergent validity, and known-groups validity were assessed. Results: The five-factor model demonstrated good fit with the observed data with the removal of 2 items and movement of 1 item across the factors. The resultant 24-item five-factor CAAASI-Dem showed very good sub-scale internal reliability and satisfactory convergent and divergent validity. There was good discrimination between groups of participants with different levels of care experience.Conclusion: The results provided evidence for the 24-item CAAASI-Dem as a valid and reliable five-dimensional scale. Limitations of the study are discussed, and recommendations are made for future research and practice.

Predictors of dementia knowledge in a rural general public sample.

OBJECTIVES: To investigate dementia knowledge within a rural Australian general public cohort and understand demographic predictors of knowledge in this population. DESIGN: A cross-sectional study comprising quantitative surveys. SETTING: 321 participants were recruited from the Tasmanian general public (February-September 2017). PARTICIPANTS: 28% of participants were from remote or outer regional postcodes; the remainder were from inner regional areas. The median age was 46 years; 35% were male. 30% had participated in prior dementia education, 29% had worked with people living with dementia, and 23% had no identified personal experience of people living with dementia. INTERVENTIONS: No interventions were conducted as part of this study. MAIN OUTCOME MEASURES: Dementia knowledge was assessed using the Dementia Knowledge Assessment Scale. Demographic variables were also collected. RESULTS: Mean dementia knowledge was moderate and participants scored highest on the care considerations subscale. Those with personal experience with a person living with dementia scored significantly higher on all subscales, and overall, than those without. Dementia education, general education, and previous work, care or close relationship with people living with dementia were all significant predictors in a regression model explaining nearly a third of the variance in overall dementia knowledge. CONCLUSION: While personal experience of dementia improves knowledge of the condition, dementia education is the most important predictor. Deficits identified in knowledge of risk factors, and incomplete knowledge about aspects important to quality care, suggest a need for further education for the general public, particularly in the light of the rising prevalence of dementia in ageing rural populations.

Measuring consumer access, appraisal and application of services and information for dementia (CAAASI-Dem): a key component of dementia literacy.

BACKGROUND: The ability to locate, navigate and use dementia services and information, either for oneself or in providing care for others, is an essential component of dementia literacy. Despite dementia literacy being understood to be inadequate in many settings, no validated instrument exists to measure these elements. Here we describe the development and preliminary validation of the Consumer Access, Appraisal and Application of Services and Information for Dementia (CAAASI-Dem) tool. METHODS: Items were adapted from existing health literacy tools and guided by discussion posts in the Understanding Dementia Massive Open Online Course (UDMOOC). Following expert review and respondent debriefing, a modified CAAASI-Dem was administered to UDMOOC participants online. On the basis of descriptive statistics, inter-item and item total correlations and qualitative feedback, this was further refined and administered online to a second cohort of UDMOOC participants. Exploratory factor analysis identified underlying factor structure. Items were retained if they had significant factor loadings on one factor only. Each factor required at least three items with significant factor loadings. Internal consistency of factors in the final model was evaluated using Cronbach's alpha coefficients. RESULTS: From a pool of 70 initial items with either a 5-point Likert scale (Not at all confident - Extremely confident; or Strongly agree - Strongly disagree) or a binary scale (Yes - No), 65 items were retained in CAAASI-Dem-V1. Statistical and qualitative analysis of 1412 responses led to a further 34 items being removed and 11 revised to improve clarity. The 31 item CAAASI-Dem-V2 tool was subsequently administered to 3146 participants, one item was removed due to redundancy and EFA resulted in the removal of an additional 4 items and determination of a five factor structure: Evaluation and engagement; Readiness; Social supports; Specific dementia services; and Practical aspects. CONCLUSIONS: The five factors and 26 constituent items in CAAASI-Dem align with functional, critical, and communicative aspects of dementia health literacy from the perspective of the carer. As a screening tool for people living with dementia and their carers, CAAASI-Dem potentially provides a means to determine support needs and may be a key component of the dementia literacy assessment toolbox.

Building dementia knowledge globally through the Understanding Dementia Massive Open Online Course (MOOC).

The prevalence of dementia is escalating world-wide and knowledge deficits remain a barrier to community inclusiveness and quality care. The need for quality, comprehensive education has been identified as a key priority for global action plans on dementia. The Understanding Dementia Massive Open Online Course (UDMOOC) offers the potential to improve dementia knowledge globally. Completion rates for the UDMOOC (2016-2017) were on average 42% of enrolments, and 69% of participants care or have cared for people with dementia. The current study shows baseline dementia knowledge was positively related to previous learning about dementia from various types of exposure to the condition including having family members and/or working with people with the condition, and having undertaken dementia education. However, knowledge of all participant groups showed substantial improvements after completion of the UDMOOC. This was shown regardless of educational background and previous experience of dementia, and group differences after completing the UDMOOC were minimised. The UDMOOC is therefore an effective knowledge translation strategy to improve dementia knowledge for a diverse, international learner group.

General practitioners attitude and confidence scale for dementia (GPACS-D): confirmatory factor analysis and comparative subscale scores among GPs and supervisors.

BACKGROUND: The attitude of General Practitioner's (GP's) towards dementia and confidence in their clinical abilities impacts on diagnosis rates and management of the condition. The purpose of the present research is to refine and confirm the reliability and validity of the General Practitioner Attitudes and Confidence Scale for Dementia (GPACS-D) as a tool to measure confidence and attitude. METHODS: A sample of 194 GP volunteers attending dementia education workshops were recruited to complete the GPACS-D before and after the workshop. Volunteer respondents comprised both GP Registrars and GP Supervisors. Analyses included Confirmatory Factor Analysis (CFA), measures of internal consistency, Pearson correlations, and a comparison of subscale scores between cohorts (T-Test for independent samples). RESULTS: Findings of the CFA support a 15-item, 3-factor model with four items removed due to poor performance and one item moved between factors. The resultant model exhibited good fit (x2 = 103.88; p = .105; RMSEA = .032; PCLOSE = .915; CFI = .967; TLI = 960), with acceptable internal consistency. Subscales exhibited clear discriminant validity with no underlying relationships between subscales. Finally, total and subscale scores exhibited good discrimination between groups who would be expected to score differently based on experience and level of exposure to dementia. CONCLUSION: The 15-item, 3-subscale GPACS-D is a reliable and valid measure of GP confidence and attitudes toward dementia. The subscales clearly distinguish between groups who might be expected to score differently from each other based on their training or professional experiences. The psychometric properties of the GPACS-D support its use as a research tool.

Communication training and its effects on carer and care-receiver outcomes in dementia settings: A systematic review.

AIMS AND OBJECTIVES: To review communication interventions that aim to improve regular care interactions between people with dementia and their carers in various settings; and to examine the impact of such interventions on both carer and care-receiver outcomes. BACKGROUND: Effective communication is imperative to ensure quality of care for people living with dementia. Due to neurodegenerative changes, people with dementia encounter ongoing and progressive difficulties in both understanding and expressing themselves. This in turn creates challenges for carers, which highlights the need for equipping them with necessary communication skills to respond to the specific communication needs of people with dementia. DESIGN: Systematic review and meta-analysis. METHOD: Medline, Embase, CINAHL, ProQuest and PsycINFO databases were searched for eligible interventions with any date of the publication. Hand searching was also conducted through reviewing the reference lists of relevant articles. The screening and selection of studies were based on the inclusion/exclusion criteria for eligibility and the methodological quality assessment checklist. Random-effects meta-analyses were conducted on comparable quantitative data. The review is reported following the PRISMA reporting guidelines. RESULTS: Seventeen studies were included in the final review, including 12 randomised controlled trials (RCTs), three nonrandomised controlled trials (NRCTs) and two controlled before-after interventions. The intervention designs, settings and outcome measures were varied. The findings suggest that the communication training had a positive impact on both carer and care-receiver outcomes, albeit to different degrees. The intervention effects were found to be strongest on carer communication skills and knowledge. CONCLUSION: There is solid evidence for the positive impact of communication training on the skills and knowledge of carers. More research is needed regarding the effects of such educational interventions on carer physio-psychological outcomes and care-receiver neuropsychiatric symptoms. It is important to establish best practices in training design, develop validated outcome measures and adopt consistent reporting approaches. RELEVANCE TO CLINICAL PRACTICE: The increasing global prevalence of people with dementia manifests across clinical and community contexts. The profound impact of dementia on communication and associated care raises the imperative for enhanced health worker and carer communication skills to meet the needs of this particular client group. The findings of this review indicate that educational interventions incorporating face-to-face and diverse instructional delivery methods in dementia communication showed positive outcomes for communication skills in all carer groups and warrant inclusion as strategies in dementia training.

Best intentions or best practice? A case study of the nutritional needs and outcomes of a person with dementia living in a residential aged care home.

AIMS: To evaluate the nutritional status and needs of a person with dementia living in an aged care home, including identification of barriers to, and effective strategies for, the provision of person-centred care. BACKGROUND: Nutrition and hydration care are integral to quality of life for adults with dementia, but there is little research on whether staff knowledge around effective care strategies for residents is translated into optimal care. DESIGN: Focused ethnographic single-case design. METHODS: The perspectives of the resident, her prime family member, and six care staff were triangulated through interviews, observation, document audit, and medical file review to investigate the resident's nutrition and hydration status and needs (October 2014-April 2015). RESULTS: During 3 years in care, this resident had lost weight steadily. Staff appeared attentive but did not maintain a systematic record of body mass index. At meals, staff encouraged eating but used ineffective strategies. Food was not served in ways that facilitated active participation. Eating and drinking were structured as tasks to be completed rather than activities to be enjoyed. CONCLUSION: This instrumental case study identified a task-oriented, rather than person-centred, approach to nutrition and hydration care, adversely affecting the resident's nutritional health and capability to participate actively.

How is palliative care understood in the context of dementia? Results from a massive open online course.

BACKGROUND: A palliative approach to the care of people with dementia has been advocated, albeit from an emergent evidence base. The person-centred philosophy of palliative care resonates with the often lengthy trajectory and heavy symptom burden of this terminal condition. AIM: To explore participants' understanding of the concept of palliative care in the context of dementia. The participant population took an online course in dementia. DESIGN: The participant population took a massive open online course on 'Understanding Dementia' and posted answers to the question: 'palliative care means …' We extracted these postings and analysed them via the dual methods of topic modelling analysis and thematic analysis. SETTING/PARTICIPANTS: A total of 1330 participants from three recent iterations of the Understanding Dementia Massive Open Online Course consented to their posts being used. Participants included those caring formally or informally for someone living with dementia as well as those with a general interest in dementia Results: Participants were found to have a general awareness of palliative care, but saw it primarily as terminal care, focused around the event of death and specialist in nature. Comfort was equated with pain management only. Respondents rarely overtly linked palliative care to dementia. CONCLUSIONS: A general lack of palliative care literacy, particularly with respect to dementia, was demonstrated by participants. Implications for dementia care consumers seeking palliative care and support include recognition of the likely lack of awareness of the relevance of palliative care to dementia. Future research could access online participants more directly about their understandings/experiences of the relationship between palliative care and dementia.

Staff awareness of food and fluid care needs for older people with dementia in residential care: A qualitative study.

AIMS AND OBJECTIVES: To examine awareness of aged care home staff regarding daily food and fluid care needs of older people with dementia. BACKGROUND: Older people in residential care frequently are malnourished, and many have dementia. Staff knowledge of the food and fluid needs of people with dementia is limited. Qualitative research on this topic is scarce but can provide insight into how nutrition and hydration care may be improved. DESIGN: Qualitative, interview-based study. METHODS: Eleven staff in a range of positions at one care home were interviewed regarding their perceptions of current and potential food/fluid care practices. Transcripts were coded and analysed thematically. RESULTS: Key food and fluid issues reported by these staff members were weight loss and malnutrition, chewing and swallowing difficulties (dysphagia), and inadequate hydration. Staff identified a number of current care practices that they felt to be effective in facilitating older people's food and fluid intake, including responsiveness to their needs. Staff suggestions to facilitate food and fluid intake centred on improved composition and timing of meals, enhanced physical and social eating environment, and increased hydration opportunities. Staff commented on factors that may prevent changes to care practices, particularly the part-time workforce, and proposed changes to overcome such barriers. CONCLUSIONS: Staff were aware of key food and fluid issues experienced by the older people in their care and of a range of beneficial care practices, but lacked knowledge of many promising care practices and/or how to implement such practices. RELEVANCE TO CLINICAL PRACTICE: Staff need to be supported to build on their existing knowledge around effective food and fluid care practices. The numerous ideas staff expressed for changing care practices can be leveraged by facilitating staff networking to work and learn together to implement evidence-based change.

Wicking teaching aged care facilities program: Innovative Practice.

This paper reports on the design of a program that aims to prototype teaching aged care facilities in Australia. Beginning in two Tasmanian residential aged care facilities, the intent of the program is to support large-scale inter-professional student clinical placements, positively influence students' attitudes toward working in aged care and drive development of a high-performance culture capable of supporting evidence-based aged care practice. This is important in the context of aged care being perceived as an unattractive career choice for health professionals, reinforced by negative clinical placement experiences. The Teaching Aged Care Facilities Program features six stages configured around an action research/action learning method, with dementia being a key clinical focus.

Knowledge of Dementia: Do family members understand dementia as a terminal condition?

Current research identifies advanced dementia to be the terminal phase of this progressive and incurable condition. However, there has been relatively little investigation into how family members of people with advanced dementia understand their relative's condition. In this article, we report on semi-structured interviews with 10 family members of people with advanced dementia, in a residential aged care facility. Using a qualitative, descriptive design, we explored family members' understandings of dementia, whether they were aware that it was a terminal condition, and the ways they developed their understandings. Findings revealed that the majority of family members could not recognize the terminal nature of dementia. Relying on predominantly lay understandings, they had little access to formal information and most failed to conceptualize a connection between dementia and death. Moreover, family members engaged in limited dialogue with aged care staff about such issues, despite their relatives being in an advanced stage of the disease. Findings from our study suggest that how family members understand their relative's condition requires greater attention. The development of staff/family partnerships that promote shared communication about dementia and dying may enhance family members' understandings of the dementia trajectory and the types of decisions they may be faced with during the more advanced stages of the disease.

Development and preliminary psychometric properties of the General Practitioner Attitudes and Confidence Scale (GPACS-D) for dementia.

BACKGROUND: International evidence suggests that dementia is under-diagnosed in the community and that General Practitioners (GPs) are often reluctant to engage to their fullest capability with patients who exhibit cognitive symptoms. This is potentially reflected by a lack of GP knowledge about the syndrome. However, it is also recognised that attitudes and confidence are important in relation to how and to what extent a GP approaches a person with dementia. This research sought to develop a reliable and valid measure of GPs attitudes and confidence towards dementia. METHODS: The General Practitioner Attitudes and Confidence Scale for Dementia (GPACS-D) was developed via a four stage process, including initial content development, pretesting, pilot testing and psychometric evaluation, including Principal Component Analysis (PCA). Participants were recruited for pre-testing (n = 12), test-retest (n = 55), and dementia workshop pre-and post-education evaluation (n = 215). RESULTS: The process of scale development and psychometric evaluation resulted in a 20-item measure of GP attitudes and confidence towards dementia, with 4 items removed due to poor reliability, low sensitivity, or lack of model fit. Among 55 respondents who completed the scale on two occasions with no intervening education, Kappa coefficient scores per item ranged from fair (n = 2, candidates for removal), moderate (n = 5), substantial (n = 15), and almost perfect (n = 2). A test of the sensitivity of item scores to change following dementia education among 215 GPs indicated that, with the exception of one item, all scale responses exhibited significant differences between pre-and post-workshop scores, indicating acceptable sensitivity. With one further item removed due to a low communality score, the final PCA undertaken with the remaining 20 items supports a four-component solution, which accounted for 51.9 % of the total variance. CONCLUSION: The GPACS-D provides a reliable and preliminarily valid measure of GP attitudes and confidence towards dementia. The scales provide useful information for medical educators and researchers who are interested in evaluating and intervening in GP perceptions of the syndrome and their capacity to provide effective care.