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Childhood dementias are a group of rare, fatal neurodegenerative disorders, characterised by global cognitive decline, loss of previously acquired developmental skills and behaviours and psychological symptoms of dementia (BPSD). Batten disease, or neuronal ceroid lipofuscinosis, and Sanfilippo syndrome, or mucopolysaccharidosis type III, are two of the more common forms of childhood dementia disorders worldwide. While psychosocial interventions are the best available therapeutic approach for BPSD management in adult-onset dementia, there is very limited literature or clinical experience in the context of childhood dementia. To address this gap, we conducted a descriptive case analysis of BPSD profiles, associated contributing factors and targeted psychosocial interventions in two cases with childhood dementia disorders (Sanfilippo syndrome and CLN3 (juvenile onset) Batten disease) who were referred to Dementia Support Australia, a national dementia behaviour support service in Australia. Primary BPSD identified in these disorders included physical and verbal aggression and irritability/lability. In these cases, contributing factors to the development of BPSD were not monolithic, encompassing pain, caregiver's approach and over or under-stimulation. Improvement in BPSD were observed using the Neuropsychiatric Inventory-Quesionnaire and globally noted as per the qualitative feedback reported by family and caregivers. Person-centred, multimodal psychosocial interventions were recognised as effective therapies in resolving BPSD in these cases. In conclusion, the case studies described the nature and presentation of BPSD in two common forms of childhood dementia and demonstrated the potential benefits of person-centred psychosocial interventions (delivered through national dementia-specific support programs) in alleviating BPSD such as irritability and aggression in these disorders.

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Pain recognition for culturally diverse people is complex as pain experience is subjective and influenced by cultural background. We compared the prevalence, intensity, and association of pain with neuropsychiatric symptoms (NPS) between immigrants and non-immigrants living with dementia in residential aged care homes (RACHs) who were referred to two Dementia Support Australia programs. Immigrant status was defined by the documented country of birth. Pain and NPS were assessed using PainChek® and the Neuropsychiatric Inventory, respectively. Subgroup analyses were also completed for English-speaking and non-English-speaking immigrants. A total of 17,637 referrals [immigrants, n = 6340; non-immigrants, n = 11,297] from 2792 RACHs were included. There were no significant differences for the prevalence of pain across all groups. Immigrants were slightly more likely to have moderate pain or severe pain than non-immigrants. Non-English-speaking immigrants had 0.5 points higher total pain scores on average (Cohen's d = 0.10 [0.05, 0.15], p < 0.001) than non-immigrants. Total pain score had a significant effect on total NPS severity scores in all groups. While pain prevalence is similar across groups, higher pain intensities are more common among immigrants living with dementia. Increased care staff awareness, education, and training about the potential effect of culture on pain expression is needed.

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This is a protocol for a Cochrane Review. The objectives are as follows. This paper aims to describe a protocol for a systematic review that will synthesise the qualitative evidence regarding factors influencing the implementation of non-pharmacological interventions (NPIs) for behavioural and psychological symptoms of dementia (BPSD) management in residential aged care homes (RACHs). The planned systematic review aims to answer the research question: 'What are the factors influencing the implementation of NPIs in the management of BPSD at RACHs?'. Additionally, the planned systematic review also aims to generate recommendations to guide stakeholders (e.g., clinicians and aged care staff) and policymakers in the implementation of NPIs for managing BPSD at RACHs.

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OBJECTIVE: To compare the number and severity of neuropsychiatric symptoms (NPS) and associated caregiver distress between those with and without a noted history of psychological trauma among those referred to a specialised national dementia NPS support service. METHODS: This was a 5-year retrospective observational study of records from the Dementia Support Australia NPS support service. NPS were reported by formal or informal caregivers at service entry using the Neuropsychiatric Inventory Nursing Home version or Questionnaire version. A history of psychological trauma was recorded in the person's social or medical history and/or endorsed as a contributor to NPS by a trained dementia consultant after a comprehensive clinical review. Regression was used to examine the impact of a recorded history of psychological trauma on NPS severity and associated caregiver distress, controlling for age and sex. RESULTS: Among 41,876 eligible referrals with dementia, 6% (n = 2529) had some reference in their records to a history of psychological trauma. Referrals with a recorded history of psychological trauma were rated with a higher rate of both NPS severity (mean = 12.0) and associated caregiver distress (mean = 16.5) at service entry than those without a recorded history of psychological trauma (means = 10.7 and 14.5, respectively). A recorded history of psychological trauma was associated with higher odds of psychotic symptoms, agitation/aggression, irritability, disinhibition, affective symptoms and night-time behaviours. CONCLUSIONS: Traumatic stress symptoms may represent a neglected target for intervention to reduce the impact of NPS in people with dementia.

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BACKGROUND AND OBJECTIVES: Meaningful engagement is essential for aged care residents living with dementia. Our knowledge pertaining to caring presence for residents living with dementia is limited. This study aims to understand care workers' experiences of providing care to residents, the challenges they face in being present with residents and support that enable them to be more present and provide person-centered care. RESEARCH DESIGN AND METHODS: A mixed-methods approach using surveys and semi-structured interviews with care workers from three Australian residential aged care homes was adopted. Surveys were analyzed using descriptive statistics. Open-ended survey responses and interviews were analyzed using thematic analysis. RESULTS: Twenty-six care workers completed surveys and a subset (n = 8) participated in interviews. Survey participants were largely positive about their role and reported that they loved caring for and making a difference in the lives of residents. Three themes emerged from interviews: (a) trust, connection, and the complexities of maintaining engagement; (b) time as gift and challenge; (c) organizational culture, structure and resources, and enabling carer presence. DISCUSSION AND IMPLICATIONS: Care workers in our study expressed their desire to be present with residents and stated that enablers such as meaningfully engaging with residents was one of the most enjoyable aspects of their work. Barriers such as staff shortages, competing demands of the role, and time-related impediments to being present were reported. Addressing challenges to being present with residents living with dementia is key to help avoiding poor care practices and resident outcomes.

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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.

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The International Psychogeriatric Association (IPA) has expressed significant concerns over the use of physical restraints in older people across diverse aged care settings. Following an extensive analysis of the available literature, the IPA's Early Career Network (ECN) has formulated a collection of evidence-based recommendations aimed at guiding the use of physical restraints within various care contexts and demographic groups. Physical restraints not only infringe upon human rights but also raise significant safety concerns that adversely impact the physical, psychological, social, and functional well-being of older adults. Furthermore, their effectiveness in geriatric settings remains inadequate. Given these considerations, the IPA and its ECN firmly assert that the use of physical restraints should only be considered as a final recourse in the care of older people.

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BACKGROUND: during pain assessment in persons unable to self-report, such as people living with dementia, vocalisations are commonly used as pain indicators. However, there is a lack of evidence from clinical practice regarding their diagnostic value and relationship with pain. We aimed to explore vocalisations and pain in people with dementia undergoing pain assessments in clinical practice settings. METHODS: a total of 22,194 pain assessments were reviewed in people with dementia (n = 3,144) from 34 different Australian aged care homes and two dementia specific programs. Pain assessments were conducted by 389 purposely trained health care professionals and cares using PainChek pain assessment tool. Vocalised expressions were determined based on nine vocalisation features included in the tool. Linear mixed models were used to examine the relationship of pain scores with vocalisation features. Using a single pain assessment for each of the 3,144 people with dementia, additional data analysis was conducted via Receiver Operator Characteristic (ROC) analysis and Principal Component Analysis. RESULTS: vocalisation scores increased with increasing pain intensity. High pain scores were more likely with the presence of sighing and screaming (8 times). The presence of vocalisation features varied depending on the intensity of pain. The ROC optimal criterion for the voice domain yielded a cut-off score of ≥2.0 with a Youden index of 0.637. The corresponding sensitivity and specificity were 79.7% [confidence interval (CI): 76.8-82.4%] and 84.0% (CI: 82.5-85.5%), respectively. CONCLUSION: we describe vocalisation features during presence of different levels of pain in people with dementia unable to self-report, therefore providing evidence in regard to their diagnostic value in clinical practice.

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BACKGROUND: Activity reporting of Pastoral Care Coordinators (PCCs) is often inadequate within care settings because of suboptimal analog data collection methods. This study aims to render pastoral care activity reporting more efficient through digitizing data collection in pastoral care settings. METHODS: A one-year feasibility (pilot) study of a digital tool, the "Pastoral Care Activity Tracker" (PCAT) was conducted between June 1, 2020 and May 31, 2021 at HammondCare, an Australian nonprofit healthcare organization. Feasibility was measured using electronic activity logs collected by the tool and user feedback surveys by PCCs. RESULTS: Of the 43 PCCs working in the organization, 42 (97.7%) used the PCAT tool to complete the logging of 66,298 pastoral care activities (M [SD] = 1,578.5 [827.8] activities per PCC). Most activities were logged successfully (98.3%) and took less than one minute (89.5%). Survey responses (n = 20, 46.6%) indicated many PCCs found the PCAT more convenient (n = 15, 75.0%) and easier to use (n = 10, 50.0%) than paper-based method. CONCLUSIONS: PCCs found the PCAT to be feasible, favorable, and easier to use for report generation compared to paper-based methods. The feasibility of the PCAT improved pastoral care activity data capture, as perceived by PCCs.

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Access to high-quality and safe evidence-based palliative care (PC) is important to ensure good end-of-life care for older people in residential aged care homes (RACHs). However, many barriers to providing PC in RACHs are frequently cited. The Quality End-of-Life Care (QEoLC) Project was a multicomponent intervention that included training, evidence-based tools and tele-mentoring, aiming to equip healthcare professionals and careworkers in RACHs with knowledge, skills and confidence in providing PC to residents. This study aims to understand: (1) the experiences of healthcare professionals, careworkers, care managers, planners/implementers who participated in the implementation of the QEoLC Project; and (2) the barriers and facilitators to the implementation. Staff from two RACHs in New South Wales, Australia were recruited between September to November 2021. Semi-structured interviews and thematic data analysis were used. Fifteen participants (seven health professionals [includes one nurse, two clinical educators, three workplace trainers, one clinical manager/nurse], three careworkers and five managers) were interviewed. Most RACH participants agreed that the QEoLC Project increased their awareness of PC and provided them with the skills/confidence to openly discuss death and dying. Participants perceived that the components of the QEoLC Project had the following benefits for residents: more appropriate use of medications, initiation of timely pain management and discussions with families regarding end-of-life care preferences. Key facilitators for implementation were the role of champions, the role of the steering committee, regular clinical meetings to discuss at-risk residents and mentoring. Implementation barriers included: high staff turnover, COVID-19 pandemic, time constraints, perceived absence of executive sponsorship, lack of practical support and systems-related barriers. The findings underline the need for strong leadership, supportive organisational culture and commitment to the implementation of processes for improving the quality of end-of-life care. Furthermore, the results highlight the need for codesigning the intervention with RACHs, provision of dedicated staff/resources to support implementation, and integration of project tools with existing systems for achieving effective implementation outcomes.

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INTRODUCTION: Hospitalised older adults are prone to functional deterioration, which is more evident in frail older patients and can be further exacerbated by pain. Two interventions that have the potential to prevent progression of frailty and improve patient outcomes in hospitalised older adults but have yet to be subject to clinical trials are nurse-led volunteer support and technology-driven assessment of pain. METHODS AND ANALYSIS: This single-centre, prospective, non-blinded, cluster randomised controlled trial will compare the efficacy of nurse-led volunteer support, technology-driven pain assessment and the combination of the two interventions to usual care for hospitalised older adults. Prior to commencing recruitment, the intervention and control conditions will be randomised across four wards. Recruitment will continue for 12 months. Data will be collected on admission, at discharge and at 30 days post discharge, with additional data collected during hospitalisation comprising records of pain assessment and volunteer support activity. The primary outcome of this study will be the change in frailty between both admission and discharge, and admission and 30 days, and secondary outcomes include length of stay, adverse events, discharge destination, quality of life, depression, cognitive function, functional independence, pain scores, pain management intervention (type and frequency) and unplanned 30-day readmissions. Stakeholder evaluation and an economic analysis of the interventions will also be conducted. ETHICS AND DISSEMINATION: Ethical approval has been granted by Human Research Ethics Committees at Ramsay Health Care WA|SA (number: 2057) and Edith Cowan University (number: 2021-02210-SAUNDERS). The findings will be disseminated through conference presentations, peer-reviewed publications and social media. TRIAL REGISTRATION NUMBER: ACTRN12620001173987.

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Pain is common in people living with dementia (PLWD), including those with limited verbal skills. Facial expressions are key behavioral indicators of the pain experience in this group. However, there is a lack of real-world studies to report the prevalence and associations of pain-relevant facial micro-expressions in PLWD. In this observational retrospective study, pain-related facial features were studied in a sample of 3,144 PLWD [mean age 83.3 years (SD = 9.0); 59.0% female] using the Face domain of PainChek®, a point-of-care medical device application. Pain assessments were completed by 389 users from two national dementia-specific care programs and 34 Australian aged care homes. Our analysis focused on the frequency, distribution, and associations of facial action units [AU(s)] with respect to various pain intensity groups. A total of 22,194 pain assessments were completed. Of the AUs present, AU7 (eyelid tightening) was the most frequent facial expression (48.6%) detected, followed by AU43 (closing eyes; 42.9%) and AU6 (cheek raising; 42.1%) during severe pain. AU20 (horizontal mouth stretch) was the most predictive facial action of higher pain scores. Eye-related AUs (AU6, AU7, AU43) and brow-related AUs (AU4) were more common than mouth-related AUs (e.g., AU20, AU25) during higher pain intensities. No significant effect was found for age or gender. These findings offer further understanding of facial expressions during clinical pain in PLWD and confirm the usefulness of artificial intelligence (AI)-enabled real-time analysis of the face as part of the assessment of pain in aged care clinical practice.

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OBJECTIVE: Younger-onset dementia accounts for about 5-10% of all dementias in Australia. Little data is available on neuropsychiatric symptoms in people with younger-onset dementia compared to those with older-onset dementia. This study aims to compare the types of neuropsychiatric symptoms and their clinico-demographic characteristics of people with younger-onset dementia and older-onset dementia who are referred to a specific dementia support service. METHODS: A 2-year retrospective observational cross-sectional analysis was undertaken on referrals with neuropsychiatric symptoms from Dementia Support Australia programmes. Neuropsychiatric symptoms were measured using the Neuropsychiatric Inventory total severity scores and distress scores. Contributing factors to neuropsychiatric symptoms for dementia groups were examined. Logistic regression was used to examine the relationship between individual neuropsychiatric symptoms and having older-onset dementia vs younger-onset dementia. RESULTS: Of the 15,952 referrals, about 5% (n = 729, mean age: 60.7 years, standard deviation = 5.4) were individuals with younger-onset dementia. Referrals with older-onset dementia were more likely to be female (56%), whereas referrals with younger-onset dementia were more likely to be male (54%). There was a four times greater rate of frontotemporal dementia for those with younger-onset dementia (16.0%, n = 117) compared to those with older-onset dementia (2.8%, n = 427), χ2 (1) = 366.2, p < 0.001. Referrals with younger-onset dementia were more likely to be referred from community settings and those with older-onset dementia were more likely to be from residential aged care. Overall, there was no difference in the severity and distress of neuropsychiatric symptoms between the two groups. Contributing factors to neuropsychiatric symptoms were different between the groups, with pain being more frequently endorsed for individuals with older-onset dementia whereas communication difficulties were more commonly identified for those with younger-onset dementia. CONCLUSION: Clinico-demographics of referrals with younger-onset dementia differ from those with older-onset dementia. There were some differences in the characteristics of neuropsychiatric symptoms between younger-onset dementia and older-onset dementia. Our findings have implications for service provision and support for people with dementia at different ages.

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