Mortality in dementia is predicted by older age of onset and cognitive presentation.

OBJECTIVES: Survival information in dementia is important for future planning and service provision. There have been limited Australian data investigating survival duration and risk factors associated with mortality in younger-onset dementia. METHODS: This was a cross-sectional retrospective study investigating survival in inpatients with a diagnosis of dementia admitted to a tertiary neuropsychiatry service from 1991 to 2014. The Australian Institute of Health and Welfare National Death Index was used to obtain mortality information. RESULTS: A total of 468 inpatients were identified, of which 75% had symptom onset at ⩽65 years of age (defined as younger-onset dementia). Dementia was categorised into four subtypes, Alzheimer's dementia, frontotemporal dementia, vascular dementia and other dementias; 72% of the patients had died. Overall median survival duration was 10.6 years with no significant differences in duration within the dementia subtypes (p = 0.174). Survival in older-onset dementia (symptom onset at >65 years of age) was about half of that in younger-onset dementia (median survival 6.3 years compared to 12.7 years, respectively). Independent predictors of mortality were having older-onset dementia (hazard ratio: 3.2) and having initial presenting symptoms being cognitive in nature (hazard ratio: 1.5). Females with an older-onset dementia had longer survival compared to males with an older-onset dementia, and this was reversed for younger-onset dementia. Older-onset dementia and younger-onset dementia conferred 3 and 6 times, respectively, increased risk of death compared to the general population. CONCLUSION: This is the largest Australian study to date investigating survival and risk factors to mortality in dementia. We report important clinical information to patients with dementia and their families about prognosis which will assist with future planning. Our findings suggest that for both older-onset dementia and younger-onset dementia, 'new onset' psychiatric symptoms precede the cognitive symptoms of a neurodegenerative process. This, and sex differences in survival depending on the age of onset of the dementia warrant further investigation.

Cognitive training for people with mild to moderate dementia.

BACKGROUND: Cognitive impairment, a defining feature of dementia, plays an important role in the compromised functional independence that characterises the condition. Cognitive training (CT) is an approach that uses guided practice on structured tasks with the direct aim of improving or maintaining cognitive abilities. OBJECTIVES: • To assess effects of CT on cognitive and non-cognitive outcomes for people with mild to moderate dementia and their caregivers.• To compare effects of CT with those of other non-pharmacological interventions, including cognitive stimulation or rehabilitation, for people with mild to moderate dementia and their caregivers.• To identify and explore factors related to intervention and trial design that may be associated with the efficacy of CT for people with mild to moderate dementia and their caregivers. SEARCH METHODS: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group Specialised Register, on 5 July 2018. ALOIS contains records of clinical trials identified through monthly searches of several major healthcare databases and numerous trial registries and grey literature sources. In addition to this, we searched MEDLINE, Embase, PsycINFO, CINAHL, LILACS, Web of Science Core Collection, ClinicalTrials.gov, and the World Health Organization's trials portal, ICTRP, to ensure that searches were comprehensive and up-to-date. SELECTION CRITERIA: We included randomised controlled trials (RCTs) that described interventions for people with mild to moderate dementia and compared CT versus a control or alternative intervention. DATA COLLECTION AND ANALYSIS: We extracted relevant data from published manuscripts and through contact with trial authors if required. We assessed risk of bias using the Cochrane 'Risk of bias' tool. We divided comparison conditions into active or passive control conditions and alternative treatments. We used a large number of measures and data to evaluate 19 outcomes at end of treatment, as well as 16 outcomes at follow-up in the medium term; we pooled this information in meta-analyses. We calculated pooled estimates of treatment effect using a random-effects model, and we estimated statistical heterogeneity using a standard Chi² statistic. We graded the evidence using GradePro. MAIN RESULTS: The 33 included trials were published between 1988 and 2018 and were conducted in 12 countries; most were unregistered, parallel-group, single-site RCTs, with samples ranging from 12 to 653 participants. Interventions were between two and 104 weeks long. We classified most experimental interventions as 'straight CT', but we classified some as 'augmented CT', and about two-thirds as multi-domain interventions. Researchers investigated 18 passive and 13 active control conditions, along with 15 alternative treatment conditions, including occupational therapy, mindfulness, reminiscence therapy, and others.The methodological quality of studies varied, but we rated nearly all studies as having high or unclear risk of selection bias due to lack of allocation concealment, and high or unclear risk of performance bias due to lack of blinding of participants and personnel.We used data from 32 studies in the meta-analysis of at least one outcome. Relative to a control condition, we found moderate-quality evidence showing a small to moderate effect of CT on our first primary outcome, composite measure of global cognition at end of treatment (standardised mean difference (SMD) 0.42, 95% confidence interval (CI) 0.23 to 0.62), and high-quality evidence showing a moderate effect on the secondary outcome of verbal semantic fluency (SMD 0.52, 95% CI 0.23 to 0.81) at end of treatment, with these gains retained in the medium term (3 to 12 months post treatment). In relation to many other outcomes, including our second primary outcome of clinical disease severity in the medium term, the quality of evidence was very low, so we were unable to determine whether CT was associated with any meaningful gains.When compared with an alternative treatment, we found that CT may have little to no effect on our first primary outcome of global cognition at end of treatment (SMD 0.21, 95% CI -0.23 to 0.64), but the quality of evidence was low. No evidence was available to assess our second primary outcome of clinical disease severity in the medium term. We found moderate-quality evidence showing that CT was associated with improved mood of the caregiver at end of treatment, but this was based on a single trial. The quality of evidence in relation to many other outcomes at end of treatment and in the medium term was too low for us to determine whether CT was associated with any gains, but we are moderately confident that CT did not lead to any gains in mood, behavioural and psychological symptoms, or capacity to perform activities of daily living. AUTHORS' CONCLUSIONS: Relative to a control intervention, but not to a variety of alternative treatments, CT is probably associated with small to moderate positive effects on global cognition and verbal semantic fluency at end of treatment, and these benefits appear to be maintained in the medium term. Our certainty in relation to many of these findings is low or very low. Future studies should take stronger measures to mitigate well-established risks of bias, and should provide long-term follow-up to improve our understanding of the extent to which observed gains are retained. Future trials should also focus on direct comparison of CT versus alternative treatments rather than passive or active control conditions.

Huntington's disease: Neuropsychiatric manifestations of Huntington's disease.

OBJECTIVES: Huntington's disease (HD) is a profoundly incapacitating, and ultimately fatal, neurodegenerative disease. HD is presently incurable, so the current goal is to allow affected individuals to live as well as possible with the illness, to maximise functional independence and quality of life for the person with HD, their carers and family members. This clinical update review focuses on the common neuropsychiatric manifestations in HD, and outlines and evaluates the various neuropsychiatric facets of HD, including the aetiology, symptoms and diagnosis. CONCLUSIONS: Neuropsychiatric symptoms can precede the classic motor clinical symptoms of HD (prodromal HD) by decades, and cause significant functional impairment. HD provides key insights and understanding into the organic psychiatric disorders, including contemporary clinical insights into the process of neurodegeneration and manifestation of neuropsychiatric symptoms.

Co-designing a dementia-specific education and training program for home care workers: The 'Promoting Independence Through Quality Dementia Care at Home' project.

Undertaking co-design with the end users of services has rapidly evolved as the best-practice approach to program design, development and implementation. Increased interest in using participatory co-design in dementia care has drawn attention to the need for evidence-informed methods for facilitating the meaningful involvement of people with dementia and their family carers in co-design activities. The aim of this paper is to describe the co-design framework used in the co-design of a dementia specialist training program for home care workers. The Promoting Independence Through quality dementia Care at Home program is a successful example of co-design methodology used across multiple project stages and with various stakeholder groups, including people living with dementia, family carers, home care workers, managers and researchers. Co-design methods were tailored to each stage, purpose, and stakeholder group, and to facilitate the involvement of people living with dementia. Findings provide unique insights into optimising input from co-design partners, including people living with dementia; the methodology, conditions and requirements for participants to co-design and implement ideas; and perspectives on the enablers and challenges of using co-design in this population. In this paper, we present a comprehensive approach for involving people living with dementia as active and equal contributors in inclusive and meaningful participatory co-design.

Language Translation Apps in Health Care Settings: Expert Opinion.

BACKGROUND: Currently, over 300 languages are spoken in Australian homes. People without proficient English from non-English speaking countries may not receive equitable care if their health care workers do not speak their primary language. Use of professional interpreters is considered the gold standard; however, for a variety of reasons, it is often limited to key aspects of care such as diagnosis and consent. With the emergence of mobile technologies, health care workers are increasingly using digital translation tools to fill this gap. However, many of these technologies have not been developed for health care settings and their use has not been evaluated. OBJECTIVE: This study aimed to evaluate iPad-compatible language translation apps to determine their suitability for enabling everyday conversations in health care settings. METHODS: Translation apps were identified by searching the Apple iTunes Store and published and grey literature. Criteria for inclusion were that the apps were available at no cost, able to translate at least one of the top 10 languages spoken in Australia, and available for use on iPad. Apps that met inclusion criteria were reviewed in 2 stages. Stage 1 was the feature analysis conducted by 2 independent researchers, where apps were evaluated for offline use, input and output methods, and number of languages. Stage 2 was the analysis of suitability for everyday communication in the health care setting, conducted by 2 independent professionals with expertise in translation and cross-cultural communication. Apps that enabled key aspects of care normally within the realm of professional interpreters, such as assessment, treatment and discharge planning, and seeking consent for medical treatments, were considered unsuitable. RESULTS: In total, 15 apps were evaluated. Of these, 8 apps contained voice-to-voice and voice-to-text translation options. In addition, 6 apps were restricted to using preset health phrases, whereas 1 app used a combination of free input and preset phrases. However, 5 apps were excluded before stage 2. In addition, 6 of the 10 remaining apps reviewed in stage 2 were specifically designed for health care translation purposes. Of these, 2 apps were rated as suitable for everyday communication in the health care setting-culturally and linguistically diverse Assist and Talk To Me. Both apps contained simple and appropriate preset health phrases and did not contain conversations that are normally within the realm of professional interpreters. CONCLUSIONS: All iPad-compatible translation apps require a degree of caution and consideration when used in health care settings, and none should replace professional interpreters. However, some apps may be suitable for everyday conversations, such as those that enable preset phrases to be translated on subject matters that do not require a professional interpreter. Further research into the use of translation technology for these types of conversations is needed.