Monica Cations

Time to diagnosis in young-onset dementia and its determinants: the INSPIRED study

The objective of this study is to identify factors determining the time to diagnosis for young‐onset dementia (YOD), defined as dementia with symptom onset before age 65 years, by mapping the diagnostic pathways.

What does the general public understand about prevention and treatment of dementia? A systematic review of population-based surveys

Objectives To synthesise results of population surveys assessing knowledge and attitudes about prevention and treatment of dementia. Methods MEDLINE, EMBASE, PsycINFO, and grey literature were searched for English language entries published between 2012 and May 2017. Survey questions were grouped using an inductive approach and responses were pooled. Results Thirty-four eligible studies and four grey literature items were identified. Surveys were conducted in Europe, the US, Eastern Asia, Israel, and Australia. Nearly half of respondents agreed that dementia is a normal and non-preventable part of ageing, but belief in the potential for prevention may be improving over time. The role of cardiovascular risk factors was poorly understood overall. Less than half of respondents reported belief in the availability of a cure for dementia. The value of seeking treatment was highly endorsed. Conclusions Results suggest that knowledge about the potential for dementia prevention and treatment remains poor but may be improving over time. Knowledge among those living in low- and middle-income countries are largely unknown, presenting challenges for the development of National action plans consistent with World Health Organization directives.

Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

Background/Aims Despite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters. Methods Eighty-six people with consensus-confirmed YOD (mean onset age 55.3 years) and/or their primary supporter participated in quantitative interviews, and 50 also participated in one of seven qualitative focus groups. Interview participants reported levels of community service use and reasons for non-use, functional impairment, behavioural and psychological symptoms, supporter burden, social network, and informal care provision. Focus group participants expanded on reasons for non-use and aspects of an ideal service. Results Although at least one community service was recommended to most participants (96.8%), 66.7% chose not to use one or more of these. Few of the clinical or demographic factors included here were related to service use. Qualitative analyses identified that lack of perceived need, availability, and YOD-specific barriers (including ineligibility, unaffordability, lack of security, lack of childcare) were commonly reported. Five aspects of an ideal service were noted: unique, flexibile, affordable, tailored, and promoting meaningful engagement. Conclusion People with YOD and their families report that formal community services do not meet their personal and psychological needs. Researchers can provide ongoing assessment of program feasibility, suitability, and generalisability.

Halting Antipsychotic Use in Long-Term care (HALT): a single-arm longitudinal study aiming to reduce inappropriate antipsychotic use in long-term care residents with behavioral and psychological symptoms of dementia

BACKGROUND Inappropriate use of antipsychotic medications to manage Behavioral and Psychological Symptoms of Dementia (BPSD) continues despite revised guidelines and evidence for the associated risks and side effects. The aim of the Halting Antipsychotic Use in Long-Term care (HALT) project is to identify residents of long-term care (LTC) facilities on antipsychotic medications, and undertake an intervention to deprescribe (or cease) these medicines and improve non-pharmacological behavior management. METHODS LTC facilities will be recruited across Sydney, Australia. Resident inclusion criteria will be aged over 60 years, on regular antipsychotic medication, and without a primary psychotic illness or very severe BPSD, as measured using the Neuropsychiatric Inventory (NPI). Data collection will take place one month and one week prior to commencement of deprescribing; and 3, 6 and 12 months later. During the period prior to deprescribing, training will be provided for care staff on how to reduce and manage BPSD using person-centered approaches, and general practitioners of participants will be provided academic detailing. The primary outcome measure will be reduction of regular antipsychotic medication without use of substitute psychotropic medications. Secondary outcome measures will be NPI total and domain scores, Cohen-Mansfield Agitation Inventory scores and adverse events, including falls and hospitalizations. CONCLUSION While previous studies have described strategies to minimize inappropriate use of antipsychotic medications in people with dementia living in long-term care, sustainability and a culture of prescribing for BPSD in aged care remain challenges. The HALT project aims to evaluate the feasibility of a multi-disciplinary approach for deprescribing antipsychotics in this population.

Implementation of an evidence-based intervention to improve the wellbeing of people with dementia and their carers: study protocol for 'Care of People with dementia in their Environments (COPE)' in the Australian context.

BackgroundThere are effective non-pharmacological treatment programs that reduce functional disability and changed behaviours in people with dementia. However, these programs (such as the Care of People with dementia in their Environments (COPE) program) are not widely available. The primary aim of this study is to determine the strategies and processes that enable the COPE program to be implemented into existing dementia care services in Australia.MethodsThis study uses a mixed methods approach to test an implementation strategy. The COPE intervention (up to ten consultations with an occupational therapist and up to two consultations with a nurse) will be implemented using a number of strategies including planning (such as developing and building relationships with dementia care community service providers), educating (training nurses and occupational therapists in how to apply the intervention), restructuring (organisations establishing referral systems; therapist commitment to provide COPE to five clients following training) and quality management (coaching, support, reminders and fidelity checks). Qualitative and quantitative data will contribute to understanding how COPE is adopted and implemented. Feasibility, fidelity, acceptability, uptake and service delivery contexts will be explored and a cost/benefit evaluation conducted. Client outcomes of activity engagement and caregiver wellbeing will be assessed in a pragmatic pre-post evaluation.DiscussionWhile interventions that promote independence and wellbeing are effective and highly valued by people with dementia and their carers, access to such programs is limited. Barriers to translation that have been previously identified are addressed in this study, including limited training opportunities and a lack of confidence in clinicians working with complex symptoms of dementia. A strength of the study is that it involves implementation within different types of existing services, such as government and private providers, so the study will provide useful guidance for further future rollout.Trial registration16 February 2017; ACTRN12617000238370.

Interventions to improve the oral health of people with dementia or cognitive impairment: A review of the literature

ObjectiveOral diseases and conditions are prevalent among older people with dementia and cognitive impairment. While many interventions have been advocated for use in this population, evidence for their effectiveness is unclear. Our objective was to review systematically the content and effectiveness of interventions and implementation strategies used to improve or maintain the oral health of people with dementia or cognitive impairment.MethodsOriginal studies published in English at any time until January 2015 were identified through electronic searches of the Medline, Embase, CINAHL, Scopus and Cochrane databases and hand searches of eligible studies and relevant reviews. Two investigators independently abstracted study characteristics and assessed the methodological quality of eligible studies. Results were presented as a narrative review because significant heterogeneity among included studies precluded a meta-analysis.ResultsThe 18 included studies varied considerably in terms of size, scope and focus. Only two studies were identified that had been designed specifically for and examined exclusively in people with dementia or cognitive impairment. All studies were in residential care; none was population-based. While several studies reported positive effects, a number of methodological weaknesses were identified and the overall quality of included studies was poor. The specific outcomes targeted varied across studies but most studies focused almost exclusively on proximal clinical oral health outcomes such as levels of dental or denture plaque. Attempts to measure intervention integrity were limited and there was usually little or no effort to evaluate intervention effects over a sustained period.ConclusionThere is a lack of high quality evidence to support the effectiveness of oral health interventions and implementation strategies for older people with dementia or cognitive impairment. More rigorous, large scale research is needed in this area. Recommendations are provided to improve the overall quality of evaluation in this area. Emphasis must be placed on developing evidence-based, achievable and sustainable oral health strategies if the needs of people with dementia and cognitive impairment are to be met into the future.

Critical Contextual Elements in Facilitating and Achieving Success with a Person-Centred Care Intervention to Support Antipsychotic Deprescribing for Older People in Long-Term Care

Antipsychotic and other tranquilising medicines are prescribed to help care staff manages behaviour in one-quarter of older people living in Australian long-term care homes. While these medicines pose significant health risks, particularly for people with dementia, reliance on their use occurs when staff are not educated to respond to resident behaviour using nonpharmacological approaches. The Halting Antipsychotic use in Long-Term care (HALT) single-arm study was undertaken to address this issue with 139 people 60 years and over with behaviours of concern for staff living in 24 care homes. A train-the-trainer approach delivered person-centred care education and support for 22 HALT (nurse) champions and 135 direct care staff, dementia management education for visiting general practitioners (GP) and pharmacists, use of an individualised deprescribing protocol for residents, and awareness-raising for the residents family. The HALT champions completed open-ended questionnaires and semistructured interviews to identify the contextual elements they considered most critical to facilitating, educating care staff, and achieving success with the study intervention. They reported that person-centred approaches helped care staff to respond proactively to resident behaviours in the absence of antipsychotic medicines; the champions considered that this required strong managerial support, champion empowerment to lead change, reeducation of care staff, and the cooperation of families and GPs.

A systematic review of interventions to support the careers of women in academic medicine and other disciplines

Objective To summarise quantitative evaluations of interventions designed to support the careers of women in academia of any discipline. Method A systematic search of English entries in PubMed, CINAHL and Google Scholar was conducted in September 2017. Methodological quality of the studies was independently assessed by two authors using the Joanna Briggs Institute quality appraisal checklists. Meta-analysis was not possible due to heterogeneity in methods and outcomes; results were synthesised and displayed narratively. Results Eighteen eligible studies were identified, mostly evaluating programmes in academic medicine departments. The most common interventions were mentoring, education, professional development and/or networking programmes. All programmes took a ‘bottom-up’ approach in that women were responsible for opting into and devoting time to participation. Study quality was low overall, but all studies reported positive outcomes on at least one indicator. Most often this included improvements in self-rated skills and capabilities, or satisfaction with the programme offered. Results regarding tangible outcomes were mixed; while some studies noted improvements in promotion, retention and remuneration, others did not. Conclusions This review suggests that targeted programmes have the potential to improve some outcomes for women in academia. However, the studies provide limited high-quality evidence to provide information for academic institutions in terms of the best way to improve outcomes for women in academia. The success of an intervention appears to be undermined when it relies on the additional labour of those it is intending to support (ie, ‘bottom-up’ approaches). As such, academic institutions should consider and evaluate the efficacy of ‘top-down’ interventions that start with change in practice of higher management.

WHY AREN'T PEOPLE WITH YOUNG ONSET DEMENTIA AND THEIR CARERS USING FORMAL SERVICES?

givers would report a high level of caregiver burden. The model explained 50% of the variance in the high Zarit scores and correctly classified 83% of cases. In particular, caregivers for individuals with YOD were almost 3 times more likely to experience high levels of caregiver burden. Conclusions: Intervention programs with strategies that provide comprehensive support for caregivers of YOD should be a priority in the holistic management of dementia.