Positive behaviour support for people with dementia

Aim: Behavioural changes following dementia can have detrimental effects on the quality of life of the individual and family members. In the current service context there is an increasing emphasis on the use of non-pharmacological interventions that aim to both ameliorate behaviour problems and improve quality of life. One relevant clinical framework is Positive Behaviour Support (PBS). This paper introduces the framework, its operationalisation, and some unresolved issues. Methods: Relevant literature and professional experience informs the theoretical and clinical justification for the use of PBS in dementia services, and a case study demonstrates application of the framework. Results: PBS can be effectively implemented in dementia contexts, but there are significant issues to be resolved regarding resourcing and appropriate goal setting. Conclusions: Further research is necessary to address skill development among clinicians, a supportive service, and limitations of this framework in the context of a progressive disease process.

Boundary-crossers: How providers facilitate ethnic minority families’ access to dementia services

Background Providers who work closely with ethnic minority people with dementia and their families are pivotal in helping them access services. However, few studies have examined how these providers actually do this work. Using the concept of ‘boundary crossers,’ this article investigates the strategies applied by these providers to facilitate access to dementia services for ethnic minority people with dementia and their families. Methods Between 2017 and 2020, in-depth video-recorded interviews were conducted with 27 health, aged care, and community service providers working with ethnic minority people living with dementia across Australia. Interviews were conducted in language and in English, then translated and transcribed verbatim. The data were analyzed thematically. Results Family and community stigma associated with dementia and extra-familial care were significant barriers to families engaging with services. To overcome these barriers, participants worked at the boundaries of culture and dementia, community and systems, strategically using English and other vernaculars, clinical and cultural terminology, building trust and rapport, and assisting with service navigation to improve access. Concurrently, they were cognizant of familial boundaries and were careful to provide services that were culturally appropriate without supplanting the families’ role. Conclusions In negotiating cultural, social, and professional boundaries, providers undertake multidimensional and complex work that involves education, advocacy, negotiation, navigation, creativity, and emotional engagement. This work is largely under-valued but offers a model of care that facilitates social and community development as well as service integration across health, aged care, and social services.

Pursuing pathways to care: dementia and aging in Indigenous communities

This chapter talks about pursuing pathways to care, which is critical in the movement towards addressing the health status and its relationship to dementia amongst Indigenous older adults in their communities. It refers to the proportion of Indigenous older adults who are above 65 years of age that continues to rise despite the numbers being lower than their non-Indigenous counterparts. It also mentions dementia, which can represent a concern for families and prevent individuals from aging in place, and causes distress to individuals and their caregivers. The chapter points out the lack of access to dementia services and specialists in rural communities that exacerbates families' ability to care for their loved ones at home. It presents an examination of dementia among Indigenous peoples, including dementia care and rural access to care.

A description of the components of a specialist younger-onset dementia service: a potential model for a dementia-specific service for younger people

Objectives: This narrative paper describes the influences behind the development of, and key components of a specialist younger-onset dementia service located in metropolitan Victoria, Australia. Conclusion: The Melbourne Young-Onset Dementia Service was established in 2013 and provides diagnosis and ongoing care for people with younger-onset dementia and their families, through collaboration with other medical units, allied health and community services. It is potentially a model for other younger-onset dementia services nationally and internationally.

Dementia Care under COVID-19 and Infectious Disease Pandemic Restrictions

Emergency measures including social distancing and program restrictions during COVID-19 has reduced supports for people living with dementia and family/friend caregivers in the community. Consequently, these reductions in dementia services and resources have added to existing challenges and (in)equities for this stigmatized population. The objectives of this study were to identify how community-based resources and services for people with dementia and their caregivers are impacted by public health emergency measures enacted during COVID-19 and other infectious pandemics and secondly, use an intersectional health equity perspective to explore how supports for people and families living with dementia are affected by social determinants of health. A scoping review using JBI methodology was conducted. Academic databases searched included Embase, Medline, CINAHL and PAIS. Grey literature was searched using the CADTH tool. English articles published after 2000 in high-income countries were included. Data was extracted by two reviewers using an adaptation of the Health Equity Impact Assessment tool to explore factors related to health equity. Findings included articles discussing the COVID-19 pandemic (N=15). Most alterations to dementia services included switching to telehealth platforms with some advantages/disadvantages of this method discussed. Limited information on how different populations experienced service changes was identified and more research is needed to address issues of (in)equities for people living with dementia and their caregivers during public health emergencies. Information on how health emergency responses affects dementia services and their users will provide important information on resources for current and future efforts to analyze and assess their impacts.

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.

“It is always me against the Norwegian system.” barriers and facilitators in accessing and using dementia care by minority ethnic groups in Norway: a qualitative study

Background Dementia is one of the greatest health challenges in the contemporary world. Due to several barriers to accessing health care services, elderly immigrants constitute a group that poses special challenges in dementia diagnosis and treatment. The aim of this study was to explore the barriers and facilitators in accessing and using dementia care services by minority ethnic groups in Norway. Methods The study utilised a qualitative design. The participants included family caregivers of individuals from minority ethnic groups living with dementia, representatives of immigrant communities, and representatives of health and care personnel working with people living with dementia. Individual semi-structured in-depth interviews were carried out in 2018 and 2019 in Oslo and Akershus. Interviews were analysed using thematic analyses. Results Several barriers and facilitators in accessing and using dementia care services were identified, the most important of which were related to lack of knowledge of dementia, lack of awareness of dementia care services, lack of language skills, culturally based differences, the organisation of Norwegian dementia care services, and immigrants’ socio-economic status. According to the study participants, having health care personnel in the family and further adaptation of dementia services to the needs of people with different cultural and linguistic backgrounds facilitate access to dementia services. Conclusions The study shows the need to develop inclusive policies that promote a patient-centred approach to ensure that individuals from minority ethnic groups receive appropriate dementia care.