Evaluating the Efficacy of the “Support for Life” Program for People with Dementia and Their Families and Carers’ to Enable Them to Live Well: A Protocol for a Cluster Stepped Wedge Randomized Controlled Trial

Introduction Assistance provided to support people living with dementia and carers is highly valued by them. However, current support systems in Australia are disjointed, inaccessible to all, poorly coordinated, and focus on dysfunction rather than ability. Support workers for people with dementia are in short supply, and there is little consistency in their roles. To address this large service gap and unmet need, we have developed an evidence-based optimized model of holistic support for people with dementia and their carers and families. This article describes the “Support for Life” model intervention. Methods A stepped wedge cluster randomized controlled trial will be conducted over 3 years across three Australian states. One hundred participants with dementia and/or their carers/family members will be randomly selected from community health center client lists in each state to receive either the dementia “Support for Life” intervention (Group A) or routine care (Group B). Group A participants will have access to the intervention from year 1. Group B participants will continue to receive usual care and will not be denied information on dementia or dementia services in year 1. In year 2, Group B participants will have access to the intervention. A highly trained expert dementia support worker will provide the “Support for Life” intervention, which is a flexible, individually tailored, holistic support that is relationship-centered, focused on enablement as opposed to dysfunction, and facilitate participants’ continued engagement in their community and the workforce. Additionally, dementia education, information resources, advocacy, and practical support to navigate and access dementia services and health care will be provided. The mode of support will include face to face, telephone, and internet interaction on an “as needed basis” for 12 months. The primary hypothesis is that the intervention will improve the quality of life of people with dementia and the health and well-being of carers/family through facilitating the continuation and enhancement of regular daily activities. Secondary hypotheses will examine other health and service usage outcomes. The outputs will also include a health economic analysis to investigate the costs (and savings) of any associated reduction in unnecessary health services use and delay in accessing permanent residential aged care

Optimising health literacy and access of service provision to community dwelling older people with diabetes receiving home nursing support

Background. Health literacy is the ability to access, understand, and use information and services for good health. Among people with chronic conditions, health literacy requirements for effective self-management are high. The Optimising Health Literacy and Access (Ophelia) study engaged diverse organisations in the codesign of interventions involving the Health Literacy Questionnaire (HLQ) needs assessment, followed by development and evaluation of interventions addressing identified needs. This study reports the process and outcomes of one of the nine organisations, the Royal District Nursing Service (RDNS). Methods. Participants were home nursing clients with diabetes. The intervention included tailored diabetes self-management education according to preferred learning style, a standardised diabetes education tool, resources, and teach-back method. Results. Needs analysis of 113 quota-sampled clients showed difficulties managing health and finding and appraising health information. The service-wide diabetes education intervention was applied to 24 clients. The intervention was well received by clients and nurses. Positive impacts on clients\u27 diabetes knowledge and behaviour were seen and nurses reported clear benefits to their practice. Conclusion. A structured method that supports healthcare services to codesign interventions that respond to the health literacy needs of their clients can lead to evidence-informed, sustainable practice changes that support clients to better understand effective diabetes self-management

Development of an optimised key worker framework for people with dementia, their family and caring unit living in the community

Abstract Background In Australia, dementia is a national health priority. With the rising number of people living with dementia and shortage of formal and informal carers predicted in the near future, developing approaches to coordinating services in quality-focused ways is considered an urgent priority. Key worker support models are one approach that have been used to assist people living with dementia and their caring unit coordinate services and navigate service systems; however, there is limited literature outlining comprehensive frameworks for the implementation of community dementia key worker roles in practice. In this paper an optimised key worker framework for people with dementia, their family and caring unit living in the community is developed and presented. Methods A number of processes were undertaken to inform the development of a co-designed optimised key worker framework: an expert working and reference group; a systematic review of the literature; and a qualitative evaluation of 14 dementia key worker models operating in Australia involving 14 interviews with organisation managers, 19 with key workers and 15 with people living with dementia and/or their caring unit. Data from the systematic review and evaluation of dementia key worker models were analysed by the researchers and the expert working and reference group using a constant comparative approach to define the essential components of the optimised framework. Results The developed framework consisted of four main components: overarching philosophies; organisational context; role definition; and key worker competencies. A number of more clearly defined sub-themes sat under each component. Reflected in the framework is the complexity of the dementia journey and the difficulty in trying to develop a ‘one size fits all’ approach. Conclusions This co-designed study led to the development of an evidence based framework which outlines a comprehensive synthesis of components viewed as being essential to the implementation of a dementia key worker model of care in the community. The framework was informed and endorsed by people living with dementia and their caring unit, key workers, managers, Australian industry experts, policy makers and researchers. An evaluation of its effectiveness and relevance for practice within the dementia care space is required

The role of home nursing visits in supporting people living with dementia in Japan and Australia: Cross-national learnings and future system reform

Japan and Australia are two western Pacific countries with divergent cultures and histories but they share a common public health concern of providing services for their increasing number of people living with dementia. Age is the greatest risk factor for developing dementia, and Japan is leading the world in aging populations. In 2016 in Japan 27.2% of the total population were over 65, while in Australia 15% were over 65. Both countries have responded to social preferences for community aged care. As a result, in Japan the Visiting Nurse Service Stations (VNSS) and in Australia community aged care service providers such as the Royal District Nursing Service (RDNS) are increasingly addressing the needs of people with dementia and their families. This article presents three sets of data to compare developments in the two health systems and to describe the scope of nursing services for people with dementia in the community. For Japan we analyzed an annual survey of VNSS activities, checked the number of people with a primary diagnosis of dementia, and collected data on presenting conditions on 2012. For Australia we analyzed a sample of two Home and Community Care cohorts of RDNS clients. Results indicated that both generalist service systems include tailored person-centered care for people with dementia. The Japanese system has introduced Dementia Support Doctors while in Australia access to psychogeriatric care is still sparse. As the Asia Pacific region experiences aging populations, community services for people with dementia can use these two systems as models

Clinical practice guidelines and principles of care for people with dementia: a protocol for undertaking a Delphi technique to identify the recommendations relevant to primary care nurses in the delivery of person-centred dementia care

Introduction Nationally and internationally it is well recognised that dementia is poorly recognised and suboptimally managed in the primary care setting. There are multiple and complex reasons for this gap in care, including a lack of knowledge, high care demands and inadequate time for the general practitioner alone to manage dementia with its multiple physical, psychological and social dimensions. The primary care nurse potentially has a role in assisting the general practitioner in the provision of evidence-based dementia care. Although dementia-care guidelines for general practitioners exist, evidence on resources to support the primary care nurse in dementia care provision is scarce. The ‘Australian Clinical Practice Guidelines and Principles of Care for People with Dementia’ provides 109 recommendations for the diagnosis and management of dementia. This protocol describes a Delphi study to identify which of the 109 recommendations contained in these multidisciplinary guidelines are relevant to the primary care nurse in the delivery of person-centred dementia care in the general practice setting.Methods and analysis Using a Delphi consensus online survey, an expert panel will grade each of the recommendations written in the ‘Clinical Practice Guidelines and Principles of Care for People with Dementia’ as high-to-low relevance with respect to the role of the primary care nurse in general practice. To optimise reliability of results, quality indicators will be used in the data collection and reporting of the study. Invited panel members will include Australian primary care nurses working in general practice, primary care nursing researchers and representatives of the Australian Primary Health Care Nurses Association, the peak professional body for nurses working in primary healthcare.Ethics and dissemination This study has been approved by The University of Newcastle Human Research Ethics Committee (HREC) (H-2019-0029).Findings will be published in a peer-reviewed journal and presented at scientific conferences

Additional file 1: of Development of an optimised key worker framework for people with dementia, their family and caring unit living in the community

The interview topic guides used for each group of participants that took part in the evaluation of Australian Key Worker Models (organisation managers; key workers; people living with dementia; caring unit/families) are in included as a supplementary file. (DOCX 15 kb

Evaluating the efficacy of the ‘Support for Life’ program for people with dementia and their families and carers’ to enable them to live well: A protocol for a cluster stepped wedge randomized controlled trial

Assistance provided to support people living with dementia and carers is highly valued by them. However current support systems in Australia are disjointed, inaccessible to all, poorly co-ordinated and focus on dysfunction rather than ability. Support workers are in short supply and there is little consistency in their roles. To address this large service gap and unmet need we have developed an evidence-based optimised model of holistic support for people with dementia and their carers and families. This article describes the ‘Support for Life’ model intervention. A stepped wedge cluster randomized controlled trial (SWCRCT) will be conducted over three years across three Australian states. One hundred participants with dementia and/or their carers/family members will be randomly selected from community health centre client lists in each state to receive either the dementia ‘Support for Life’ intervention (Group A) or routine care (Group B). Group A participants will have access to the intervention from year one. Group B participants will continue to receive usual care and will not be denied information on dementia or dementia services in year one. In year two Group B participants will have access to the intervention. A highly trained expert dementia support worker will provide the ‘Support for Life’ intervention, which is a flexible, individually tailored, holistic support that is relationship-centred, focused on enablement as opposed to dysfunction and facilitate participants continued engagement in their community and the workforce. Additionally, dementia education, information resources, advocacy and practical support to navigate and access dementia services and healthcare will be provided. The mode of support will include face to face, telephone and internet, interaction on an ‘as needed basis’ for 12 months. The primary hypothesis is that the intervention will improve the quality of life of people with dementia and the health and wellbeing of carers/family through facilitating the continuation and enhancement of regular daily activities. Secondary hypotheses will examine other health and service usage outcomes. The outputs will also include a health economic analysis to investigate the costs (and savings) of any associated reduction in unnecessary health services use and delay in accessing permanent residential aged care

Development of a discussion tool to enable well-being by providing choices for people with dementia: a qualitative study incorporating codesign and participatory action research

Objective: To codesign a discussion tool to facilitate negotiation of risk between health professionals, people with dementia and carers. Methods: A qualitative approach using codesign. Thematic analysis was used to analyse interviews and focus groups with people with dementia, carers, healthcare staff and healthy older people exploring the issue of risk in dementia, the acceptability and development of a discussion tool. Results: Sixty-one participants identified the breadth, depth and complexity of risk in dementia care and the need for individualised solutions. They also deemed a discussion tool to facilitate negotiation of risk was acceptable and responses informed the tool development. Twenty-two participants provided feedback that was used to refine the final version. Conclusion: Our discussion tool enables choices for people with dementia by focusing on abilities rather than deficits and assists health professionals to deliver person-centred care. Flash cards prompt concerns and the tool provides a range of strategies to address these issues