Health and social care needs of people living with dementia: a qualitative study of dementia support in the Victorian region of Gippsland, Australia.

INTRODUCTION: There is a lack of information about the experiences of people living with dementia and their carers, especially in rural and regional areas. Understanding these experiences helps to identify gaps and unmet needs within the health system and improve quality of care and outcomes for people living with dementia. The aim of this study was to improve our knowledge of dementia support needs. This included access to health and social care services and supports for people living with dementia and those who provide informal or formal support to someone living with dementia. METHODS: Interviews were conducted with 26 participants from the Gippsland region of Victoria, Australia with knowledge of dementia care. Purposive sampling engaged people with lived experience, carers/family members and health professionals delivering dementia care and social services. Discussions centred around participants' experiences of support services, the diagnosis process and what they thought was needed to improve the services and supports offered. Thematic analysis of the data was undertaken using the framework method. RESULTS: The interview data indicated that the needs of many people living with dementia and their carers were not currently being met. The themes were limited access to services and supports, including primary and specialist care, often impacted by lack of knowledge of care options, difficulty navigating the system and funding models as a barrier, leading to delays in getting a diagnosis and accessing specialist services; lack of holistic care to enable people living with dementia to 'live well'; and stigma impacted by a lack of knowledge of dementia among professionals and in the community. Relationship-centred care was described as a way to improve the lives of people living with dementia. CONCLUSION: Key areas for improvement include increasing community awareness of dementia and available local services, more support to obtain an early dementia diagnosis, increased help to navigate the system, especially immediately after diagnosis, and easier access to appropriate home support services when they are needed. Other recommendations include person-centred care across settings - supported by funding models, more education and communication skills training for health professionals and care staff - and greater support for and increased recognition of carers.

The provision of dementia care in general practice: practice nurse perceptions of their role.

BACKGROUND: Primary care nurses can assist General Practitioner's to identify cognition concerns and support patient health self-management for those experiencing cognitive impairment or dementia. This support may lead to more appropriate care and better health outcomes for this group. Consequently, there is a need to identify the role of the primary care nurse in dementia care provision, nurse perceptions of this role and to also understand the barriers and enablers that may influence any current or potential primary care nurse role in dementia care provision. METHODS: Eight focus groups were conducted with a total of 36 primary care nurses. Data was transcribed verbatim and thematically analysed. RESULTS: There was a high level of agreement between primary care nurses that they had a role in provision of dementia care. This role was largely attributed to the strong therapeutic relationship between nurses and patients. However, dementia care provision was not without its challenges, including a perceived lack of knowledge, limited resources and the hierarchical nature of general practice. Three main themes were identified: personal attributes of the primary care nurse; professional attributes of the primary care nurse role and the context of practice. Six sub-themes were identified: knowing the person; overcoming stigma; providing holistic care; knowing what to do; team culture and working in the system. CONCLUSIONS: The findings of this study suggest primary care nurses have a role in dementia care provision and, there is a need to provide support for the nurse to deliver person-centred health care in the context of cognitive impairment. As the demand for good quality primary care for people living with dementia increases, the role of the primary care nurse should be considered in primary care policy discussions. The knowledge gained from this study could be useful in informing dementia training content, to provide better prompts in the health assessment and care planning templates used by primary care nurses to better identify the care needs of people with a cognitive impairment and to develop dementia care guidelines for primary care nurses.

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. TRIAL REGISTRATION NUMBER: Australian and New Zealand Clinical Trials Registry: ACTRN12616000927426p.

What is the effectiveness of the support worker role for people with dementia and their carers? A systematic review.

BACKGROUND: Dementia is progressive in nature and the associated functional decline inevitably leads to increasing dependence on others in areas of daily living. Models of support have been developed and implemented to assist with adjusting to living with memory loss and functional decline; to navigate the health and aged care system; and to access services. We undertook a systematic review of international literature on key worker type support roles to identify essential components and ascertain how the role can be best utilised to assist community-dwelling people with dementia and their carers. This review of support roles is the first to our knowledge to include both quantitative and qualitative studies and all models of support. METHOD: A systematic review of studies written in English and published between January 2003 and December 2014. Data sources were Medline, PsychInfo and CINAHL, internet, expert consultation and reference lists of included studies. After screening articles to ensure that they reported on a key worker type support role, involved carers and or people with dementia living at home and removing duplicates, eligible papers were appraised and evaluated. RESULTS: Thirty six studies were eligible for inclusion in the review. Eligible studies were divided into type of support roles and study type. The heterogeneity of included studies and high risk of bias made a meta-analysis inappropriate and it was therefore difficult to draw overall conclusions. However, essential components shared across support worker models that demonstrated a positive impact on carer burden and improved quality of life included: long term intervention, face to face contact, individualised education and support based on needs, multi-disciplinary teams, collaborative input, health/clinical background of support workers, ongoing follow up and inter professional and inter-sectoral collaborations. There was a lack of studies assessing cost-effectiveness. CONCLUSIONS: Studies that include a high quality evaluation of holistic, tailored models of support that identify which components of support produce the most valuable outcomes to assist people with dementia and their carers and families to continue to live meaningful lives are needed. There is also a need for a cost effectiveness evaluation of support worker roles. TRIAL REGISTRATION: PROSPERO international prospective register of systematic reviews: PROSPERO 2014 CRD42014013992 .