What constitutes 'good' home care for people with dementia? An investigation of the views of home care service recipients and providers

BACKGROUND: Our objective was to explore what people receiving and providing care consider to be ‘good’ in-home care for people living with dementia. METHODS: We conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke’s six-step approach. RESULTS: Consensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers’ understanding of dementia and its impact; 2) Home care workers’ demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers’ knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers. CONCLUSIONS: It is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services. TRIAL REGISTRATION: ACTRN 12619000251123

What constitutes ‘good’ home care for people with dementia? An investigation of the views of home care service recipients and providers

BACKGROUND: Our objective was to explore what people receiving and providing care consider to be 'good' in-home care for people living with dementia. METHODS: We conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke's six-step approach. RESULTS: Consensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers' understanding of dementia and its impact; 2) Home care workers' demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers' knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers. CONCLUSIONS: It is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services. TRIAL REGISTRATION: ACTRN 12619000251123

Development of an evidence-based framework to support knowledge translation within the Australian Dementia Training and Study Program

Abstract presented at the National Dementia Research Forum 2014, 19 September 2014, Sydney, Australi

Stakeholder perceptions on resident-to-resident aggression: implications for prevention

Objective Resident-to-resident aggression (RRA) in nursing homes is a matter of serious and profound concern, yet action to eliminate or mitigate RRA is hampered by a paucity of research. The aim of this study was to explore key stakeholders' knowledge and perceptions of RRA in Australian nursing homes.Methods A qualitative cross-sectional study design was used, and semistructured telephone interviews were conducted. Participants were purposively and conveniently sampled with replacement from a range of aged care, healthcare and legal professional bodies, as well as advocacy organisations. The interview contained 12 closed-ended questions and six open-ended questions about participants' knowledge, experiences, perceptions and attitudes to RRA. Participant characteristics and responses to closed-ended questions were aggregated and proportions calculated, and thematic analysis was conducted by two independent researchers using a directed content approach.Results Fifteen participants (11 females; 73.3%) in senior management positions were interviewed. All were familiar with the concept of RRA and just over half (n = 8; 53.3%) had witnessed an incident. Major themes included the nature and causes of RRA and attitudes and responses to RRA. Potential causes of RRA included maladaptation to nursing home life, transfer of pre-existing issues into the nursing home environment, physical environment and staffing-related issues. RRA was commonly viewed by participants as dangerous and unpredictable or, conversely, as expected behaviour in a nursing home setting. A person-centred care approach was considered most effective for managing and responding to RRA.Conclusion The research demonstrates that understanding perceptions of RRA among key stakeholders is critical to identifying the nature and scope of the problem and to developing and implementing appropriate prevention strategies.What is known about the topic? RRA is common in nursing homes, with potentially fatal consequences for residents involved, and has serious implications for nursing home staff, managers, providers, and regulators. Despite this, the prevalence, impact, and prevention of RRA remains under-recognised and under-researched in Australia.What does this paper add? This is the first Australian study to produce qualitative findings on the knowledge and perceptions of RRA in nursing homes among key stakeholders. This paper reports on the knowledge and perceptions of individuals in senior management and policy roles in aged care and related fields in relation to four themes: nature; causes; attitudes; and responses to RRA. Our findings highlight the complex and multifactorial nature of RRA.What are the implications for practitioners? A movement towards person-centred care that promotes understanding of individual care needs is favoured as an approach to reducing RRA. Increased reporting of both minor and major incidents of RRA will help to identify patterns and inform appropriate responses. However, a cultural shift is first required to recognise RRA as a manageable and preventable health care and adult safeguarding issue

Chronic disease self-management support for persons with dementia, in a clinical setting

Joseph Elias Ibrahim,1 Laura J Anderson,1 Aleece MacPhail,2 Janaka Jonathan Lovell,2 Marie-Claire Davis,1 Margaret Winbolt3 1Department of Forensic Medicine, Monash University, Southbank, 2Ballarat Health Services, Ballarat, 3Australian Centre for Evidence Based Aged Care, College of Science, Health and Engineering, La Trobe University, Melbourne, VIC, Australia Abstract: The burden of chronic disease is greater in individuals with dementia, a patient group that is growing as the population is aging. The cornerstone of optimal management of chronic disease requires effective patient self-management. However, this is particularly challenging in older persons with a comorbid diagnosis of dementia. The impact of dementia on a person’s ability to self-manage his/her chronic disease (eg, diabetes mellitus or heart failure) varies according to the cognitive domain(s) affected, severity of impairment and complexity of self-care tasks. A framework is presented that describes how impairment in cognitive domains (attention and information processing, language, visuospatial ability and praxis, learning and memory and executive function) impacts on the five key processes of chronic disease self-management. Recognizing the presence of dementia in a patient with chronic disease may lead to better outcomes. Patients with dementia require individually tailored strategies that accommodate and adjust to the individual and the cognitive domains that are impaired, to optimize their capacity for self-management. Management strategies for clinicians to counter poor self-management due to differentially impaired cognitive domains are also detailed in the presented framework. Clinicians should work in collaboration with patients and care givers to assess a patient’s current capabilities, identify potential barriers to successful self-management and make efforts to adjust the provision of information according to the patient’s skill set. The increasing prevalence of age-related chronic illness along with a decline in the availability of informal caregivers calls for innovative programs to support self-management at a primary care level. Keywords: chronic disease, dementia, self-management, cognitive domain

GP awareness, practice, knowledge and confidence: evaluation of the first nation-wide dementia-focused continuing medical education program in Australia

BACKGROUND: Dementia is under-diagnosed in primary care. Timely diagnosis and care management improve outcomes for patients and caregivers. This research evaluated the effectiveness of a nationwide Continuing Medical Education (CME) program to enhance dementia-related awareness, practice, knowledge and confidence of general practitioners (GPs) in Australia. METHODS: Data were collected from self-report surveys by GPs who participated in an accredited CME program face-to-face or online; program evaluations from GPs; and process evaluations from workshop facilitators. CME participants completed surveys at one or more time-points (pre-, post-program, six to 9 months follow-up) between 2015 and 2017. Paired samples t-test was used to determine difference in mean outcome scores (self-reported change in awareness, knowledge, confidence, practice) between time-points. Multivariable regression analyses were used to investigate associations between respondent characteristics and key variables. Qualitative feedback was analysed thematically. RESULTS: Of 1352 GPs who completed a survey at one or more time-points (pre: 1303; post: 1017; follow-up: 138), mean scores increased between pre-CME and post-program for awareness (Mpost-pre = 0.9, p \u3c  0.0005), practice-related items (Mpost-pre = 1.3, p \u3c  0.0005), knowledge (Mpost-pre = 2.2, p \u3c  0.0005), confidence (Mpost-pre = 2.1, p \u3c  0.0005). Significant increases were seen in all four outcomes for GPs who completed these surveys at both pre- and follow-up time-points. Male participants and those who had practised for five or more years showed greater change in knowledge and confidence. Age, years in practice, and education delivery method significantly predicted post-program knowledge and confidence. Most respondents who completed additional program evaluations (\u3e 90%) rated the training as relevant to their practice. These participants, and facilitators who completed process evaluations, suggested adding more content addressing patient capacity and legal issues, locality-specific specialist and support services, case studies and videos to illustrate concepts. CONCLUSIONS: The sustainability of change in key elements relating to health professionals\u27 dementia awareness, knowledge and confidence indicated that dementia CME programs may contribute to improving capacity to provide timely dementia diagnosis and management in general practice. Low follow-up response rates warrant cautious interpretation of results. Dementia CME should be adopted in other contexts and updated as more research becomes available

System complexities affecting recovery after a minor transport-related injury:The need for a person-centred approach

Objective: To understand clients’ experiences of the recovery journey through the compensation system and to identify areas and strategies for quality improvement. Methods: A qualitative study of 23 participants with physical or mental disabilities caused by traffic accidents, which occurred, on average, 4 years ago. Purposive sampling of long-term recovery clients who made a compensation claim after their injuries was applied until data saturation was reached. Data were collected using semi-structured interviews and analysed through conventional thematic analysis. Results: This study demonstrated that recovery is a complex phenomenon that can be impacted by numerous challenges of navigating the compensation system and using its services. Clients perceived the compensation provider as limited in rules around which services they could access. A common perception amongst clients was that the compensation provider did not have the capacity and knowledge to understand health and recovery processes nor did it provide adequate guidelines or instructions that would assist clients with their recovery. Many clients dealt with numerous case managers and felt insufficiently informed on what to expect and do, which led to a lack of trust in rehabilitation management and case managers’ decisions. According to clients, financial impacts were neglected and not addressed effectively. Many clients felt abandoned by the system which led to perceived feelings of desertion and negligence. Conclusion: Understanding modifiable barriers to recovery in compensation systems presents opportunities to amend current practices and consider a holistic, person-centred care approach. It is apparent that improved recovery management, communication and adequate provision of guidelines are needed to meet clients’ needs and facilitate better outcomes. A person-centred care approach is likely to improve quality of life and help clients navigate the compensation system more effectively with assistance from health and compensation professionals, who should be actively involved in their recovery processes

GP awareness, practice, knowledge and confidence: Evaluation of the first nation-wide dementia-focused continuing medical education program in Australia

Background: Dementia is under-diagnosed in primary care. Timely diagnosis and care management improve outcomes for patients and caregivers. This research evaluated the effectiveness of a nationwide Continuing Medical Education (CME) program to enhance dementia-related awareness, practice, knowledge and confidence of general practitioners (GPs) in Australia. Methods: Data were collected from self-report surveys by GPs who participated in an accredited CME program face-to-face or online; program evaluations from GPs; and process evaluations from workshop facilitators. CME participants completed surveys at one or more time-points (pre-, post-program, six to 9 months follow-up) between 2015 and 2017. Paired samples t-test was used to determine difference in mean outcome scores (self-reported change in awareness, knowledge, confidence, practice) between time-points. Multivariable regression analyses were used to investigate associations between respondent characteristics and key variables. Qualitative feedback was analysed thematically. Results: Of 1352 GPs who completed a survey at one or more time-points (pre: 1303; post: 1017; follow-up: 138), mean scores increased between pre-CME and post-program for awareness (M post-pre = 0.9, p 90%) rated the training as relevant to their practice. These participants, and facilitators who completed process evaluations, suggested adding more content addressing patient capacity and legal issues, locality-specific specialist and support services, case studies and videos to illustrate concepts. Conclusions: The sustainability of change in key elements relating to health professionals' dementia awareness, knowledge and confidence indicated that dementia CME programs may contribute to improving capacity to provide timely dementia diagnosis and management in general practice. Low follow-up response rates warrant cautious interpretation of results. Dementia CME should be adopted in other contexts and updated as more research becomes available