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Alignment Between Informal Carers and Formal Dementia Care Workers: Perspectives on Community Service Delivery Dr Kate-Ellen J. Elliott 1 2 *, Dr Christine M. Stirling 2, Prof Andrew L. Robinson 2 and A/Prof Jennifer L. Scott 1 2. 1 School of Psychology, Faculty of Health Science, University of Tasmania, Private Bag 30, Hobart, Tasmania, Australia, 7001. 2 Wicking Dementia Research and Education Centre, Faculty of Health Science, University of Tasmania, Private Bag 143, Hobart, Tasmania, Australia, 7001. In this talk I’m going to report some of the findings from my PhD which investigated capacity building and resilience for the community-based dementia care workforce. I’d like to acknowledge the support and advice from my supervisory team - Dr Chris Stirling, Prof Andrew Robinson & A/Prof Jenn Scott, who worked together to help steer the project. Also, thanks go to several community-based organisations who were project partners – their logo’s appear on this slide. So this presentation will focus on a small part of my PhD. In particular, whether there is an alignment Between Informal Carers and Formal Dementia Care Workers – regarding their Perspectives on Community Service Delivery. The findings are from an exploration of informal carers’ of people with dementia (such as family members, friends and support people), as well as paid formal dementia care workers (based in home and community care services provided in the community setting). The perspectives of both types of carers were investigated with a focus on their views of current and future community service delivery. Do not reproduce without author permission © 2013
Dementia is a public health priorityIn 2010, 35.6 million people had dementia worldwide One new case every four seconds & will treble by 2050 In 2011, 298,000 Australians had dementia 62% were women, 74% were aged 75 and over, 70% lived in the community aged 65 +, almost 1 in 10 (9%) had dementia, aged 85 +, 3 in 10 (30%) had dementia. 23,900 Australians under the age of 65 with dementia in 2011 Dementia has been declared an international health priority by two key peak bodies – world health organisation and Alzheimer's disease international. According to a report published by WHO & ADI, in 2010, 35.6 million people had dementia worldwide, which equates to one new case every four seconds. And it was reported that this number will treble by 2050. A recent report by the Australian Institute of Health and Welfare published in 2012, indicated that In 2011, 298,000 Australians had dementia – and of these 62% were women, 74% were aged 75 and over, 70% lived in the community. While, these are some statistics that you are more than likely to be familiar with. One of the key messages I want to highlight from this slide is that we know, in Australia, most people with dementia are living in the community. (Access Economic, 2009; ABS, 2012; AIHW, 2007; Birch & Draper, 2008; Ferri et al, 2005; USAA, 2012; Wimo et al, 2003) Dr K Elliott © 2013
Carers of people with dementiaMost care for people with dementia is provided by family members or informal support systems in the community In Australia, estimates show that it would cost more than $30.5 billion per year to replace all informal dementia carers Enormous public health value of informal care can come at great cost to the carer (e.g., poor mental health) Projected shortage of more than 153,000 paid and unpaid carers for people with dementia by 2029 Internationally, most of the care for people with dementia is provided by family members or informal support systems in the community (Wimo & Prince, 2010), and this is the case, more so for developing countries. In Australia, estimates show that it would cost more than $30.5 billion per year (AE, 2005) to replace all informal dementia carers. So therefore there is an enormous public health value of informal care – but unfortunately this can come at great cost to the carer, as studies document that caring for a person with dementia can have negative effects on caregivers’ mental and physical well-being (Cuijipers; Zarti & Femia, 2008). These reasons alone provide a strong rationale to support carers to access health services that meet their complex and varied needs. In addition, projections show that there is expected to be a shortage of more than 153,000 paid and unpaid carers for people with dementia by 2029. (Access Economics, 2005;2009; Cuijpers, 2005; Wimo & Prince, 2010; Zarit & Femia, 2008) Dr K Elliott © 2013
Carers of people with dementiaImportant source of the evaluation of the health and aged care system Valuable resource for ideas and suggestions on future care packages and services Most research is focused on residential not community care service delivery Even less on whether informal carers and paid formal carers perspectives align Informal carers are considered an important source of the evaluation of the health and aged care system (Lee et al., 2009; Litherland, 2008). Considering the experience and nature of their caring role, informal carers are a valuable resource for ideas and suggestions on future care packages and services for people with dementia. Feedback from caregivers on service delivery can provide ways for health care professionals to seek better quality of care (Lee et al., 2009). While much research has focused on family carers perspectives of residential care (Harmer and Orrell, 2008; Orrell et al., 2008; Train et al., 2005), less is known about informal carers’ thoughts about service delivery in community settings – as well as paid workers views on the needs of their clients. And even less is known about whether informal carers and paid formal carers align in their thoughts on how to provide care and support to people with dementia, both currently and in the future. (Lee et al., 2009; Litherland, 2008) Dr K Elliott © 2013
Aim to assess the alignment of care expectations for informal and formal carers of people with dementia living in the community The aim was to highlight the care expectations of informal and formal community-based dementia carers. Next I will briefly describe the methodology adopted to investigate this aim, and then present the findings. Dr K Elliott © 2013
Methods Qualitative data was collected and analysed independently for community-based; Informal dementia carers Workshop Formal dementia care workers Semi-structured interviews Data transcribed and coded for themes Very good inter-coder reliability Qualitative data was collected and analysed independently for informal dementia carers and formal dementia care workers from the community setting. Data from informal dementia carers was gathered during a workshop discussion and participants completed a handout answering the topic questions addressed in the workshop. Discussion points included; i) present and future needs to be met by support services, ii) satisfaction with services they currently receive, iii) support workers’ attitudes, skills and knowledge, and iv) ways to develop the workforce in the future. Data from formal dementia care workers was gathered from semi-structured interviews that focused on workers thoughts about their jobs, training, and the future of the sector. Data was transcribed and coded for themes. Nvivo software was used to manage the data. A secondary coder was used to check reliability of the themes, and very good inter-coder reliability was found with Kappa ratings above 0.9. Next I will describe the a comparison of the data for the two carer types. This was done, firstly by comparing the demographic characteristics of each carer type. Secondly, themes identified by both groups of carers were reviewed according to several overlapping areas, where the themes from participants’ comments either converged or diverged. Dr K Elliott © 2013
Brief demographics comparedN= 61 (36 Informal carers; 25 formal care workers) In this table you can see that most cares were female and over 50 years of age, despite being a family or professional carer. In the case of the informal carers most were female and cared for their husbands. Similarities were also found between the two carer types regarding their roles. The majority of informal carers had been in their care roles for an average of seven years (SD = 7.8), similarly, the majority of formal paid care workers had been employed on average for six years (SD = 4.3) in the sector. Interestingly, most professional carers were employed on a casual basis (despite working for an average of six years). Overall, some similarities were found regarding the demographic characteristics of informal and formal dementia carers. Follow this comparison, the themes from the qualitative data, identified by both groups of carers were reviewed according to overlapping areas – including 1). practical caring roles, 2). coping with care roles, 3). the care relationship, as well as issues related to the 3). workforce and service delivery. Dr K Elliott © 2013
Similar practical caring roles & unmet needsMore information about dementia in community awareness make roles easier Isolated Informal carers felt “tied to the house” Formal carers felt “working alone is a downside” Wanted more time to spend caring Not just on practical tasks Also to promote social support and interaction Paid dementia care workers have the option to work part-time or, on a casual basis where they can control the number of hours they work. Workers also have the option to cease employment and their multiple caring roles. Informal carers do not have such choices. Despite these differences, both carer types discussed similar practical aspects of the caring role and highlighted several unmet needs in their roles. Informal and formal carers wanted more information about dementia. In particular, both acknowledged that more awareness about dementia in the community is needed, and that increasing awareness would make their roles easier. Informal and formal carers reported problems with isolation. Informal carers felt “tied to the house”, while formal carers felt “working alone was a downside”. Other convergent findings related to the need for more allotted time to spend with people with dementia, with a focus not just on performing practical tasks, but also tasks that promote social support and interaction. Dr K Elliott © 2013
Coping with care roles Informal carers Formal care workersCounselling and psychological assessment and treatment Formal care workers Need for reflective work practices (e.g., regular meetings with co-workers to discuss clients care needs and “debrief”) Both carer types Want better access to financial assistance and resources (e.g., electronic lift chairs) While both types of carers reflected similar needs, their roles differed in intensity by the number of caring hours with the same care recipient and familial relationship ties. This was found to contribute a difference in coping needs. Coping with care roles While informal carers highlighted a need for individual support to help them cope in their care roles, such as access to counselling and psychological assessment and treatment, formal carer workers reported no such need. Instead, formal paid carers reported a need for reflective work practices where they could attend regular meetings with co-workers to discuss in a professional manner the clients they were caring for and seek advice when needed. This was seen by workers as an opportunity to “debrief” and cope with the demands of the caring role and was described as a part of a new concept called - occupational communion (which is reported elsewhere). While formal carers seek peer social interaction to manage their isolating work, informal carers want more specialised psychological assistance. In addition to social and psychological support, both carer types identified a need for more financial assistance and better access to resources. While informal carers wanted services provided with no cost and better respite options, formal carers wanted better remuneration and improvements in financial support to perform job duties (e.g., access to resources for clients such as electronic lift chairs and financial support to maintain transport). All carers acknowledged that financial support would help them to cope better with their roles, and would reduce barriers to quality care. Dr K Elliott © 2013
Positive care relationshipInformal carers on workers “appreciative of workers” “need acknowledgement of their good work” “use kind speech” “listen and act” Formal care workers on people with dementia and their carers Personal need for interaction with others Important skills included “listening”, “being respectful and empathic” Both carer types Views on each other were generally positive, minority some concerns Good relationship meant good care Positive care relationship For the majority, carers’ views on each other are positive, however, for a minority of carers there were some concerns. The positive experiences of informal carers show they “were appreciative of workers”, consider them “very helpful” and suggest they “need acknowledgement for their good work”. Informal carers said that formal care workers “use kind speech” are “caring and considerate”, and that “they listen and act”. Care workers held a shared view and reported that “listening”, “being respectful and empathic” helped the professional caring relationship. Care workers’ positive experiences of people with dementia and their informal carers included that they “they enjoyed being with their clients” and that offering support created positive feelings. There were also examples where participants described how a good relationship meant good care – as good rapport, familiarity of the worker was perceived to lead to low care refusals. Dr K Elliott © 2013
Challenges for the care relationshipInformal carers “workers are good once they are established” “workers need to care more” “lack understanding about disability” Formal care workers “conflict with carers and family members” “unrealistic demands” of clients and “unsupportive and critical families” Both carer types Starting a relationship with a person with dementia Challenges for the care relationship Informal carers and formal care workers both acknowledged the challenges associated with starting the relationship with the person with dementia. In particular, workers identified that engaging the person with dementia was difficult, and informal carers reported that “workers are good once they are established”. Informal carers had some negative views of formal care workers’ attitudes, skills and knowledge, for example “workers need to care more” and “lack understanding about disability (one example related to a person with dementia who also had vision impairment)”. Formal care workers mentioned that “conflict with carers and family members”, “unrealistic demands” of clients and “unsupportive and critical families” all make the relationship a challenge. Dr K Elliott © 2013
Workforce Informal carers Formal carer workers Both carer typesstaff shortages can influence the continuity of care for the person with dementia low numbers of specialised health professionals in their area, workers need training and knowledge of dementia Formal carer workers more specialised training higher levels of qualifications to be held by workers in dementia care in the future. changes in the clients they care for can be difficult to manage, particularly in light of the loss of relationship and trust that was established over time recognised that worker knowledge of dementia helps the caring role Both carer types Worker continuity a concern Carers’ perceived gaps in workers skills that resulted in an agreed need for workforce development. Workforce Informal and formal carers both raised concerns about workforce issues that are distinctive to the regional situation. While informal carers showed concern for low numbers of specialised health professionals in their area, formal carer workers recognised the need for more specialised training and higher levels of qualifications to be held by workers in dementia care in the future. Worker continuity was also a concern expressed by both carer types, with informal carers recognising how staff shortages can influence the continuity of care for the person with dementia. Formal care workers highlighted how changes in the clients they care for can be difficult to manage, particularly in light of the loss of relationship and trust that was established over time. Informal carers consistently commented that workers need training and knowledge of dementia, while formal care workers recognised that knowledge of dementia helps the caring role. Dr K Elliott © 2013
Community-based servicesInformal carers operate under a “case management approach”, as “enhanced communication within services”, and “more flexibility” for individuals needs were required “companionship” for care recipients a need Formal carer workers more services were needed to focus on the social participation of people with dementia importance of making time to “have a cup of tea” to provide social interaction Both carer types Community excursions and more social activities designed for people with dementia were desired by carers. improvements in funding would assist problems of access to resources for people with dementia and their carers Community-based services Informal carers and formal care workers both mentioned problems, and challenges with current community-based dementia support services and ideas to improve these services for the future. Ideas did not diverge greatly for informal and formal carers and there was commonality across themes. Informal carers suggested ways to improve services in dementia care were to operate under a “case management approach”, as “enhanced communication within services”, and “more flexibility” for individuals’ needs were required. Workers reported similar themes suggesting co-ordination of dementia care as a challenge for the future. Further review of themes found an alignment between informal carers and formal care workers on their reports for more funding support for resources and community care, a need for professional standards, and concerns about the organisational system in which community dementia care operates. In particular, carers agreed that more services were needed to focus on the social participation of people with dementia. Informal carers requested “companionship” for care recipients, and formal carers acknowledged the importance of making time to “have a cup of tea” to provide social interaction. Community excursions and more social activities designed for people with dementia were desired by carers. Both carer types recognised that improvements in funding would assist problems of access to resources for people with dementia and their carers. Dr K Elliott © 2013
Quotes “I would like to have more support ‘cos I am tied to the house. The two support workers are pleasant and helpful, but we want more skills and qualified workers” A comment made by a female informal carer. “There will be more clients and I think probably there has to be more information for us on how to handle the situation and more education for us. Like training, for example” A comment made by a female formal care worker. This slide shows an example how informal carers and formal care workers aligned. The first quote is from an informal carer and she commented- “I would like to have more support because I am tied to the house. The two support workers are pleasant and helpful, but we want more skills and qualified workers”. The second quote is from a formal carer worker – who is also female, and she commented “There will be more clients and I think probably there has to be more information for us on how to handle the situation and more education for us. Like training, for example” So these quotes highlight that there is a strong alignment between both types of carers. Dr K Elliott © 2013
Strong alignment between carersmore information about the services available better community understanding about dementia needed specialised training for workers was commonly reported a desire to improve the consistency of care more flexible services Limitations – data collected using different methods Overall, carers agreed that more information about the services available and better community understanding about dementia was needed. In addition, specialised training for workers was commonly reported by both carers. Carers also had a desire to improve the consistency of care for people with dementia, and sought more flexible services. However, it is important to acknowledge the limitations of this study. While data from each carer type was qualitative and analysed using the same coding procedure, the data was collected using different methods (just to remind you there was a discussion group for informal carers, where as individual interviews were conducted with workers). This may influence the findings. Dr K Elliott © 2013
Conclusion Carers want improvements in access toinformation and support, workforce training and service delivery in the community setting. A broad approach should be applied to capacity building for community-based dementia care. May include strategies that improve community dementia awareness, workforce skills and organisational systems to reform future services. In conclusion, informal and formal dementia carers aligned to show carers want improvements in access to information and support, workforce training and service delivery in the community setting. The findings suggest a broad approach should be applied to capacity building for community-based dementia care. This approach may include strategies that improve community dementia awareness, workforce skills and organisational systems to reform future services. Dr K Elliott © 2013
References ABS. (2012 ) Cause of Death, Australia, Canberra: Australian Bureau of Statistics. AE. (2009). Making Choices: Future Dementia Care; Projections, Problems and Preferences: Access Economics for Alzheimer's Australia. AE. (2005). The Economic Value of Informal Care, Report for Carers Australia by Access Economics: Carers Australia. AIHW. (2007). Dementia in Australia: National Data Analysis and Development: Cat. No. AGE 53. Canberra: Australian Institute of Health and Welfare. Birch, D., & Draper, J. (2008). A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. Journal of Clinical Nursing, 17(9), doi: /j x Cuijpers, P. (2005). Depressive disorders in caregivers of dementia patients: A systematic review. Ageing and Mental Health, 9(4), doi: / Ferri, C., Prince, M., Brayne, C., Brodaty, H., Fratiglioni, L., Ganguli, M., Scazufca, M. (2005). Global prevalence of dementia: A Delphi consensus study. Lancet 336, Lee, I., Wang, H.-H., Chiou, C.-J. and Chang, S.-H. (2009). Family caregivers’ viewpoints towards quality of long-term care services for community-dwelling elders in Taiwan. Health & Social Care in the Community, 17, Litherland, R. (2008). Involving people with dementia in service development and evaluation. In M. Downs and B. Bowers (Eds.) Excellence in Dementia: Research into Practice (pp ) London: Open University Press. Smith, J. A., Flowers, P. and Larkin, M. (2009). Interpretive Phenomenological Analysis: Theory, Method, and Practice. Thousand Oaks, CA: Sage. USAA. (2009) Alzheimer's Disease Facts and Figures. Alzheimer’s and Dementia: The Journal of the Alzheimer's Association, 5(3), doi: /j.jalz WHO, & ADI. (2012). Dementia: A Public Health Priority. Geneva: World Health Organisation and Alzheimer's Disease International. Wimo, A., Winblad, B., Aguero-Torres, H., & von Strauss, E. (2003). The magnitude of dementia occurrence in the world. Alzheimer Disease and Associated Disorders, 17(2), Zarit, S. H., & Femia, E. E. (2008). A future for family care and dementia intervention research? Challenges and strategies. Ageing and Mental Health, 12(1), doi: / Dr K Elliott © 2013
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