Dementia-International Journal of Social Research and Practice最新文献

{"title":"Editorial: Innovative Practice","authors":"J. Moriarty","doi":"10.1177/1471301219868397","DOIUrl":"https://doi.org/10.1177/1471301219868397","url":null,"abstract":"During the last decade, there has been increased recognition of the need and desirability of including people with dementia and their family carers and supporters as key stakeholders and active participants in all stages in the research process. Different models of involvement have developed, although it is widely accepted that progress has been uneven and that work still needs to be done (Bartlett, Hick, Houston, Gardiner, & Wallace, 2013; Charlesworth, 2018; Hayes, Costello, Nurock, Cornwall, & Francis, 2018). This issue of Innovative Practice takes three different accounts of involvement to highlight different examples of the importance of involving people with dementia and family carers in the full range of decisions, from technology aimed at improving people’s everyday lives to developing research protocols and programme implementation. The first article (Coetzer, 2019) is a case study of Mrs V (a pseudonym) who was referred for neuropsychiatric support after experiencing a stroke. She was particularly anxious about being unable to tell the time. Her family helped adapt a clock which indicated different time periods (morning, afternoon, evening, night) and meal times. The adapted clock was initially very effective but, as Mrs V’s cognitive abilities declined, its efficacy was reduced. Coetzer suggests that the clock example illustrates how tailored assistive technologies to which carers have contributed may result in better acceptance or ‘buy in’ and offer solutions where there are no existing technologies. At the same time, it needs to be recognised that carers will need support if the efficacy of any technologies to which they have contributed is reduced as the person’s condition progresses. The remaining contributions in this section (Giebel, Roe, Hodgson, Britt, & Clarkson, 2019; Swarbrick, Open Doors, EDUCATE, Davis, & Keady, 2019) draw on experiences from much larger scale studies. The second article by Swarbrick and colleagues (2019) describes the ‘CO-researcher INvolvement and Engagement in Dementia’ Model, or the COINED Model for short, which was co-produced with and alongside people living with dementia. The model was developed during the application stage of the Neighbourhoods","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"18 1","pages":"3159 - 3160"},"PeriodicalIF":2.4,"publicationDate":"2019-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219868397","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42180346","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A thematic analysis of Chinese people with dementia and family caregivers’ experiences of home care in China","authors":"Xiubin Zhang, C. Clarke, S. Rhynas","doi":"10.1177/1471301219861466","DOIUrl":"https://doi.org/10.1177/1471301219861466","url":null,"abstract":"Ageing in place is a key principle of older care services in many countries, especially in China where the social convention, cultural expectation and legal obligation emphasise that looking after parents is the children’s responsibility. As a result, the majority of older, frail Chinese have been cared for at home by their families. Previous studies have argued that being cared for at home contributes positively to the well-being and quality of life of older people and to economic cost. However, due to the sociocultural, economic and demographic changes in China, older people and their family caregivers are facing many challenges as they ‘age in place’ at home. This study aims to explore the meaning of family supported home care in China from the perspectives of people with dementia and family caregivers. The study is based on qualitative data collected from 24 people with dementia and family caregivers recruited from one mental health centre in Shandong province, China. Three main themes and nine subthemes were found: home care may create a sense of social isolation; home care is a burden; home care versus institutional care. The study suggests that while home care may bring social and psychological benefits, it also can be a barrier to building social connection, receiving social support, and other related services in China.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"19 1","pages":"2821 - 2835"},"PeriodicalIF":2.4,"publicationDate":"2019-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219861466","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47728147","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Intensive home care supports, informal care and private provision for people with dementia in Ireland","authors":"L. Carter, S. O’Neill, F. Keogh, M. Pierce, E. O'Shea","doi":"10.1177/1471301219863580","DOIUrl":"https://doi.org/10.1177/1471301219863580","url":null,"abstract":"Background This study analysed the cost of intensive home care packages for people with dementia living on the boundary of home care and residential care facilities in Ireland. The cost of community-based services and supports, including informal care and private out-of-pocket expenditure, was compared to the cost of public and private residential care. Methods The study recruited 42 people with dementia and/or their caregivers, who were living on the boundary of home care and residential care, to an in-depth study on the cost of care. The Resource Utilization in Dementia scale was used to collect data on the utilization of standard formal care and informal care by people with dementia in receipt of an intensive home care package. Information on private out-of-pocket expenditure on care was also collected. Unit costs were assigned and community-based care was compared with public and private residential care alternatives. Results The average weekly cost of home care, including the intensive home care package, standard formal community care provision, medications, consumption and housing, was estimated at €1127. This is lower than the average weekly cost of public long-stay care facilities (€1526) and around the same as for private nursing home fees in the Dublin region (€1149). When the opportunity cost valuation of informal care is included, the cost of home care is higher than all types of residential care. Adding private care expenditure further inflates the cost of home care. Conclusion Keeping highly dependent people with dementia living at home is not cheap and raises questions about optimal resource allocation on the boundary of home care and residential care. Even with significant public spending on intensive home care packages, family care costs remain high. So too does private out-of-pocket expenditure on care for some people with dementia.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"47 - 65"},"PeriodicalIF":2.4,"publicationDate":"2019-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219863580","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49007004","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Professionals’ views and experiences in supporting decision-making involvement for people living with dementia","authors":"C. Sinclair, Julie Bajic-Smith, M. Gresham, Meredith Blake, R. Bucks, S. Field, J. Clayton, Helen Radoslovich, M. Agar, S. Kurrle","doi":"10.1177/1471301219864849","DOIUrl":"https://doi.org/10.1177/1471301219864849","url":null,"abstract":"Background The provision of supported decision-making for people living with disabilities is an emerging area of practice and rights-based law reform, and is required under international law. Objectives This qualitative study aimed to understand how Australian health and legal professionals conceptualised their professional roles in the practice of providing decision-making support for people living with dementia. Methods The methods were informed by grounded theory principles. In-depth, semi-structured interviews were conducted with 28 health and legal professionals involved in providing care or services for people with dementia. Interviews explored how professionals described their practice of providing support for decision-making and how they conceptualised their roles. The analysis was underpinned by the theoretical perspective of symbolic interactionism. Results Participants described providing support across a range of decision domains, some of which were specific to their professional role. Four key themes were identified: ‘establishing a basis for decision-making’, ‘the supportive toolbox’, ‘managing professional boundaries’ and ‘individualist advocacy versus relational practice’. Participants identified a range of generic and specialised techniques they used to provide support for people with dementia. These techniques were applied subject to resource limitations and perceived professional obligations and boundaries. A continuum of professional practice, ranging from ‘individualist advocacy’ to ‘relational practice’ describes the approaches adopted by different professionals. Discussion Professionals conceptualised their role in providing support for decision-making through the lens of their own profession. Differences in positioning on the continuum of ‘individualist advocacy’ through to ‘relational practice’ had practical implications for capacity assessment, engaging with persons with impaired decision-making capacity, and the inclusion of supporters and family members in decision-making processes. Further progress in implementing supported decision-making (including through law and policy reform) will require an understanding of these inter-professional differences in perceived roles relating to the practice of providing decision-making support.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"84 - 105"},"PeriodicalIF":2.4,"publicationDate":"2019-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219864849","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42337626","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Exposing the mechanisms underlying successful animal-assisted interventions for people with dementia: A realistic evaluation of the Dementia Dog Project","authors":"L. Ritchie, Samuel Quinn, D. Tolson, Nick Jenkins, Barbara Sharp","doi":"10.1177/1471301219864505","DOIUrl":"https://doi.org/10.1177/1471301219864505","url":null,"abstract":"There is increasing recognition of animal-assisted interventions as a promising area of practice within health and social care for people living with dementia. However, much of the research focuses on benefits for those living in care homes and not in their own homes. The Dementia Dog Project is an innovative project that aims to support people with dementia to engage with dogs and to promote the use of dogs in dementia care in the community. The pilot project introduced a dementia assistance dog to four couples where one person had a diagnosis of dementia. The aim of this paper is to explore the mechanisms that can successfully expose the benefits of integrating dogs into dementia care by drawing on the findings of a realistic evaluation of the pilot phase of the Dementia Dog Project (2013–2015). A realistic evaluation, with its focus on context, mechanisms and outcomes illuminates why an approach may work in some situations but not in others. This makes it especially appropriate to the unique, complex experience of living with dementia and the early development stage of the programme. The analysis triangulated data from a range of primary and secondary sources including interviews with the project team, case reports, team meeting notes and transcripts of interviews with participants. The findings identified three mechanisms that help to unlock the most positive outcomes for both the participants and the dogs. These were (1) the human–animal bond, (2) relationship dynamics and (3) responsibility of caring. The findings presented within this paper provide essential information to inform and advance the planning for the use of assistance dogs for people with dementia.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"66 - 83"},"PeriodicalIF":2.4,"publicationDate":"2019-07-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219864505","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49367770","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Laura N Gitlin and Nancy A Hodgson, Better living with dementia. Implications for individuals, families, communities, and societies","authors":"M. Leszko","doi":"10.1177/1471301219862958","DOIUrl":"https://doi.org/10.1177/1471301219862958","url":null,"abstract":"","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"18 1","pages":"2361 - 2363"},"PeriodicalIF":2.4,"publicationDate":"2019-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219862958","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"65533892","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A comparison of a community-based dementia support programme and nursing home-based day care: Effects on carer needs, emotional burden and quality of life","authors":"A. M. van Haeften-van Dijk, F. Meiland, B. Hattink, Ton JEM Bakker, R. Dröes","doi":"10.1177/1471301219861767","DOIUrl":"https://doi.org/10.1177/1471301219861767","url":null,"abstract":"Objectives Within an implementation study, we investigated the effectiveness of a combined community-based day care programme for persons with dementia and their carers versus traditional psychogeriatric nursing home-based day care. The effects on needs, sense of competence, burden and quality of life of the family carers were studied. Methods A pretest–posttest control group design among family carers of people with dementia who joined community-based day care centres (n = 67) or nursing home-based day care centres (n = 64). Results After six months, family carers using community-based day care more often expressed an unmet need for support regarding psychological distress than carers utilising nursing home-based day care. No effect of community-based day care on sense of competence was found. However, carers with a low sense of competence at baseline using community-based compared to nursing home-based day care became less emotionally burdened by behaviour and mood problems of their relative. Conclusion and discussion: Overall, no added value of community-based day care on needs, sense of competence, burden and quality of life was found. Increased unmet needs on psychological distress may have been caused by the increased awareness of carers participating in the carer programme of community-based day care regarding their own unmet support needs. For carers with a low sense of competence, community-based day care proves to decrease the impact of behaviour and mood problems of their relative. A larger controlled follow-up study is recommended to understand the long-term effects of community-based day care over nursing home-based day care.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"19 1","pages":"2836 - 2856"},"PeriodicalIF":2.4,"publicationDate":"2019-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219861767","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44103088","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Assessing the impact of dementia inclusive environmental adjustment in the emergency department","authors":"M. Bracken-Scally, B. Keogh, L. Daly, Chiara Pittalis","doi":"10.1177/1471301219862942","DOIUrl":"https://doi.org/10.1177/1471301219862942","url":null,"abstract":"Objectives Acute hospitals, in particular the emergency department, can be disorienting for people living with dementia. As part of a larger project to improve care for people living with dementia, dementia-inclusive modifications were made to two emergency department bays in a large acute care hospital in Ireland. Modifications to spatial configuration included noise reduction, altered lighting and the addition of an orientation aid and fixed seating for relatives. Method A mixed methods approach was employed with both service user and service provider perspectives explored (survey of service providers (n = 16) and interviews with family carers (n = 10) at one time point and interviews with service providers (n = 8 and n = 5) and key stakeholders (n = 3) as well as audit data (at two time points) to evaluate the impact of the modifications made to the emergency department. Results Orientation and navigation within the modified bays were improved though technical issues with the orientation aid were highlighted. Further user information on the functionality of the adjustable lighting would be required to maximise its benefits. This lighting and use of calming colours, together with the addition of noise-reduction bay screens, served to reduce sensory stimulation. The provision of adequate space and seating for family carers was extremely beneficial. The removal of unnecessary equipment and use of new structures to store relevant clinical equipment were other positive changes implemented. A number of challenges in the design development of the modified bays were highlighted, as well as ongoing broader environmental challenges within the emergency department environment. Conclusion The findings suggest that the modified bays contributed positively to the experience of people living with dementia and their families in the emergency department.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"28 - 46"},"PeriodicalIF":2.4,"publicationDate":"2019-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219862942","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41601294","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Editorial: Innovative Practice","authors":"J. Moriarty","doi":"10.1177/1471301219862470","DOIUrl":"https://doi.org/10.1177/1471301219862470","url":null,"abstract":"","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"18 1","pages":"1934 - 1935"},"PeriodicalIF":2.4,"publicationDate":"2019-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219862470","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44946055","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Hanging on to Some Autonomy in Decisionmaking: How do Spouse Carers Support this?","authors":"D. Fetherstonhaugh, Jo-Anne Rayner, Laura Tarzia","doi":"10.1177/1471301216678104","DOIUrl":"https://doi.org/10.1177/1471301216678104","url":null,"abstract":"In Australia, the majority of people with dementia live in the community with informal care provided by family, commonly a spouse. A diagnosis of dementia is a threat to one’s personhood and is often accompanied by perceptions of future dependency, which will involve the inability to carry out conventional roles and complete everyday tasks including making decisions. Being able to make decisions, however, is part of being a ‘person’ and it is through relationships that personhood is defined and constructed. In face-to-face interviews with seven couples (a carer and person with dementia dyad) and two spouse carers, this study explored why, and how, spouse carers support continued involvement in decision-making for people with dementia. The findings highlight the importance of loving and respectful relationships in the development of strategies to support continued decision-making for people with dementia.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"18 1","pages":"1219 - 1236"},"PeriodicalIF":2.4,"publicationDate":"2019-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301216678104","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48049499","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"社会学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}