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

{"title":"Chris and Sally’s House: Adapting a home for people living with dementia (innovative practice)","authors":"C. Jais, S. Hignett, William Halsall, David H Kelly, Malcolm Cook, E. Hogervorst","doi":"10.1177/1471301219887040","DOIUrl":"https://doi.org/10.1177/1471301219887040","url":null,"abstract":"How can domestic housing be adapted to support people living with dementia staying in their own homes for as long as they choose? This paper describes the innovative practice of using evidence-based design personas in a building refurbishment project (Chris and Sally’s House) with a multidisciplinary team of architects, ergonomists, psychologists and experts. A 100 sqm Victorian two bedroom house was adapted to help educate house builders, carers and relatives on how to better support those living with dementia to live in their own home for longer. The design principles include clear sight lines, mobility support and provision for overnight carers.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"770 - 778"},"PeriodicalIF":2.4,"publicationDate":"2019-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219887040","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45137910","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":"Re-thinking the nature of day programs for people with dementia: Implications for research","authors":"Holly Symonds-Brown, C. Ceci, W. Duggleby, M. Purkis","doi":"10.1177/1471301219884429","DOIUrl":"https://doi.org/10.1177/1471301219884429","url":null,"abstract":"Day programs are commonly identified in dementia strategies as a solution for keeping people with dementia home for as long as possible. Limited research evidence is available to support these policy approaches, and much of what exists demonstrates equivocal results. While key day program researchers have called for improvements in methodological and theoretical efforts, we argue that basic assumptions concerning what a day program is, and how the effects of day programs should be studied, also require reconsideration. Problematization is a systematic review strategy used to identify and critique assumptions guiding research practices and knowledge development in a field of study. The approach entails a broad overview of a field of research alongside a close reading of key texts to identify prevailing assumptions about the object of study and how it can be known. The intent is to discern how these assumptions are influencing research practices and thus knowledge development. A review of historical texts and research literature reviews was used (1) to identify trends in day program research between 1990 and 2018 and (2) to support identification of influential and typical studies for closer analysis (n = 36). The outcome of our analysis of the research literature suggests three sets of assumptions that guide much of the day program research literature: dementia is mainly treated as a problem of the individual; day programs are treated as stand-alone units of substitute care; and the space of day programs is seen as a simple background to care. We argue that the assumptions regarding care and space have narrowed the field of research and contributed to the production of equivocal findings. We suggest alternative framings of notions of care and space, informed by a Science and Technology Studies’ approach to care practices, to generate knowledge about day programs that can usefully inform policy and practice.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"326 - 347"},"PeriodicalIF":2.4,"publicationDate":"2019-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219884429","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43287472","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":"Destigmatising dementia: The dangers of felt stigma and benevolent othering","authors":"J. Fletcher","doi":"10.1177/1471301219884821","DOIUrl":"https://doi.org/10.1177/1471301219884821","url":null,"abstract":"The destigmatisation of dementia through awareness raising campaigns and associated activities has become a key pillar of dementia studies and related activism. This anti-stigma agenda is undermined by a poor evidence base and inadequate operationalisations of stigma. Scambler’s distinction between felt stigma and enacted stigma provides a conceptual basis for improvement. Felt stigma encompasses negative self-appraisals and fears regarding the reactions of others, while enacted stigma describes active discriminatory behaviours. Awareness campaigns based around high-profile spokespeople and pathology-based models of dementia may effectively tackle enacted stigma, but they may also unintentionally exacerbate felt stigma. Distinguishing people with dementia as an exceptional group to elicit public sympathies promotes benevolent othering, unwittingly implying their negative otherness. This is problematic because felt stigma is typically more prevalent and deleterious to wellbeing than enacted stigma.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"417 - 426"},"PeriodicalIF":2.4,"publicationDate":"2019-11-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219884821","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44729932","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":"Music, spirituality and dementia: Exploring joint working between pastoral care professionals and music therapists to improve person-centred care for people with dementia (Innovative Practice)","authors":"Lyndsey Connolly, H. Moss","doi":"10.1177/1471301219885560","DOIUrl":"https://doi.org/10.1177/1471301219885560","url":null,"abstract":"This paper presents innovative practice in the area of interdisciplinary collaboration between pastoral care and music therapy professionals to meet the spiritual needs of people with dementia in a hospital environment. Our qualitative research identified the following themes to guide future endeavours in this area: Music has the capacity to facilitate spiritual expression; music therapy contributes to validating the individuality of the person with dementia; collaborative work between music therapy and pastoral care is worthy of further exploration. This study is one of few to address the potential for combining pastoral care and music therapy in the care of people with dementia.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"373 - 380"},"PeriodicalIF":2.4,"publicationDate":"2019-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219885560","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47248830","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":"In Our Community, Dementia Speaks: Pilot of a person-centered training targeting African-American caregivers of persons-living with dementia (innovative practice)","authors":"M. Aaron Guest, M. Smith","doi":"10.1177/1471301219885784","DOIUrl":"https://doi.org/10.1177/1471301219885784","url":null,"abstract":"African-Americans face higher rates of Alzheimer’s disease and other related dementias than any other group. With cases of Alzheimer’s disease and other related dementias expected to double by 2050 the African-American community stands to be disproportionally affected. Recognizing the need for culturally tailored programming for caregivers and those living with Alzheimer’s disease and other related dementias In Our Community, Dementia Speaks was developed through a community-participatory model of engagement. While pilot results showed a non-statistically significant increase in pre/posttest knowledge a more nuanced review of the data indicates success in changing attitudes and behaviors regarding the disease among caregivers. Results provide a guide for informing future interventions and improving existing programming.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"391 - 397"},"PeriodicalIF":2.4,"publicationDate":"2019-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219885784","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48342777","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":"Effective public involvement in the HoST-D Programme for dementia home care support: From proposal and design to methods of data collection (innovative practice)","authors":"C. Giebel, B. Roe, A. Hodgson, David Britt, P. Clarkson","doi":"10.1177/1471301216687698","DOIUrl":"https://doi.org/10.1177/1471301216687698","url":null,"abstract":"Public involvement is an important element in health and social care research. However, it is little evaluated in research. This paper discusses the utility and impact of public involvement of carers and people with dementia in a five-year programme on effective home support in dementia, from proposal and design to methods of data collection, and provides a useful guide for future research on how to effectively involve the public. The Home SupporT in Dementia (HoST-D) Programme comprises two elements of public involvement, a small reference group and a virtual lay advisory group. Involving carers and people with dementia is based on the six key values of involvement – respect, support, transparency, responsiveness, fairness of opportunity, and accountability. Carers and people with dementia gave opinions on study information, methods of data collection, an economic model, case vignettes, and a memory aid booklet, which were all taken into account. Public involvement has provided benefits to the programme whilst being considerate of the time constraints and geographical locations of members.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"18 1","pages":"3173 - 3186"},"PeriodicalIF":2.4,"publicationDate":"2019-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301216687698","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44414618","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":"The potential role of relatives in designing person-centred assistive technologies (innovative practice)","authors":"R. Coetzer","doi":"10.1177/1471301216688395","DOIUrl":"https://doi.org/10.1177/1471301216688395","url":null,"abstract":"The paper explores the important role of relatives in designing assistive technologies in collaboration with practitioners. A brief case study reports the collaborative design of a 24-hour clock to reduce the impact of visual–spatial impairment on a family member's ability to read time and prevent temporal disorientation.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"18 1","pages":"3161 - 3164"},"PeriodicalIF":2.4,"publicationDate":"2019-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301216688395","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46775483","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":"‘There’s more to life than money and health’: Family caregivers’ views on the role of Power of Attorney in proxy decisions about research participation for people living with dementia","authors":"V. Shepherd, R. Griffith, K. Hood, M. Sheehan, F. Wood","doi":"10.1177/1471301219884426","DOIUrl":"https://doi.org/10.1177/1471301219884426","url":null,"abstract":"People living with dementia may experience difficulties when making decisions for themselves in the later stages of the condition. While there are mechanisms in England and Wales for appointing an attorney to make decisions about welfare and finances on their behalf, there are no provisions for appointing an attorney to make future decisions about research participation. This is despite a growing focus on Advanced Care Planning and other processes that provide opportunities to discuss future preferences and ensure that decisions are made in line with those preferences. This qualitative study with 15 family caregivers who had acted as research proxies explored the role of Power of Attorney in their decisions about research, and their views about extending current legal arrangements to include research. Five themes were identified: the holistic nature of decision-making; the ‘power’ of attorney; making decisions by putting yourself in their shoes; support for bringing research under the umbrella of attorney arrangements and a unifying theme of trusting relationships. Legal provisions for prospectively appointing a research proxy may encourage discussion about future wishes and so enable decisions about research to be made that are in accordance with the person’s preferences and wishes. However, further consultation with the public including people living with dementia and their families, and a range of stakeholders is needed. Providing guidance to families, people living with dementia and the wider research community may provide greater clarity and improve decision-making in the meantime.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"308 - 325"},"PeriodicalIF":2.4,"publicationDate":"2019-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219884426","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45305585","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":"Difficulties and associated coping methods regarding visual hallucinations caused by dementia with Lewy bodies","authors":"A. Yumoto, S. Suwa","doi":"10.1177/1471301219879541","DOIUrl":"https://doi.org/10.1177/1471301219879541","url":null,"abstract":"Individuals who have dementia with Lewy bodies present various symptoms that differ from those associated with Alzheimer’s disease. Of the several characteristic symptoms of dementia with Lewy bodies, visual hallucinations often appear in the early stages of the disease, and some hallucinations cause people with dementia with Lewy bodies to experience unique difficulties in their daily lives. The aim of this paper is to clarify the visual hallucination-related difficulties experienced by people with dementia with Lewy bodies as well as their coping methods. Participants were 10 people with dementia with Lewy bodies who were living at home, with input also obtained from their family members. Data were collected through semi-structured interviews, and a qualitative content analysis was consequently performed. The qualitative analysis showed four primary difficulties in the period before a patient realizes that their visual hallucinations are a symptom of an underlying disease; these included “feeling something strange is happening” and “restrictions on activities.” Realizing that what they were experiencing was not real was a significant turning point for the participants, with some discovering this by discussing their apparitions with their families. It was consequently determined that, after an individual realizes that their hallucinations are indicative of a more serious condition, two further difficulties arise, including the “inability to discuss the visual hallucinations with friends and family.” With regard to coping methods, some participants reported rearranging their living environments to hide areas where hallucinations commonly appeared. This paper suggests that care is needed to help people with dementia with Lewy bodies recognize that their visual hallucinations are a manifestation of their illness. In particular, psychological support should be made available to address the anxiety caused by the appearance of visual hallucinations and to help patients adjust their environments to reduce or prevent the appearance of such hallucinations.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"291 - 307"},"PeriodicalIF":2.4,"publicationDate":"2019-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219879541","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47771441","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":"Being ‘alone’ striving for belonging and adaption in a new reality – The experiences of spouse carers of persons with dementia","authors":"L. Hammar, Christine L. Williams, Martina Summer Meranius, K. McKee","doi":"10.1177/1471301219879343","DOIUrl":"https://doi.org/10.1177/1471301219879343","url":null,"abstract":"Background and aim Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers’ experiences of caring for a partner with dementia, their everyday life as a couple and their support needs. Methods Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis. Results The analysis resulted in one overall theme Being ‘alone’ striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country; (2) Longing for a place for me and us; (3) Being a carer first and a person second; and (4) Being alone in a relationship. Conclusions The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple’s relationship for their mutual well-being.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"273 - 290"},"PeriodicalIF":2.4,"publicationDate":"2019-10-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/1471301219879343","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43215954","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}