Pub Date : 2022-05-09DOI: 10.1177/14713012221094979
Tongda Sun, Rangcheng Jia, Jodi Clarke, Ming M. Zhu, D. Dobbs, Yuntong Di, Xiaoxin Dong, H. Meng
Objectives To describe the perceived and unmet needs for health and social services and their relative importance among families coping with dementia in urban China. Methods We used data from a cross-sectional survey conducted between 2018 and 2019 in two cities in eastern China. Trained staff conducted structured interviews of family caregivers of people living with dementia at home to obtain individual characteristics as well as types of service needs of families coping with dementia. Service needs and utilization in 24 types of services across five domains (daily living, medical/nursing, rehabilitation, mental health, and other) were examined. Descriptive statistics were used to describe characteristics of the dyads and the ranking of services based on the percentage of respondents with perceived/unmet needs. Results A total of 170 (87.6%) family caregivers completed the interviews. The mean age of the care recipient was 77.2 years (range: 60–102) and 65.3% were female. The mean age of family caregivers was 58.4 years (range: 28–90), and 57.1% were female. The top five services used by the care recipients were: primary care, medication management, housekeeping, activities of daily living assistance, and adult day service. The five services with the most unmet needs were: legal assistance (42.7%), hospice care (44.7%), respiratory secretion management (expectoration) (57.6%), life enrichment activities (65.4%), and companion care (67.0%). Except for transportation and dressing/grooming, working and nonworking caregivers reported similar relative importance of service needs. Conclusions The findings suggest that people living with dementia and their family require a wide range of services and supports to live in the community. Future research and policy efforts should target the unmet needs of families to improve dementia care in the community and promote aging-in-place.
{"title":"Perceived and unmet needs for health and social services among families coping with dementia in China: A descriptive study","authors":"Tongda Sun, Rangcheng Jia, Jodi Clarke, Ming M. Zhu, D. Dobbs, Yuntong Di, Xiaoxin Dong, H. Meng","doi":"10.1177/14713012221094979","DOIUrl":"https://doi.org/10.1177/14713012221094979","url":null,"abstract":"Objectives To describe the perceived and unmet needs for health and social services and their relative importance among families coping with dementia in urban China. Methods We used data from a cross-sectional survey conducted between 2018 and 2019 in two cities in eastern China. Trained staff conducted structured interviews of family caregivers of people living with dementia at home to obtain individual characteristics as well as types of service needs of families coping with dementia. Service needs and utilization in 24 types of services across five domains (daily living, medical/nursing, rehabilitation, mental health, and other) were examined. Descriptive statistics were used to describe characteristics of the dyads and the ranking of services based on the percentage of respondents with perceived/unmet needs. Results A total of 170 (87.6%) family caregivers completed the interviews. The mean age of the care recipient was 77.2 years (range: 60–102) and 65.3% were female. The mean age of family caregivers was 58.4 years (range: 28–90), and 57.1% were female. The top five services used by the care recipients were: primary care, medication management, housekeeping, activities of daily living assistance, and adult day service. The five services with the most unmet needs were: legal assistance (42.7%), hospice care (44.7%), respiratory secretion management (expectoration) (57.6%), life enrichment activities (65.4%), and companion care (67.0%). Except for transportation and dressing/grooming, working and nonworking caregivers reported similar relative importance of service needs. Conclusions The findings suggest that people living with dementia and their family require a wide range of services and supports to live in the community. Future research and policy efforts should target the unmet needs of families to improve dementia care in the community and promote aging-in-place.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1699 - 1713"},"PeriodicalIF":2.4,"publicationDate":"2022-05-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43663626","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}
Pub Date : 2022-05-08DOI: 10.1177/14713012221098251
Janani Sreenivasan, Manali Karmakar
from having access to this book, particularly from the standpoint of caregiving. The book has succeeded in communicating what it feels to be a primary caregiver for a long period of time and how much emotional and physical investment it takes to traverse this path. Falik has skillfully woven together a wonderful account of his journey with Marilynn while also providing vast resources of dementia caregiving expertise.
{"title":"Book Review: And every morning the way home gets longer and longer: A book review","authors":"Janani Sreenivasan, Manali Karmakar","doi":"10.1177/14713012221098251","DOIUrl":"https://doi.org/10.1177/14713012221098251","url":null,"abstract":"from having access to this book, particularly from the standpoint of caregiving. The book has succeeded in communicating what it feels to be a primary caregiver for a long period of time and how much emotional and physical investment it takes to traverse this path. Falik has skillfully woven together a wonderful account of his journey with Marilynn while also providing vast resources of dementia caregiving expertise.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"2098 - 2100"},"PeriodicalIF":2.4,"publicationDate":"2022-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46858756","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}
Pub Date : 2022-05-04DOI: 10.1177/14713012221086702
Jessica Monsees, Tim Schmachtenberg, Jochen René Thyrian
Background Close to 12 million people of migrant origin who are 65 years or older live in different European countries. In the European Union (EU) and the European Free Trade Association (EFTA) countries, approximately half a million are estimated to have dementia. This rate is expected to increase in the coming decades. People of migrant origin who develop dementia and their families face challenges people without migration backgrounds do, but due to cultural differences, additional challenges may arise. There is an increasing need for interculturally sensitive care. There is research on certain aspects of intercultural care and this study will be a comprehensive summary of current topics in intercultural care. Research question What factors of intercultural care for people of migrant origin with dementia can be identified? What requirements and aspects are necessary to ensure intercultural care? Method A systematic literature analysis in the databases PubMed, PsycInfo and Psychology and Behavioural Sciences Collection was conducted. Findings Thirty-nine articles were eligible for analysis. Enhancement in the areas diagnostics, education and information, healthcare services and healthcare professionals to ensure intercultural care is needed. Discussion Current evidence supports the need for (a) thorough education of people of migrant origin with dementia, their families and healthcare professionals, (b) collaborations among everyone involved, (c) embracing different cultures in healthcare services, (d) the implementation of a care navigator functioning as a contact person and connecting all relevant parties with one another and (e) dementia testing suitable to the target group to ensure culturally sensitive and appropriate care for people of migrant origin with dementia and their families.
近1200万65岁或以上的移民生活在不同的欧洲国家。在欧洲联盟(EU)和欧洲自由贸易联盟(EFTA)国家，估计约有50万人患有痴呆症。这一比率预计在未来几十年还会增加。患有痴呆症的移民及其家人面临着没有移民背景的人所面临的挑战，但由于文化差异，可能会出现额外的挑战。对跨文化敏感护理的需求日益增加。对跨文化关怀的某些方面有研究，本研究将是对当前跨文化关怀主题的全面总结。研究问题:对于患有痴呆症的移民的跨文化护理，可以确定哪些因素?确保跨文化关怀需要哪些要求和方面?方法对PubMed、PsycInfo、Psychology and Behavioural Sciences Collection数据库进行系统的文献分析。39篇文章符合分析条件。加强诊断、教育和信息、保健服务和保健专业人员等领域的工作，以确保需要跨文化护理。目前的证据支持需要(a)对患有痴呆症的移徙者、他们的家人和医疗保健专业人员进行全面教育，(b)所有相关人员之间的合作，(c)在医疗保健服务中接受不同的文化，(d)实施作为联络人并将所有相关方相互联系起来的护理导航员;(e)适合目标群体的痴呆症检测，以确保对患有痴呆症的移徙者及其家人提供文化敏感和适当的护理。
{"title":"Intercultural care for people of migrant origin with dementia – A literature analysis","authors":"Jessica Monsees, Tim Schmachtenberg, Jochen René Thyrian","doi":"10.1177/14713012221086702","DOIUrl":"https://doi.org/10.1177/14713012221086702","url":null,"abstract":"Background Close to 12 million people of migrant origin who are 65 years or older live in different European countries. In the European Union (EU) and the European Free Trade Association (EFTA) countries, approximately half a million are estimated to have dementia. This rate is expected to increase in the coming decades. People of migrant origin who develop dementia and their families face challenges people without migration backgrounds do, but due to cultural differences, additional challenges may arise. There is an increasing need for interculturally sensitive care. There is research on certain aspects of intercultural care and this study will be a comprehensive summary of current topics in intercultural care. Research question What factors of intercultural care for people of migrant origin with dementia can be identified? What requirements and aspects are necessary to ensure intercultural care? Method A systematic literature analysis in the databases PubMed, PsycInfo and Psychology and Behavioural Sciences Collection was conducted. Findings Thirty-nine articles were eligible for analysis. Enhancement in the areas diagnostics, education and information, healthcare services and healthcare professionals to ensure intercultural care is needed. Discussion Current evidence supports the need for (a) thorough education of people of migrant origin with dementia, their families and healthcare professionals, (b) collaborations among everyone involved, (c) embracing different cultures in healthcare services, (d) the implementation of a care navigator functioning as a contact person and connecting all relevant parties with one another and (e) dementia testing suitable to the target group to ensure culturally sensitive and appropriate care for people of migrant origin with dementia and their families.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1753 - 1770"},"PeriodicalIF":2.4,"publicationDate":"2022-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46810896","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}
Pub Date : 2022-05-01Epub Date: 2022-03-01DOI: 10.1177/14713012211067027
Leigh Hayden, Cristina Passarelli, Susan E Shepley, William Tigno
This scoping review focused on the existing scholarly literature exploring sensory interventions and immersive environments developed for, and used by, older adults living with dementia. The purpose of the scoping review is 1) to understand the various sensory interventions that have been developed, used, and have provided data to show how such interventions are expected to impact the lives of individuals living with dementia; and 2) to understand how the field is moving forward. We chose to map the literature to understand the types of interventions, the types of outcomes measured, and the contexts of their implementation. Our search was constrained to references from 1990 to 1 June 2019 in the following databases: Academic Search Complete, CINAHL Complete, MEDLINE, PsycINFO databases, and Summon Search discovery layer. We screened 2305 articles based on their titles and abstracts, and 465 were sent to full text review, of which 170 were included in our full text extraction. Once the data were extracted, we created emic categories, which emerged from the data, for data that were amenable to categorization (e.g., study setting, intervention type, and outcome type). We developed ten different categories of interventions: art, aromatics, light, multi-component interventions, multisensory rooms, multisensory, music, nature, touch, and taste. Sensory interventions are a standard psychosocial approach to managing the personal expressions commonly experienced by people living with dementia. Our findings can help providers, caregivers, and researchers better design interventions for those living with dementia, to help them selectively choose interventions for particular outcomes and settings. Two areas emerging in the field are nature interventions (replacing traditional "multisensory rooms" with natural environments that are inherently multisensory and engaging) and multi-component interventions (where cognitive training programs are enhanced by adding sensory components).
{"title":"A scoping review: Sensory interventions for older adults living with dementia.","authors":"Leigh Hayden, Cristina Passarelli, Susan E Shepley, William Tigno","doi":"10.1177/14713012211067027","DOIUrl":"10.1177/14713012211067027","url":null,"abstract":"<p><p>This scoping review focused on the existing scholarly literature exploring sensory interventions and immersive environments developed for, and used by, older adults living with dementia. The purpose of the scoping review is 1) to understand the various sensory interventions that have been developed, used, and have provided data to show how such interventions are expected to impact the lives of individuals living with dementia; and 2) to understand how the field is moving forward. We chose to map the literature to understand the types of interventions, the types of outcomes measured, and the contexts of their implementation. Our search was constrained to references from 1990 to 1 June 2019 in the following databases: Academic Search Complete, CINAHL Complete, MEDLINE, PsycINFO databases, and Summon Search discovery layer. We screened 2305 articles based on their titles and abstracts, and 465 were sent to full text review, of which 170 were included in our full text extraction. Once the data were extracted, we created emic categories, which emerged from the data, for data that were amenable to categorization (e.g., study setting, intervention type, and outcome type). We developed ten different categories of interventions: art, aromatics, light, multi-component interventions, multisensory rooms, multisensory, music, nature, touch, and taste. Sensory interventions are a standard psychosocial approach to managing the personal expressions commonly experienced by people living with dementia. Our findings can help providers, caregivers, and researchers better design interventions for those living with dementia, to help them selectively choose interventions for particular outcomes and settings. Two areas emerging in the field are nature interventions (replacing traditional \"multisensory rooms\" with natural environments that are inherently multisensory and engaging) and multi-component interventions (where cognitive training programs are enhanced by adding sensory components).</p>","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1416-1448"},"PeriodicalIF":2.4,"publicationDate":"2022-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45703997","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}
Pub Date : 2022-04-28DOI: 10.1177/14713012221093879
X. Xu, D. Leung, A. Leung, R. Kwan, Tingna Liang, Ai Jun Chai
Leisure activities are essential for family caregivers of loved ones with dementia living in the community, yet these caregivers tend not to engage in them, especially in China, wherein it may have a negative impact on their physical and psychological health. To date, limited knowledge exists regarding underlying reasons that deter these family caregivers from doing leisure activities. This study aims to explore perceptions of family caregivers of people living with dementia and their engagement in leisure activities. A qualitative descriptive research design was used with semi-structured, face-to-face, individual in-depth interviews. The data were collected in Shijiazhuang, China between October and November 2019. Content analysis was used to develop categories. Results of 20 family caregivers (5 men and 15 women, mean age = 55.6±12.7) reported their perceptions under four main categories: (i) “the condition of leisure life,” (ii) “needs for leisure activities,” (iii) “reasons for the reluctance to do leisure activities,” and (iv) “motivations supporting the implementation of leisure activities.” In addition to the heavy caregiving workload and lack of support, traditional Chinese beliefs including filial commitment and “fatalistic voluntarism” were the reasons that prevented Chinese family caregivers of people living with dementia from doing leisure activities. However, engaging their loved ones in leisure activities, like doing exercise together, could motivate family caregivers themselves to participate in leisure activities. These findings encourage healthcare professionals to consider the influence of culture on family caregivers’ engagement in leisure activities which is one of the ways to reduce stress. Family caregivers may benefit from the leisure activities by learning how to better cope with and balance caregiving tasks with their leisure pursuits in the community.
{"title":"“Am I entitled to take a break in caregiving?”: Perceptions of leisure activities of family caregivers of loved ones with dementia in China","authors":"X. Xu, D. Leung, A. Leung, R. Kwan, Tingna Liang, Ai Jun Chai","doi":"10.1177/14713012221093879","DOIUrl":"https://doi.org/10.1177/14713012221093879","url":null,"abstract":"Leisure activities are essential for family caregivers of loved ones with dementia living in the community, yet these caregivers tend not to engage in them, especially in China, wherein it may have a negative impact on their physical and psychological health. To date, limited knowledge exists regarding underlying reasons that deter these family caregivers from doing leisure activities. This study aims to explore perceptions of family caregivers of people living with dementia and their engagement in leisure activities. A qualitative descriptive research design was used with semi-structured, face-to-face, individual in-depth interviews. The data were collected in Shijiazhuang, China between October and November 2019. Content analysis was used to develop categories. Results of 20 family caregivers (5 men and 15 women, mean age = 55.6±12.7) reported their perceptions under four main categories: (i) “the condition of leisure life,” (ii) “needs for leisure activities,” (iii) “reasons for the reluctance to do leisure activities,” and (iv) “motivations supporting the implementation of leisure activities.” In addition to the heavy caregiving workload and lack of support, traditional Chinese beliefs including filial commitment and “fatalistic voluntarism” were the reasons that prevented Chinese family caregivers of people living with dementia from doing leisure activities. However, engaging their loved ones in leisure activities, like doing exercise together, could motivate family caregivers themselves to participate in leisure activities. These findings encourage healthcare professionals to consider the influence of culture on family caregivers’ engagement in leisure activities which is one of the ways to reduce stress. Family caregivers may benefit from the leisure activities by learning how to better cope with and balance caregiving tasks with their leisure pursuits in the community.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1682 - 1698"},"PeriodicalIF":2.4,"publicationDate":"2022-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48392296","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}
Pub Date : 2022-04-22DOI: 10.1177/14713012221092212
T. Okamura, C. Ura, M. Shimmei, Akinori Takase, Ryosho Shoji, Yukan Ogawa
Aim Faith-based organizations are a potential global resource; however, details of their activities have not been fully explored in the academic literature. In Japan, little is known about delivering support for dementia caregivers in a faith-based setting. In this study, we spoke with priests who started carers’ cafés to support people who have dementia and people who care for them. These “carers’ cafés” are set up in temples and this movement is slowly expanding. The aim of this study was to (1) provide a detailed description of a carers’ café and (2) report the reflections of the Buddhist priests who have been involved in the project from the beginning. Methods We conducted in-depth interviews with five Buddhist priests who pioneered the carers’ café movement, and conducted a thematic analysis of the transcripts using a qualitative descriptive approach. Results Six prominent themes were identified: “A carers’ café aligns with Buddhist doctrine,” “...reveals the strengths of Buddhism and its temples,” “...facilitates priests’ personal growth,” and “...introduces viewpoints from outside of Buddhism.” Conclusions Carers’ cafés set up in temples have a positive impact on the Buddhist priests who are involved and on the visitors. One possible reason for this is that the relationship between the temple and the local residents has a long history and thus provides a sense of security for those who are suffering from the realities related to dementia. To create a more inclusive society, it is necessary for secular entities to support this new movement.
{"title":"Reflections of Buddhist priests who started a dementia carers’ café in Japan","authors":"T. Okamura, C. Ura, M. Shimmei, Akinori Takase, Ryosho Shoji, Yukan Ogawa","doi":"10.1177/14713012221092212","DOIUrl":"https://doi.org/10.1177/14713012221092212","url":null,"abstract":"Aim Faith-based organizations are a potential global resource; however, details of their activities have not been fully explored in the academic literature. In Japan, little is known about delivering support for dementia caregivers in a faith-based setting. In this study, we spoke with priests who started carers’ cafés to support people who have dementia and people who care for them. These “carers’ cafés” are set up in temples and this movement is slowly expanding. The aim of this study was to (1) provide a detailed description of a carers’ café and (2) report the reflections of the Buddhist priests who have been involved in the project from the beginning. Methods We conducted in-depth interviews with five Buddhist priests who pioneered the carers’ café movement, and conducted a thematic analysis of the transcripts using a qualitative descriptive approach. Results Six prominent themes were identified: “A carers’ café aligns with Buddhist doctrine,” “...reveals the strengths of Buddhism and its temples,” “...facilitates priests’ personal growth,” and “...introduces viewpoints from outside of Buddhism.” Conclusions Carers’ cafés set up in temples have a positive impact on the Buddhist priests who are involved and on the visitors. One possible reason for this is that the relationship between the temple and the local residents has a long history and thus provides a sense of security for those who are suffering from the realities related to dementia. To create a more inclusive society, it is necessary for secular entities to support this new movement.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1856 - 1868"},"PeriodicalIF":2.4,"publicationDate":"2022-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48543422","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}
Pub Date : 2022-04-18DOI: 10.1177/14713012221076954
Stefan Guerra, T. James, P. Rapaport, G. Livingston
Introduction Most studies of the Latin American immigrant experience and care for relatives living with dementia have been in the United States (US). In the United Kingdom (UK), unlike the US, most Latin Americans are first generation immigrants and are a rapidly increasing population. Therefore, we aimed to explore the UK experiences of Latin Americans caring for a relative with dementia. Methods We purposively recruited UK-based Latin American family carers of people with dementia ensuring maximum diversity. We conducted semi-structured qualitative interviews (in English or Spanish) with 11 family carers, stopping recruiting when we reached thematic saturation. We took an inductive thematic analytic approach. Findings Four main themes were identified: (1) Family comes first, particularly older people, leading to an obligation to care; (2) dementia as an illness that is accepted and talked about, which is regarded as positive with close networks but not wider society; (3) difficult behaviours are not the responsibility of the person with dementia, who is often conceptualised as a child; and (4) caring expectations lead to incompatibility with formal services, and a reluctance to leave people with dementia alone. Conclusions Familial obligation is the driver for family carers and acceptance of the illness helped despite adversities. Openness to talk about dementia with close networks was distinctive and helpful, contrasting with wider society, where greater awareness of dementia is needed. Considering the person with dementia as a child did not seem to undermine personhood and enabled maintenance of compassion. The relative with dementia was a priority. There was a lack of culturally and linguistically appropriate services, thus restricting family carers’ ability to fulfil other roles, such as parental.
{"title":"Experience of UK Latin Americans caring for a relative living with dementia: A qualitative study of family carers","authors":"Stefan Guerra, T. James, P. Rapaport, G. Livingston","doi":"10.1177/14713012221076954","DOIUrl":"https://doi.org/10.1177/14713012221076954","url":null,"abstract":"Introduction Most studies of the Latin American immigrant experience and care for relatives living with dementia have been in the United States (US). In the United Kingdom (UK), unlike the US, most Latin Americans are first generation immigrants and are a rapidly increasing population. Therefore, we aimed to explore the UK experiences of Latin Americans caring for a relative with dementia. Methods We purposively recruited UK-based Latin American family carers of people with dementia ensuring maximum diversity. We conducted semi-structured qualitative interviews (in English or Spanish) with 11 family carers, stopping recruiting when we reached thematic saturation. We took an inductive thematic analytic approach. Findings Four main themes were identified: (1) Family comes first, particularly older people, leading to an obligation to care; (2) dementia as an illness that is accepted and talked about, which is regarded as positive with close networks but not wider society; (3) difficult behaviours are not the responsibility of the person with dementia, who is often conceptualised as a child; and (4) caring expectations lead to incompatibility with formal services, and a reluctance to leave people with dementia alone. Conclusions Familial obligation is the driver for family carers and acceptance of the illness helped despite adversities. Openness to talk about dementia with close networks was distinctive and helpful, contrasting with wider society, where greater awareness of dementia is needed. Considering the person with dementia as a child did not seem to undermine personhood and enabled maintenance of compassion. The relative with dementia was a priority. There was a lack of culturally and linguistically appropriate services, thus restricting family carers’ ability to fulfil other roles, such as parental.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1574 - 1595"},"PeriodicalIF":2.4,"publicationDate":"2022-04-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49508131","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}
Pub Date : 2022-04-18DOI: 10.1177/14713012221082369
Siren Eriksen, E. Grov, T. L. Ibsen, A. M. Mork Rokstad, E. Telenius
Introduction People with dementia undergo extensive bodily changes during the course of dementia. Even though this is largely unrecognised in the literature, these changes greatly impact on the persons’ experiences of living with dementia. Consequently, health care professionals and family caregivers need to be aware of the implications this has for delivering care to people with dementia. Hence, a systematic review that synthesises the knowledge on this topic is called for. Method This article presents a qualitative systematic meta-synthesis of interview studies with people with dementia. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Program criteria for qualitative studies were used to appraise the studies. Thirty-nine qualitative research studies were included in the review. The analysis followed the principles of interpretive synthesis. Findings When exploring people’s experiences of their body when living with dementia, four categories emerge: (1) My body works; (2) My body betrays me; (3) Understanding and adapting to my body’s changes; and (4) My body in relation to others. Discussion/Conclusion Every individual has their own personal experience of living with dementia; however, if health professionals fail to regard the body as more than an object, this may lead to the person’s alienation both from the relation and from the body. The lived body experience has relational aspects as people with dementia are aware that others observe them, and they also observe others. Others’ behaviour may affect the person’s experience of body; one can perceive oneself as approved or denounced. People with dementia describe that a body that is capable and strong gives access to the world and to participation.
{"title":"The experience of lived body as expressed by people with dementia: A systematic meta-synthesis","authors":"Siren Eriksen, E. Grov, T. L. Ibsen, A. M. Mork Rokstad, E. Telenius","doi":"10.1177/14713012221082369","DOIUrl":"https://doi.org/10.1177/14713012221082369","url":null,"abstract":"Introduction People with dementia undergo extensive bodily changes during the course of dementia. Even though this is largely unrecognised in the literature, these changes greatly impact on the persons’ experiences of living with dementia. Consequently, health care professionals and family caregivers need to be aware of the implications this has for delivering care to people with dementia. Hence, a systematic review that synthesises the knowledge on this topic is called for. Method This article presents a qualitative systematic meta-synthesis of interview studies with people with dementia. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Program criteria for qualitative studies were used to appraise the studies. Thirty-nine qualitative research studies were included in the review. The analysis followed the principles of interpretive synthesis. Findings When exploring people’s experiences of their body when living with dementia, four categories emerge: (1) My body works; (2) My body betrays me; (3) Understanding and adapting to my body’s changes; and (4) My body in relation to others. Discussion/Conclusion Every individual has their own personal experience of living with dementia; however, if health professionals fail to regard the body as more than an object, this may lead to the person’s alienation both from the relation and from the body. The lived body experience has relational aspects as people with dementia are aware that others observe them, and they also observe others. Others’ behaviour may affect the person’s experience of body; one can perceive oneself as approved or denounced. People with dementia describe that a body that is capable and strong gives access to the world and to participation.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1771 - 1799"},"PeriodicalIF":2.4,"publicationDate":"2022-04-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43033762","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}
Pub Date : 2022-04-17DOI: 10.1177/14713012221088724
H. Menne
{"title":"Book Review: Psychodynamic approaches to the experience of dementia","authors":"H. Menne","doi":"10.1177/14713012221088724","DOIUrl":"https://doi.org/10.1177/14713012221088724","url":null,"abstract":"","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1869 - 1870"},"PeriodicalIF":2.4,"publicationDate":"2022-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48184811","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}
Pub Date : 2022-04-14DOI: 10.1177/14713012221084521
J. Liddle, Peter Worthy, D. Frost, E. Taylor, Dubhglas Taylor, R. Beleno, Daniel Angus, Janet Wiles, A. Angwin
Background With increasing focus on living well with dementia, technology has been identified as having potential benefits for safety, independence and wellbeing. Despite a large growth in specialised technology development, there has been limited uptake. There is a need to understand the current use and needs related to technology for people living with dementia and their care partners (informal carers). Methods As part of a participatory design study, a qualitative inquiry into technology experiences and needs was undertaken within an interpretive description approach. A cross-disciplinary team including living experience experts (people living with dementia, unpaid care partners) was involved. Semi-structured interviews, including sharing technology locations and supports, were conducted, audio-recorded and transcribed. Key aspects of the technology use experience were constructed. Findings Thirteen people living with dementia and 21 care partners participated in the study. Two core aspects of technology use were identified: Lots of moving parts: the complex context, and A technology cycle: the use and non-use. The findings indicated that the context involved an individual configuration of multiple factors including the user, their technology identity, their supporters, the technology and the environment. The experience is underpinned by shifting foundations created by constantly changing technologies and user characteristics. The cycle of use and non-use identified the processes required to maintain technology engagement. Conclusion The use of technology for people living with dementia is complex and personal. Future technology development, policies and practices need to consider this complexity and the effort required to keep using technology to realise the benefits.
{"title":"Personal and complex: The needs and experiences related to technology use for people living with dementia","authors":"J. Liddle, Peter Worthy, D. Frost, E. Taylor, Dubhglas Taylor, R. Beleno, Daniel Angus, Janet Wiles, A. Angwin","doi":"10.1177/14713012221084521","DOIUrl":"https://doi.org/10.1177/14713012221084521","url":null,"abstract":"Background With increasing focus on living well with dementia, technology has been identified as having potential benefits for safety, independence and wellbeing. Despite a large growth in specialised technology development, there has been limited uptake. There is a need to understand the current use and needs related to technology for people living with dementia and their care partners (informal carers). Methods As part of a participatory design study, a qualitative inquiry into technology experiences and needs was undertaken within an interpretive description approach. A cross-disciplinary team including living experience experts (people living with dementia, unpaid care partners) was involved. Semi-structured interviews, including sharing technology locations and supports, were conducted, audio-recorded and transcribed. Key aspects of the technology use experience were constructed. Findings Thirteen people living with dementia and 21 care partners participated in the study. Two core aspects of technology use were identified: Lots of moving parts: the complex context, and A technology cycle: the use and non-use. The findings indicated that the context involved an individual configuration of multiple factors including the user, their technology identity, their supporters, the technology and the environment. The experience is underpinned by shifting foundations created by constantly changing technologies and user characteristics. The cycle of use and non-use identified the processes required to maintain technology engagement. Conclusion The use of technology for people living with dementia is complex and personal. Future technology development, policies and practices need to consider this complexity and the effort required to keep using technology to realise the benefits.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"12 10","pages":"1511 - 1531"},"PeriodicalIF":2.4,"publicationDate":"2022-04-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41300023","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}
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