Pub Date : 2022-03-18DOI: 10.1177/14713012211065313
Cecilia Moberg, Åke Grundberg, H. Konradsen, A. P. Kallström, A. Leung, Z. Kabir
Background A majority of persons with dementia in Sweden live in their own homes and are often cared for by family members. Caring for a family member may be a positive experience. It may, however, also be a negative experience as symptoms like disturbing behavior and delusions may be difficult to encounter. The burden of being a family caregiver has been shown to affect the caregivers’ quality of life. Objective To explore stakeholders’ perspectives on a potential mobile application through which family caregivers could be supported by healthcare professionals in caring for a person with dementia living at home. Method Eight individual interviews with family caregivers and a focus group with eight healthcare professionals specialized in dementia care were analyzed using content analysis method. Results The findings suggest that a mobile application can support family caregivers to meet their own needs in terms of finding structure in everyday life, how to get information and support in their own pace, and how to care for themselves. The findings also suggest the necessity of accessing relevant contact networks to be supported in the ability to care for a family member with dementia. Conclusion Healthcare and social services mediated support provided through user-friendly mobile application has the potential to support family caregivers both in taking care of a person with dementia and caring for themselves. Moreover, it is important that the information provided to family caregivers is personalized according to the needs of the family caregivers as the family member’s dementia advances.
{"title":"Meeting own needs and supporting ability to care: Family caregivers’ and health care professionals’ perspectives on professional support provided through a potential mobile application","authors":"Cecilia Moberg, Åke Grundberg, H. Konradsen, A. P. Kallström, A. Leung, Z. Kabir","doi":"10.1177/14713012211065313","DOIUrl":"https://doi.org/10.1177/14713012211065313","url":null,"abstract":"Background A majority of persons with dementia in Sweden live in their own homes and are often cared for by family members. Caring for a family member may be a positive experience. It may, however, also be a negative experience as symptoms like disturbing behavior and delusions may be difficult to encounter. The burden of being a family caregiver has been shown to affect the caregivers’ quality of life. Objective To explore stakeholders’ perspectives on a potential mobile application through which family caregivers could be supported by healthcare professionals in caring for a person with dementia living at home. Method Eight individual interviews with family caregivers and a focus group with eight healthcare professionals specialized in dementia care were analyzed using content analysis method. Results The findings suggest that a mobile application can support family caregivers to meet their own needs in terms of finding structure in everyday life, how to get information and support in their own pace, and how to care for themselves. The findings also suggest the necessity of accessing relevant contact networks to be supported in the ability to care for a family member with dementia. Conclusion Healthcare and social services mediated support provided through user-friendly mobile application has the potential to support family caregivers both in taking care of a person with dementia and caring for themselves. Moreover, it is important that the information provided to family caregivers is personalized according to the needs of the family caregivers as the family member’s dementia advances.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1120 - 1134"},"PeriodicalIF":2.4,"publicationDate":"2022-03-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43344277","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 : 2022-03-08DOI: 10.1177/14713012211057414
J. Cartwright, K. Roberts, E. Oliver, M. Bennett, A. Whitworth
Purpose This study examined the impact of a Montessori mealtime intervention for people living with dementia to support the mealtime experience of residents and mealtime care practices of staff in a memory support unit. The mealtime intervention was part of a broader culture change project. Method An observational research design was used to evaluate changes in the mealtime experience and care practices across three time points (baseline, post-implementation, maintenance), spanning 30 months. Five video recordings of the lunch time service (range: 19–32 min) were analysed. The coding protocol comprised pre-determined indicators related to accepted dimensions of person-centred care. Resident and staff behaviours were quantified across four categories: providing choice and preferences, promoting the social side of eating, supporting independence and showing respect towards residents. Staff behaviours that reflected personal enhancing actions and personal detractors were also coded during each mealtime service. Results A significant increase in staff providing residents with the opportunity for choice and a subsequent significant increase in residents demonstrating choice behaviours was evident. Staff and residents both significantly increased their interactional behaviours, with greater social interaction between staff and residents. Staff further demonstrated greater support for mealtime independence that reached and maintained significance during the final two sampling points. Significant gains observed post implementation were largely maintained and, on specific measures, further increased over time. A significant increase in staff use of personal enhancing actions during mealtime care was also evident. Variability in individual staff and resident behaviour highlighted the complexity of mealtime care and culture change processes. Implications The study provides novel evidence to support the use of a Montessori mealtime intervention to achieve more person-centred mealtime care, and which resulted in a more respectful, enabling and social dining experience. Clinical implications and direction for future research are presented to build on these findings.
{"title":"Montessori mealtimes for dementia: A pathway to person-centred care","authors":"J. Cartwright, K. Roberts, E. Oliver, M. Bennett, A. Whitworth","doi":"10.1177/14713012211057414","DOIUrl":"https://doi.org/10.1177/14713012211057414","url":null,"abstract":"Purpose This study examined the impact of a Montessori mealtime intervention for people living with dementia to support the mealtime experience of residents and mealtime care practices of staff in a memory support unit. The mealtime intervention was part of a broader culture change project. Method An observational research design was used to evaluate changes in the mealtime experience and care practices across three time points (baseline, post-implementation, maintenance), spanning 30 months. Five video recordings of the lunch time service (range: 19–32 min) were analysed. The coding protocol comprised pre-determined indicators related to accepted dimensions of person-centred care. Resident and staff behaviours were quantified across four categories: providing choice and preferences, promoting the social side of eating, supporting independence and showing respect towards residents. Staff behaviours that reflected personal enhancing actions and personal detractors were also coded during each mealtime service. Results A significant increase in staff providing residents with the opportunity for choice and a subsequent significant increase in residents demonstrating choice behaviours was evident. Staff and residents both significantly increased their interactional behaviours, with greater social interaction between staff and residents. Staff further demonstrated greater support for mealtime independence that reached and maintained significance during the final two sampling points. Significant gains observed post implementation were largely maintained and, on specific measures, further increased over time. A significant increase in staff use of personal enhancing actions during mealtime care was also evident. Variability in individual staff and resident behaviour highlighted the complexity of mealtime care and culture change processes. Implications The study provides novel evidence to support the use of a Montessori mealtime intervention to achieve more person-centred mealtime care, and which resulted in a more respectful, enabling and social dining experience. Clinical implications and direction for future research are presented to build on these findings.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1098 - 1119"},"PeriodicalIF":2.4,"publicationDate":"2022-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43591881","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 : 2022-03-01DOI: 10.1177/14713012211067027
L. Hayden, C. 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":"L. Hayden, C. Passarelli, Susan E Shepley, William Tigno","doi":"10.1177/14713012211067027","DOIUrl":"https://doi.org/10.1177/14713012211067027","url":null,"abstract":"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).","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1416 - 1448"},"PeriodicalIF":2.4,"publicationDate":"2022-03-01","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 : 2022-03-01DOI: 10.1177/14713012211072501
Kate de Medeiros, L. Girling, N. Berlinger
Background Because use of a study partner (proxy decision-maker) to give informed consent on behalf of someone living with Alzheimer’s disease or related dementias (ADRD) is common in nearly all clinical research, people living with ADRD who lack a study partner are regularly excluded from participation. Social research presents different opportunities and risks than clinical research. We argue that guidelines developed for the latter may be unduly restrictive for social research and, further, that the automatic exclusion of people living with ADRD presents separate ethical challenges by failing to support extant decision-making capacity and by contributing to underrepresentation in research. Purpose The study objective was to identify key components related to including cognitively vulnerable participants who lack a study partner in social research. Research design/Study sample We conducted an adaptive qualitative evidence synthesis (QES) and subsequent content analysis on 49 articles addressing capacity and research consent for potentially cognitively compromised individuals, to include people living with ADRD, who lack a study partner. Results We identified four major topic areas: defining competency, capacity, and consent; aspects of informed consent; strategies to assess comprehension of risks associated with social research; and risks versus benefits. Conclusions Based on findings, we suggest new and ethically appropriate ways to determine capacity to consent to social research, make consent processes accessible to a population experiencing cognitive challenges, and consider the risks of excluding a growing population from research that could benefit millions.
{"title":"Inclusion of people living with Alzheimer’s disease or related dementias who lack a study partner in social research: Ethical considerations from a qualitative evidence synthesis","authors":"Kate de Medeiros, L. Girling, N. Berlinger","doi":"10.1177/14713012211072501","DOIUrl":"https://doi.org/10.1177/14713012211072501","url":null,"abstract":"Background Because use of a study partner (proxy decision-maker) to give informed consent on behalf of someone living with Alzheimer’s disease or related dementias (ADRD) is common in nearly all clinical research, people living with ADRD who lack a study partner are regularly excluded from participation. Social research presents different opportunities and risks than clinical research. We argue that guidelines developed for the latter may be unduly restrictive for social research and, further, that the automatic exclusion of people living with ADRD presents separate ethical challenges by failing to support extant decision-making capacity and by contributing to underrepresentation in research. Purpose The study objective was to identify key components related to including cognitively vulnerable participants who lack a study partner in social research. Research design/Study sample We conducted an adaptive qualitative evidence synthesis (QES) and subsequent content analysis on 49 articles addressing capacity and research consent for potentially cognitively compromised individuals, to include people living with ADRD, who lack a study partner. Results We identified four major topic areas: defining competency, capacity, and consent; aspects of informed consent; strategies to assess comprehension of risks associated with social research; and risks versus benefits. Conclusions Based on findings, we suggest new and ethically appropriate ways to determine capacity to consent to social research, make consent processes accessible to a population experiencing cognitive challenges, and consider the risks of excluding a growing population from research that could benefit millions.","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"1200 - 1218"},"PeriodicalIF":2.4,"publicationDate":"2022-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46929968","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 : 2021-12-14DOI: 10.1177/14713012211062018
Lu Song, Zhanhao Jiang
{"title":"Learning from the Talk of Persons with Dementia: A Practical Guide to Interaction and Interactional Research","authors":"Lu Song, Zhanhao Jiang","doi":"10.1177/14713012211062018","DOIUrl":"https://doi.org/10.1177/14713012211062018","url":null,"abstract":"","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"723 - 725"},"PeriodicalIF":2.4,"publicationDate":"2021-12-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42903593","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 : 2021-12-10DOI: 10.1177/14713012211062013
Lillian Hung
{"title":"American Dementia: Brain Health in an Unhealthy Society","authors":"Lillian Hung","doi":"10.1177/14713012211062013","DOIUrl":"https://doi.org/10.1177/14713012211062013","url":null,"abstract":"","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"722 - 723"},"PeriodicalIF":2.4,"publicationDate":"2021-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41474313","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 : 2021-12-06DOI: 10.1177/14713012211054370
Jane M. Mullins
{"title":"Wandering the Wards: An Ethnography of Hospital Care and its Consequences for People Living with Dementia","authors":"Jane M. Mullins","doi":"10.1177/14713012211054370","DOIUrl":"https://doi.org/10.1177/14713012211054370","url":null,"abstract":"","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"595 - 597"},"PeriodicalIF":2.4,"publicationDate":"2021-12-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48043231","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 : 2021-10-08DOI: 10.1177/14713012211052709
L. Steele
{"title":"Dementia: The International Journal of Social Research and Practice Book Review","authors":"L. Steele","doi":"10.1177/14713012211052709","DOIUrl":"https://doi.org/10.1177/14713012211052709","url":null,"abstract":"","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"355 - 358"},"PeriodicalIF":2.4,"publicationDate":"2021-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48768769","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 : 2021-07-08DOI: 10.1177/14713012211031783
Adrienne Ione
{"title":"The Pocket Guide to Mouth and Dental Hygiene in Dementia Care","authors":"Adrienne Ione","doi":"10.1177/14713012211031783","DOIUrl":"https://doi.org/10.1177/14713012211031783","url":null,"abstract":"","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"21 1","pages":"353 - 354"},"PeriodicalIF":2.4,"publicationDate":"2021-07-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/14713012211031783","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42663726","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 : 2021-04-15DOI: 10.1177/14713012211011265
S. Cahill
{"title":"Using technology in dementia care","authors":"S. Cahill","doi":"10.1177/14713012211011265","DOIUrl":"https://doi.org/10.1177/14713012211011265","url":null,"abstract":"","PeriodicalId":51413,"journal":{"name":"Dementia-International Journal of Social Research and Practice","volume":"20 1","pages":"3055 - 3056"},"PeriodicalIF":2.4,"publicationDate":"2021-04-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/14713012211011265","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"65533626","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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