...synthesis, four themes were identified: varying manifestations of sexual expression and situations encountered, a spectrum of care staff's attitudes, setting boundaries in dementia care and workplace support. Managing sexual expression can be challenging for the care staff, given the complex interplay between personal beliefs, social contexts, moral dilemmas, practical barriers and the lack of clear
(Edited publisher abstract)
Long-term care (LTC) facilities, in which older adults are institutionalised, have the responsibility to address their residents' rights, privacy and comfort in expressing themselves sexually in an acceptable manner. However, many older adults have reported barriers in their sexual expression, which is often a result of the care staff's attitudes in the facilities. This review synthesis evidence from qualitative studies on the challenges faced by care staff when supporting sexual expression of older residents in LTC facilities. The systematic review and meta-synthesis is reported according to the Enhanced Transparency in Reporting the Synthesis of Qualitative Research Statement. A systematic literature search for peer-reviewed studies was conducted on PubMed, Cochrane Library, EMBASE, Scopus, Web of Science, PsycINFO, CINAHL and ProQuest Theses and Dissertations from inception until December 2020. Sandelowski and Barroso's two-step approach was used to synthesise the evidence. Seventeen qualitative studies published between 2004 and 2020 were included. This review encapsulated the experiences and challenges of 4,387 care staff whose age ranged from 18 to 69 years. Through the meta-synthesis, four themes were identified: varying manifestations of sexual expression and situations encountered, a spectrum of care staff's attitudes, setting boundaries in dementia care and workplace support. Managing sexual expression can be challenging for the care staff, given the complex interplay between personal beliefs, social contexts, moral dilemmas, practical barriers and the lack of clear policies. This review highlighted the need to equip them with knowledge, skills and confidence in managing sexuality in LTC facilities.
(Edited publisher abstract)
Subject terms:
literature reviews, sexuality, staff views, health professionals, care workers, sexual behaviour, older people, long term care, care homes, attitudes;
Dementia: the International Journal of Social Research and Practice, 21(1), 2022, pp.335-352.
Publisher:
Sage
Rationale: Supporting people to live well with dementia is an international government priority. People living with dementia experience a range of positive emotions despite the challenges associated with dementia. Further research is needed to explore how these positive experiences can be fostered to support well-being. There is empirical evidence of the benefits of gratitude in other clinical...
(Edited publisher abstract)
Rationale: Supporting people to live well with dementia is an international government priority. People living with dementia experience a range of positive emotions despite the challenges associated with dementia. Further research is needed to explore how these positive experiences can be fostered to support well-being. There is empirical evidence of the benefits of gratitude in other clinical groups, but no studies have explored how gratitude is experienced by people living with dementia. Methods: In this mixed-methods study, eight people living with dementia shared their experiences of gratitude through interviews and gratitude diaries. Qualitative data were analysed using interpretative phenomenological analysis. Quantitative data regarding diary use were analysed using descriptive statistics. Findings and Conclusions: Gratitude holds interpersonal and transpersonal meanings for people living with dementia, balanced with challenges of dementia and ageing. This study offers insight into the existence and relevance of gratitude for people living with dementia, highlighting the importance of using multiple methods in dementia research. Positive psychology interventions informed by these findings may be effective in supporting well-being for people with dementia.
(Edited publisher abstract)
Subject terms:
dementia, attitudes, psychology, emotions, wellbeing, user views;
International Journal of Geriatric Psychiatry, 36(12), 2021, pp.1891-1898.
Publisher:
Wiley
Introduction: People with Dementia (PwD)'s performance of activities of daily living (ADLs) has been associated with apathy, cognitive deficits, carers' depression and burden. However, it is not known if the carers' management style affects ADL performance, particularly alongside PwD's cognitive deficits and apathy. Thus, the aim of this study was to explore the contribution of intrinsic...
(Edited publisher abstract)
Introduction: People with Dementia (PwD)'s performance of activities of daily living (ADLs) has been associated with apathy, cognitive deficits, carers' depression and burden. However, it is not known if the carers' management style affects ADL performance, particularly alongside PwD's cognitive deficits and apathy. Thus, the aim of this study was to explore the contribution of intrinsic (cognition, apathy) and extrinsic (carer management styles) dementia factors to ADL performance. Methods: PwD (n = 143) were assessed on global cognition (ACE-III); apathy (CBI-R); ADLs (Disability Assessment for Dementia-DAD). Carers' (n = 143) criticism, encouragement and active-management styles were assessed with the Dementia Management Strategy Scale (DMSS). Multiple linear regression analysis investigated contributions of carer styles, cognition, apathy (independent variables) on ADLs (dependent variable). Results: The best model explaining the variance of the DAD scores included cognition (β = 0.413, t(142) = 4.463, p = 0.001), apathy (β = –0.365, t(142) = –5.556, p = 0.001), carer criticism (β = –0.326, t(142) = –2.479, p = 0.014) and carer encouragement styles (β = 0.402, t(142) = 2.941, p = 0.004) accounting for 40% of the variance of the DAD scores. Conclusions: This novel study demonstrated that PwD's level of apathy and the carer's use of criticism negatively affected ADL performance while PwD's cognitive abilities and carer encouragement style improved ADL performance. These findings have critical implications for the development of novel multi-component non-pharmacological interventions to maintain function and delay disease progression in dementia, as well as direct relevance to current carers and families.
(Edited publisher abstract)
Subject terms:
activities of daily living, dementia, carers, cognitive impairment, attitudes;
Dementia: the International Journal of Social Research and Practice, 20(5), 2021, pp.1729-1744.
Publisher:
Sage
The prevalence of dementia in Singapore is on the rise. Due to the negative perceptions associated with the condition, persons with dementia and their care partners face an increased risk of social isolation and loneliness. One objective of the Arts and Dementia programme offered by the Alzheimer’s Disease Association is to increase inclusivity of persons with dementia in the community...
(Edited publisher abstract)
The prevalence of dementia in Singapore is on the rise. Due to the negative perceptions associated with the condition, persons with dementia and their care partners face an increased risk of social isolation and loneliness. One objective of the Arts and Dementia programme offered by the Alzheimer’s Disease Association is to increase inclusivity of persons with dementia in the community. To investigate the impact of the programme on perceptions towards dementia, a mixed-method approach involving 75 artists and volunteers was conducted. Findings from the Approaches to Dementia Questionnaire revealed that participants involved in the programme had significantly more positive perceptions than new volunteers. A thematic analysis was conducted on the focus group discussions and four themes were identified: (1) meaningful and rewarding interactions, (2) focus on abilities, (3) learning process and (4) more can be done. These findings suggest that meaningful experiences during the programme may be a driving force behind positive perceptions towards dementia.
(Edited publisher abstract)
Objectives The aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training. Design Cross-sectional survey study. Data collection occurred in 2017. Settings Health and social care...
(Edited publisher abstract)
Objectives The aim of this study was to establish the impact of dementia education and training on the knowledge, attitudes and confidence of health and social care staff. The study also aimed to identify the most effective features (content and pedagogical) of dementia education and training. Design Cross-sectional survey study. Data collection occurred in 2017. Settings Health and social care staff in the UK including acute care, mental health community care trusts, primary care and care homes. Participants All health and social care staff who had completed dementia education and training meeting the minimal standards as set by Health Education England, within the past 5 years were invited to participate in an online survey. A total of 668 health and social care staff provided informed consent and completed an online survey, and responses from 553 participants were included in this study. The majority of the respondents were of white British ethnicity (94.4%) and identified as women (88.4%). Outcomes Knowledge, attitude and confidence of health and social care staff. Results Hierarchical multiple regression analysis was conducted. Staff characteristics, education and training content variables and pedagogical factors were found to account for 29% of variance in staff confidence (F=4.13, p<0.001), 22% of variance in attitude (knowledge) (F=3.80, p<001), 18% of the variance in staff knowledge (F=2.77, p<0.01) and 14% of variance in staff comfort (attitude) (F=2.11, p<0.01). Conclusion The results suggest that dementia education and training has limited impact on health and social care staff learning outcomes. While training content variables were important when attempting to improve staff knowledge, more consideration should be given to pedagogical factors when training is aiming to improve staff attitude and confidence.
(Edited publisher abstract)
Subject terms:
outcomes, evaluation, dementia, training, skills, social care staff, attitudes, education, health professionals;
Dementia: the International Journal of Social Research and Practice, 20(6), 2021, pp.1940-1957.
Publisher:
Sage
Background: What it means to live with dementia is changing. Autonomy, independence and continued community involvement are now recognised goals. As a result, new initiatives are required to support people with dementia to sustain their quality of life, update community understanding and reflect resultant change in community attitudes. Measuring the impact of such initiatives can help determine...
(Edited publisher abstract)
Background: What it means to live with dementia is changing. Autonomy, independence and continued community involvement are now recognised goals. As a result, new initiatives are required to support people with dementia to sustain their quality of life, update community understanding and reflect resultant change in community attitudes. Measuring the impact of such initiatives can help determine the extent of their success, inform needs for further intervention and, ultimately, shape policy. Objective: To discover – or, if this could not be achieved, develop – a questionnaire measuring community attitudes towards people with dementia reflecting these newly recognised goals in terms of both content and expression. Methods: A four-stage approach was used in this research: a scoping review of the literature, questionnaire development and expert review, questionnaire piloting, including with people living with dementia and their families, and preliminary psychometric testing. Results: The review failed to retrieve a suitable existing questionnaire. A ten-item questionnaire, the Dementia Community Attitudes Questionnaire was developed, content validity was established by expert review and piloting led to refinements. Exploratory factor analysis (N = 92) generated an interpretable three-factor solution. Cronbach’s alpha coefficient for Factor 1, Engagement, was good (0.855); for Factor 2, Challenges, and Factor 3, Decision-Making, reliability was acceptable (0.785 and 0.709, respectively). Conclusion: Supporting people with dementia to sustain their quality of life requires new initiatives and suitable measures to evaluate their impact. The Dementia Community Attitudes Questionnaire was developed with input from people with dementia, their families, and relevant experts. Items reflect current opportunities for people with dementia to retain their independence, autonomy and community engagement for as long as possible. Following further psychometric testing, this new questionnaire may be useful to evaluate such initiatives.
(Edited publisher abstract)
Subject terms:
dementia, attitudes, instruments, questionnaires, communities, quality of life;
Research in Nursing and Health, early cite 24 August 2021,
Publisher:
Wiley
Given the increasing prevalence of people with dementia in long-term care, various educational interventions have been developed to enhance the dementia care competence of healthcare providers. The study aim was to appraise the evidence of the effects of dementia care educational programs on improving the preparedness of nursing home staff. Articles on dementia care education interventions...
(Edited publisher abstract)
Given the increasing prevalence of people with dementia in long-term care, various educational interventions have been developed to enhance the dementia care competence of healthcare providers. The study aim was to appraise the evidence of the effects of dementia care educational programs on improving the preparedness of nursing home staff. Articles on dementia care education interventions for nursing home staff were searched from eight databases. The primary outcomes were staff knowledge, attitude, competence, and sense of competence or self-efficacy related to dementia. The secondary outcomes were psychological outcomes, including burnout, caregiving stress, well-being, and job satisfaction. The quality of evidence was appraised using the Joanna Briggs Institute Critical Appraisal tool. Out of the 3269 articles identified, 19 randomized controlled trials comprising 3947 participants from eight countries were included. The methodological quality of included studies was fair. A significant improvement in staff knowledge regarding dementia was reported. The intervention effects on attitudes and competence were insignificant, and the effects on the sense of competence or self-efficacy related to dementia care were inconsistent. The effects on psychological outcomes seem limited because few significant changes were found. Multiple teaching methods, peer support, qualified trainers, and post-training support were effective components in designing the educational interventions. However, given the variations in content and dose and the methodological limitations of the included studies, the effects of educational programs were inconclusive. The findings highlight the necessity of high-quality studies on dementia-care educational interventions, especially in other cultures than Western countries, such as in Asia.
(Edited publisher abstract)
Health and Social Care in the Community, 29(5), 2021, pp.1566-1583.
Publisher:
Wiley
Rethink Respite’ was a prospective, naturalistic cohort study conducted in the Illawarra-Shoalhaven (NSW, Australia) to improve knowledge, attitudes and uptake of respite strategies in carers of people with dementia. A convenience sample of n = 70 carers were recruited in 2014–15 to establish a baseline for knowledge, attitudes and use of respite for a cohort of carers in the region. Carer
(Edited publisher abstract)
Rethink Respite’ was a prospective, naturalistic cohort study conducted in the Illawarra-Shoalhaven (NSW, Australia) to improve knowledge, attitudes and uptake of respite strategies in carers of people with dementia. A convenience sample of n = 70 carers were recruited in 2014–15 to establish a baseline for knowledge, attitudes and use of respite for a cohort of carers in the region. Carer perceived need for respite, burden and self-efficacy were also assessed. A co-designed multi-component community-based intervention was subsequently rolled at in the region from 2015 to 2016. The intervention supported: awareness raising media; carer education sessions; access to web and print respite information resources; and an option to participate in a tailored one-on-one in-home coaching program. At program completion, a follow-up survey was administered to the cohort, with n = 44/70 responding. All n = 44 respondents reported participation in and exposure to ‘Rethink Respite’ media, information and education during the intervention period. Eighteen of the 44 also self-selected to receive the active tailored coaching support. At follow-up, few positive results were reported on the assessed carer variables for the cohort over time. However, post hoc sub-group analyses found those who also self-selected to receive active support (provided through coaching) (n = 18), showed improvements to their respite knowledge, attitudes and self-efficacy (p < .05). Intention to use respite, and levels of personal gain from caring in this sub-group also increased (p < .05). In contrast, carers who only participated in the informational/educational aspects of the program (and did not self-select to the respite coaching), experienced negative changes over time to their respite beliefs and ‘role captivity’. Overall, this pilot study suggests that passive respite information and educational strategies are insufficient, without more active supports (tailored respite coaching) to address observed carer decline over time. Future research should seek to replicate these results using a larger sample and an experimental design.
(Edited publisher abstract)
Subject terms:
evaluation, short break care, dementia, carers, service uptake, attitudes, intervention;
This study aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers’ understanding of, and attitudes to dementia, we explored how carers’ cultural identities and values influenced...
(Edited publisher abstract)
This study aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers’ understanding of, and attitudes to dementia, we explored how carers’ cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services.Research Design and Methods: We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed. Results: We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks. Discussion and Implications: Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.
(Edited publisher abstract)
Subject terms:
dementia, attitudes, cultural identity, carers, informal care, social networks, Asian people;
By shedding light on the reasons why persons with a migration background (PwM) may take up the role of family caregiver of a person with dementia, and how this relates to gender norms, the researchers aim to elucidate cultural and social dynamics that impede care sharing. Research Design and Methods: A qualitative study of 12 PwM who provide care, or have recently provided care, for a family...
(Edited publisher abstract)
By shedding light on the reasons why persons with a migration background (PwM) may take up the role of family caregiver of a person with dementia, and how this relates to gender norms, the researchers aim to elucidate cultural and social dynamics that impede care sharing. Research Design and Methods: A qualitative study of 12 PwM who provide care, or have recently provided care, for a family member with dementia was conducted through semi-structured interviews. Identified themes and patterns were analyzed with the help of Hochschild’s interpretive framework of framing and feeling rules. Findings: the researchers' findings illuminate how motivations to provide care are framed through two moral framing rules, reciprocal love and filial responsibility, and how these framing rules are accompanied by the feeling rule of moral superiority over non-caregiving family members. They show how shared dementia care is impeded though these moral framing and feeling rules, and how gender norms impact on an unequal distribution of care-tasks. Implications: Healthcare practitioners should identify the moral dialectics of caregiving. This means that, on the one hand, they should be aware that moral framing rules may pressure women into exclusive caregiving, and that this can lead to health problems in the long term. On the other, healthcare practitioners should recognize that providing care can create a deep sense of pride and moral superiority. Therefore, showing acknowledgement of the caregiver contribution is a crucial step in creating trust between the caregiver and healthcare practitioner. Furthermore, asking for support should be normalized. Governmental advertisements on care–support can achieve this.
(Edited publisher abstract)
Subject terms:
dementia, carers, cultural identity, attitudes, immigrants;