General Practitioners’ perceptions of the stigma of dementia and the role of reciprocity

YesA qualitative exploration of the stigma of dementia reported that GPs described lack of reciprocity as one way in which people with dementia are perceived within society. This was closely linked to their perception of dementia as a stigma. In this paper, we explore whether GPs perceive people with dementia as lacking reciprocity and, so, if this is linked with societal opinions about dementia as a stigma. The implications of both perceptions of people with dementia failing to reciprocate and of stigma for timely diagnosis are explored. GPs’ perceptions of societal views of people with dementia included a perception of a lack of reciprocity. Specifically, an absence of reciprocity was linked with; failing to respond to human contact, the absence of an appropriate return on social investment and failing to contribute to, or being a burden to, society. GPs reported a link between societal perceptions of lack of reciprocity and stereotypes about advanced dementia, difficulties communicating with people with dementia and lack of opportunities for people with dementia to reciprocate. GPs occupy a key position, they can challenge stereotypes and, with support and targeted training about communicating with people living with dementia, can emphasise the ways in which people with dementia can communicate, thereby enhancing their potential to reciprocate. Such changes have implications for improved care and quality of life through the continued maintenance of social inclusion and perceptions of personhood.non

Ethical implications of the perception and portrayal of dementia

yesThe way we perceive and portray dementia has implications for how we act towards people with dementia and how we address the issue of dementia within society. As a multi-disciplinary working group, established within the framework of the European Dementia Ethics Network of Alzheimer Europe, we aimed to describe the different ways that people with dementia are perceived and portrayed within society and to consider the moral implications of this. In the current paper, we address perceptions of dementia as reflected in explanatory models of its cause and nature, descriptions of characteristics of people with dementia, the use of language, media portrayals and the views of people living with dementia. Academics and professionals could use this exploration to reflect on their behaviour and their use of language regarding people with dementiaThe taskforce’s work arises from the 2013 Work Plan of Alzheimer Europe, which received funding from the European Union in the framework of the Health Programme

The Effects of a Dementia Simulation Experience on Attitudes Towards People with Dementia

Introduction: The neurodegenerative effects of dementia resulting in cognitive and behavioral impairments is plausibly one of the reasons for a societal stigma towards individuals with dementia. Societal stigmas are associated with decreased life satisfaction, depressive symptoms, and decreased psychological well-being for stigmatized individuals. In an effort to improve attitudes towards individuals with dementia, this study utilized a dementia simulation to measure attitudinal changes after a dementia simulation. Methods: There were 33 participants in this study (13 male and 20 female) between the ages of 18 and 25. Participants completed a Dementia Attitudes Scale (DAS) survey, and then they dressed in a set of props that mimicked the effects of aging and dementia. Participants were then instructed to complete a series of tasks common to the routine of an older adult with dementia. Upon completion, participants were instructed to remove the props and complete the DAS survey again. Results: Attitudes improved significantly from pre- to post- simulation (102.5 to 108.1) by 5.54% through improvements in social comfort and dementia knowledge. Discussion: Because dementia simulations have the ability to improve attitudes towards dementia, thus destigmatizing individuals with dementia, dementia simulations should be made readily available for the general public in an effort to improve the life satisfaction and psychological well-being of individuals with dementia

Neighborhood Social Cohesion and Dementia-Related Stigma Among Mothers of Adolescents in the Pre- and Current COVID-19 Period: An Observational Study Using Population-Based Cohort Data

BACKGROUND: Middle-aged adults may be the ideal target group for dementia-related stigma reduction interventions to encourage the utilization of services among those who may become family caregivers. Neighborhood social cohesion may diminish dementia-related stigma, particularly in terms of perceived public attitudes. The COVID-19 pandemic can further negatively impact perceived public stigma. OBJECTIVE: To investigate the association between neighborhood social cohesion and dementia-related stigma during the pre- and current COVID-19 period. METHODS: We employed a cross-sectional design using data from a large population-based cohort, the Tokyo Teen Cohort, in Japan. Overall, 2,469 mothers of 16-year-old adolescents self-completed a questionnaire comprising nine dementia-related stigma questions evaluating perceived public and personal attitudes. Neighborhood social cohesion was assessed using a five-item instrument. The participants were divided into two groups according to the time of assessment: prior to the pandemic’s onset (February 2019–March 2020) and during the pandemic (April 2020–July 2021). A multiple regression analysis of stigma was performed using neighborhood social cohesion as an independent variable, and caring experience, age, educational level, and working status as covariates. RESULTS: Personal and perceived public stigma were significantly lower in participants who perceived greater neighborhood social cohesion. However, level of personal and perceived public stigma did not differ between pre- and during the pandemic period. CONCLUSIONS: Neighborhood social cohesion may be a modifiable factor for dementia-related stigma. A localized intervention to enhance social cohesion in the neighborhood community would promote the utilization of services among those who may become family caregivers

The challenges of safety and community integration for vulnerable individuals

Although community inclusion brings a number of advantages for vulnerable individuals, it can also entail a range of challenges, and draws in issues of safety and security. This qualitative psychological study, therefore, aimed to explore the challenges being faced by two groups of vulnerable individuals: those with intellectual disabilities and dementia, and how these could be addressed in order to establish a community that is safe and welcoming for all. Interviews and focus groups were conducted with a range of community stakeholders—for instance, local businesses, residents, and individuals with intellectual disabilities, dementia and their carers—and data was thematically analysed to explore the issue of inclusion and participation particularly in relation to stigma and prejudice, self-worth, social isolation and feeling safe. As well as highlighting practical issues regarding inclusion and support, the work emphasised the psychological dimension, linking to a multi-faceted conception of community participation. While significant work is already addressing issues of risk and safety for vulnerable populations (such as “Keep Safe” schemes), the work described here leads to an alternative conceptualization, tied to notions of kindness in communities with a view to crafting communities capable of safely welcoming a wider variety of marginalized groups

Technology-based non-pharmacological interventions for stress and distress in dementia care: a systematic review; and, A mixed-method multiple-baseline single-case study exploring the impact of the Tovertafel (Magic Table) on factors impacting staff burnout in an acute dementia care hospital ward

Technology-based non-pharmacological interventions are a fast-growing area of dementia care and are being applied in a variety of care settings. Due to the readily available nature of many technology-based interventions which often have high face validity and are perceived to have very minimal side effects, research can lag behind clinical applications. Current research suggests that these interventions may be beneficial people to with dementia, but the extent of their effectiveness in specific aspects of dementia care and the impact on the wider care system is still being determined. A systematic review of the literature was conducted to review the effectiveness of technology based non-pharmacological interventions on stress and distress in dementia care settings. The term ‘stress and distress’ encompasses behaviour, affect, perception or thought disturbance symptoms in dementia, such as depression, anxiety, agitation, poor sleep and high levels of distress. While there is evidence that technology-based non-pharmacological interventions can be effective in reducing for stress and distress for people with dementia, the findings of the studies included in the review are mixed, meaning that there is not yet a clear indication of which, if any interventions are most effective. These results are discussed in relation to findings from other studies, with recommendations for future research and clinical applications. Current research on technology-based non-pharmacological interventions in dementia care often fails to consider staff as a significant factor in the application of interventions. A mixed method multiple-baseline single-case study methodology was used to assess the impact of the Tovertafel, a technology-based non-pharmacological intervention, on factors related to staff burnout in an acute dementia care ward. The Tovertafel (meaning Magic Table in Dutch) is a digital projection device which provides an interactive and playful recreation activity for people with dementia. The results suggested that the majority of participants demonstrated improvement in factors related to burnout, and a meta-analysis suggested small to medium effect sizes across participants. The thematic analysis of a qualitative staff experience questionnaire established three themes: patient’s positive engagement and response to the Tovertafel; benefits to staff from using the Tovertafel; and opportunities to enhance care with no changes to the normal workload. These results suggest that the Tovertafel may have the potential to improve staff outcomes in relation to burnout factors. Potential directions for future research are discussed

"This Man with Dementia" - 'Othering' the Person with Dementia in the Court of Protection

In recent years, dementia has been subjected to an increasing ethical, legal, and political gaze. This article analyses how the Court of Protection considers the perspective of the person with dementia when making best interests decisions on their behalf under the Mental Capacity Act 2005. The article draws upon feminist and disability literature to highlight how the Court has, on occasions, ‘othered’ the person with dementia during the process of making best interests decisions. This is despite law and policy increasingly emphasising that the views of the person who lacks capacity should be central to any best interests decision, as well as emphasising the importance of de-stigmatisation of cognitive impairments, such as dementia. Finally, using examples from recent cases, it is argued that by adopting an intersubjective approach, and by recognising and exploring the complexity of the relationships that the person with dementia has, the Court can go some way to avoiding the process of ‘othering’

Employer Responses to Dementia in the Workplace in Scotland

The reported study investigated how Scottish-based employers from different sectors respond to staff with dementia. Dementia is, and will increasingly be, a workplace issue as populations’ age, working lives extend and there is better recognition of early onset dementias and earlier diagnoses. To date, however, there is a little research on the workplace experiences of people with dementia and the policies, practices and attitudes of their employers. The requirement to support employees with dementia in the workplace has, amongst other things, a solid legal and human rights foundation. Dementia may be considered a disability under the Equality Act 2010 requiring employers to therefore make ‘reasonable adjustments’. The United Nations Convention on the Rights of Persons with Disabilities 2006, in turn, reinforces this.Using mixed-methods to interrogate workplace policies, practices and attitudes towards employees with dementia the study sought to: •discover the extent to which employers are currently meeting their legal, equality and human rights duties; •identify examples of good practice; and •make recommendations for possible adaptions so that legal and human rights standards can be met

Employer Responses to Dementia in the Workplace in Scotland

The reported study investigated how Scottish-based employers from different sectors respond to staff with dementia. Dementia is, and will increasingly be, a workplace issue as populations’ age, working lives extend and there is better recognition of early onset dementias and earlier diagnoses. To date, however, there is a little research on the workplace experiences of people with dementia and the policies, practices and attitudes of their employers. The requirement to support employees with dementia in the workplace has, amongst other things, a solid legal and human rights foundation. Dementia may be considered a disability under the Equality Act 2010 requiring employers to therefore make ‘reasonable adjustments’. The United Nations Convention on the Rights of Persons with Disabilities 2006, in turn, reinforces this.Using mixed-methods to interrogate workplace policies, practices and attitudes towards employees with dementia the study sought to: •discover the extent to which employers are currently meeting their legal, equality and human rights duties; •identify examples of good practice; and •make recommendations for possible adaptions so that legal and human rights standards can be met