scholarly journals Dyads in Dementia Care: An International Perspective on Research Challenges and Opportunities

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 757-757
Author(s):  
Marie Boltz ◽  
Karin Wolf-Ostermann ◽  
Katie Maslow
Keyword(s):  
Daily Practice ◽  
Well Being ◽  
International Perspective ◽  
Dementia Care ◽  
Research Approach ◽  
Ethical Challenges ◽  
Research Strategies ◽  
Policy And Practice ◽  
Challenges And Opportunities ◽  
Informal Carers

Abstract Dementia poses a societal challenge that is life-changing not only for persons with dementia (PWD) but also for family members and friends (informal carers) directly involved in the care arrangement. Informal carers (IC) have typically poorer outcomes in terms of well-being, quality of life (QoL), health status, and use of health care resources. Dyads of PWD and IC living with dementia are characterized by strong reciprocal relationships and complex living contexts. Therefore, research should investigate home based dementia caregiving from a dyadic perspective to yield interventions that support the PWD, the IC, and the unit as a whole. However, it is an ongoing challenge to investigate dyadic needs and preferences in daily practice and develop effective interventions. Challenges are related to incomplete understanding of dyadic characteristics, attitudes and beliefs within the dyad, as well as how to adapt research approach to engage and retain the dyad in research. This international symposium will therefore address these issues. The first presentation will describe a typology of dementia care dyad characteristics and needs in Germany. The second presentation will examine the challenges and opportunities associated with recruiting and retaining dementia dyads. The third presentation will explore ethical challenges posed in communication with dyads and possible solutions for the researcher. The final presentation reports on the Meeting Centre Support Program as an example of an effective psychosocial intervention employing research strategies that transcend cultural barriers. Our discussant, Katie Maslow, will synthesize the presentations and lead a discussion of future directions for policy and practice.

scholarly journals Dementia Care: Intersecting Informal Family Care and Formal Care Systems

2014 ◽  
Vol 2014 ◽  
pp. 1-9 ◽  
Author(s):  
Prabhjot Singh ◽  
Rafat Hussain ◽  
Adeel Khan ◽  
Lyn Irwin ◽  
Roslyn Foskey
Keyword(s):  
Family Member ◽  
Family Care ◽  
Well Being ◽  
Dementia Care ◽  
Formal Care ◽  
Policy And Practice ◽  
People With Dementia ◽  
Physical Burden ◽  
Formal Services ◽  
Informal Carers

Dementia is one of the major causes of disability and dependence amongst older people and previous research has highlighted how the well-being of people with dementia is inherently connected to the quality of their relationships with their informal carers. In turn, these carers can experience significant levels of emotional stress and physical burden from the demands of caring for a family member with dementia, yet their uptake of formal services tends to be lower than in other conditions related to ageing. This paper is based on a qualitative study undertaken in the Australian state of Queensland and explores issues of access to and use of formal services in dementia care from the perspective of the informal family carers. It identifies three critical points at which changes in policy and practice in the formal care system could improve the capability of informal carers to continue to care for their family member with dementia: when symptoms first become apparent and a diagnosis is sought; when the condition of the person with dementia changes resulting in a change to their support needs; and when the burden of informal care being experienced by the carer is so great that some form of transition appears to be immanent in the care arrangement.

scholarly journals Lessons From Disruption: A New Normal for Families and Care Partners

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 291-292
Author(s):  
Beth Fields
Keyword(s):  
Older Adults ◽  
Family Members ◽  
Well Being ◽  
Community Dwelling ◽  
Psychosocial Needs ◽  
Policy And Practice ◽  
New Normal ◽  
Care Partners ◽  
Challenges And Opportunities ◽  
Support Family

Abstract COVID-19 has forced community-dwelling older adults to rely on family members and care partners more than ever before for support. Often at the expense of their own health and well-being, family members and care partners help older adults manage physical and psychosocial needs, navigate a complex, ever-changing healthcare system, and follow public health guidelines. Given the increasing demands and poor outcomes, there is no better time than now to develop policies and practices that better recognize and support family members and care partners of older adults. To inform policy and practice development, this symposium will present findings from a literature review of peer-reviewed studies published from 2019 through 2021 that identifies and addresses challenges and opportunities related to caregiving for an older adult in a pandemic. The experiences of the past year demonstrate that the new normal needs to recognize and support family members and care partners.

Ethical Considerations Associated with the Usage of ICT “Smart Homes” for Elderly Dementia Patients (EPwD) in the UK

2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 131-132
Author(s):  
Gia Mukherjee ◽  
◽  
Asim Chatterjee ◽  
◽  
Keyword(s):  
Technology Use ◽  
Risk Mitigation ◽  
Ambient Assisted Living ◽  
Smart Homes ◽  
Well Being ◽  
Dementia Care ◽  
Ethical Challenges ◽  
Care Needs ◽  
Smart House ◽  
The Uk

"Dementia encompasses a family of chronic-diseases that gradually causes permanent damage to the brain tissue. Its onset disproportionately affects elderly-individuals’ cognitive and motor abilities. Numerous studies have shown that continuous monitorization of the physiological parameters and activities of EPwD is of utmost necessity. It is commonly accepted that utilisation of Smart-Homes as an instance of Ambient-Assisted-Living technology can facilitate the care of EPwDs and improve the quality of their well-being. Smart-homes allow EPwD to lead independent and active lives. Outfitted with environmental and physiological sensors that allow patients to receive continuous, non-invasive, and seamless healthcare-service while staying in their convenient-home-environments, Smart-Homes can facilitate (1) remote monitoring of elderly patients’ homes and (2) efficient communication with traditional healthcare facilities. Significant ethical barriers impede the widespread adoption of Smart-House technology. Many Smart-Houses pose threats to the privacy, safety, and autonomy of elderly-residents. Constant dependence on ICT technology may also undermine EPwDs’ independence and leave them vulnerable to feelings of isolation and hopelessness. Acknowledgment and minimization of these ethical challenges are instrumental to boosting acceptance of Smart-House technology and addressing the primary-care needs of EPwDs. Although most existing Smart-House platforms fail to accommodate the specific requirements for elderly dementia care, few notable alternatives have emerged within the UK. This paper will review the effectiveness of Smart-Home technology on current dementia-care platforms in the UK, analyses significant ethical challenges associated with Smart-House technology use, and outline appropriate risk-mitigation proposals. All recommendations will be made in congruence with a public-health prevention-model. "

Challenges and opportunities for the affective sciences.

2018 ◽  
Author(s):  
Andrew S. Fox ◽  
Regina Lapate ◽  
Alexander J. Shackman ◽  
Richard J Davidson
Keyword(s):  
Well Being ◽  
Human Condition ◽  
Emotional States ◽  
Quarter Century ◽  
Core Feature ◽  
Challenges And Opportunities ◽  
The Mind ◽  
The Impact ◽  
Improved Methods ◽  
Health And Well Being

Emotion is a core feature of the human condition, with profound consequences for health, wealth, and wellbeing. Over the past quarter-century, improved methods for manipulating and measuring different features of emotion have yielded steady advances in our scientific understanding emotional states, traits, and disorders. Yet, it is clear that most of the work remains undone. Here, we highlight key challenges facing the field of affective sciences. Addressing these challenges will provide critical opportunities not just for understanding the mind, but also for increasing the impact of the affective sciences on public health and well-being.

Revolutionizing Mental Health with Social Media

2019 ◽  
pp. 259-284
Author(s):  
Munmun De Choudhury
Keyword(s):  
Social Media ◽  
Well Being ◽  
Linguistic Expression ◽  
Ethical Considerations ◽  
Self Disclosure ◽  
Vulnerable Communities ◽  
Tailored Interventions ◽  
Challenges And Opportunities ◽  
Social Media Platforms

Social media platforms have emerged as rich repositories of information relating to people’s activities, emotions, and linguistic expression. This chapter highlights how these data may be harnessed to reason about human mental and psychological well-being. It also discusses the emergent role of social media in providing a platform of self-disclosure and support to distressed and vulnerable communities. It reflects on how this new line of research bears potential for informing the design of timely and tailored interventions, provisions for improved personal and societal well-being assessment, privacy and ethical considerations, and the challenges and opportunities of the increasing ubiquity of social media.

scholarly journals Participation in community gardening: Sowing the seeds of well-being

2021 ◽  
pp. 000841742199438
Author(s):  
Melinda J. Suto ◽  
Shelagh Smith ◽  
Natasha Damiano ◽  
Shurli Channe
Keyword(s):  
Mental Health ◽  
Social Connectedness ◽  
Community Gardens ◽  
Well Being ◽  
Supported Housing ◽  
Research Approach ◽  
Subjective Well Being ◽  
Health Issues ◽  
Community Gardening ◽  
Mental Health Issues

Background. Sustaining well-being challenges people with serious mental health issues. Community gardening is an occupation used to promote clients’ well-being, yet there is limited evidence to support this intervention. Purpose. This paper examines how facilitated community gardening programs changed the subjective well-being and social connectedness of people living with mental health issues. Method. A community-based participatory research approach and qualitative methods were used with 23 adults living in supported housing and participating in supported community gardening programs. A constructivist approach guided inductive data analysis. Findings. Participation in community gardening programs enhanced well-being through welcoming places, a sense of belonging, and developing positive feelings through doing. The connection to living things and responsibility for plants grounded participants in the present and offered a unique venue for learning about gardening and themselves. Implications. Practitioners and service-users should collaborate to develop leadership, programs, places, and processes within community gardens to enhance well-being.

scholarly journals Researcher perspectives on challenges and opportunities in conservation physiology revealed from an online survey

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Christine L Madliger ◽  
Oliver P Love ◽  
Vivian M Nguyen ◽  
Neal R Haddaway ◽  
Steven J Cooke
Keyword(s):  
Online Survey ◽  
Stakeholder Involvement ◽  
Reference Ranges ◽  
Conservation Science ◽  
Policy And Practice ◽  
Conservation Action ◽  
Conservation Physiology ◽  
Biodiversity Crisis ◽  
Challenges And Opportunities ◽  
Multi Stakeholder

Abstract Conservation physiology represents a recently emerging arm of conservation science that applies physiological tools and techniques to understand and solve conservation issues. While a multi-disciplinary toolbox can only help to address the global biodiversity crisis, any field can face challenges while becoming established, particularly highly applied disciplines that require multi-stakeholder involvement. Gaining first-hand knowledge of the challenges that conservation physiologists are facing can help characterize the current state of the field and build a better foundation for determining how it can grow. Through an online survey of 468 scientists working at the intersection of physiology and conservation, we aimed to identify characteristics of those engaging in conservation physiology research (e.g. demographics, primary taxa of study), gauge conservation physiology’s role in contributing to on-the-ground conservation action, identify the perceived barriers to achieving success and determine how difficult any identified barriers are to overcome. Despite all participants having experience combining physiology and conservation, only one-third considered themselves to be ‘conservation physiologists’. Moreover, there was a general perception that conservation physiology does not yet regularly lead to tangible conservation success. Respondents identified the recent conceptualization of the field and the broader issue of adequately translating science into management action as the primary reasons for these deficits. Other significant barriers that respondents have faced when integrating physiology and conservation science included a lack of funding, logistical constraints (e.g. sample sizes, obtaining permits) and a lack of physiological baseline data (i.e. reference ranges of a physiological metric’s ‘normal’ or pre-environmental change levels). We identified 12 actions based on suggestions of survey participants that we anticipate will help deconstruct the barriers and continue to develop a narrative of physiology that is relevant to conservation science, policy and practice.

‘Who Ya Gonna Call …?’ Ethical and legal dilemmas in specialist children centres and district general hospitals

2021 ◽  
pp. 147775092110366
Author(s):  
Harika Avula ◽  
Mariana Dittborn ◽  
Joe Brierley
Keyword(s):  
Intensive Care ◽  
Clinical Ethics ◽  
Ethical Issues ◽  
General Setting ◽  
Daily Practice ◽  
Paediatric Intensive Care ◽  
Ethical Challenges ◽  
Legal Cases ◽  
Ethics Support ◽  
The Uk

The field of Paediatric Bioethics, or ethical issues applied to children's healthcare, is relatively new but has recently gained an increased professional and public profile. Clinical ethics support to health professionals and patients who face ethical challenges in clinical practice varies between and within institutions. Literature regarding services available to paediatricians is sparse in specialist tertiary centres and almost absent in general paediatrics. We performed a mixed-methods study using online surveys and focus groups to explore the experiences of ethical and legal dilemmas and the support structures available to (i) paediatric intensive care teams as a proxy for specialist children's centres and (ii) paediatricians working in the general setting in the UK. Our main findings illustrate the broad range of ethical and legal challenges experienced by both groups in daily practice. Ethics training and the availability of ethics support were variable in structure, processes, funding and availability, e.g., 70% of paediatric intensive care consultants reported access to formal ethics advice versus 20% general paediatricians. Overall, our findings suggest a need for ethics support and training in both settings. The broad experience reported of ethics support, where it existed, was good – though improvements were suggested. Many clinicians were concerned about their relationship with children and families experiencing a challenging ethical situation, partly as a result of high-profile recent legal cases in the media. Further research in this area would help collect a broader range of views to inform clinical ethics support's development to better support paediatric teams, children and their families.

scholarly journals Informal carer in Portugal: moving towards political recognition in Portugal

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
I Fronteira ◽  
J Simoes ◽  
G Augusto
Keyword(s):  
Informal Care ◽  
Long Term Care ◽  
Well Being ◽  
Oecd Countries ◽  
Low Fertility ◽  
Informal Carer ◽  
Term Care ◽  
System Perspective ◽  
Informal Carers

Abstract Informal care represents around 80% of all long term care provided in EU countries. Nevertheless, the needs for this type of care are expected to increase in the coming years in all OECD countries. Portugal is among the OECD countries with the highest ageing index (21.5% of the population was older than 65 years in 2017) due to high life expectancy and low fertility rates. As this demographic trend establishes, Portugal is expected to have more than 40% of the population over 65 years in 2037, and the expected prevalence of dementia is 3%, in 2050. In 2015 there were 2.1% of people over 65 receiving long-term care, representing 52% of all long-term care users. Around 38% were receiving care at home. It is estimated that 287,000 people in Portugal depend on informal carers. The agenda towards the official recognition of informal cares has been push forward in the country. Since 2015, several recommendations have been issued by the Parliament as well as legislative initiatives and a proposal for a Status of the Informal Carer is currently under discussion. We analyse the process of formulation of this policy in terms of sectors and stakeholders involved, definition and scope of informal carer, rights and obligations, role of the person being cared for, formal protection (e.g., labor, social, financial, training) and implementation. Recognition of the informal carer is a sector wide approach. One of the main features is the economic, social and labor protection mainly through reconciliation between work life and caring activities and promotion of the carer’s well being. Notwithstanding, and from a health system perspective, community health teams are to be the focal point for informal carers, supporting and providing specific training whenever needed. Despite its relevance, informal care should not be professionalized and responsibility of care should not be shifted from health services to informal carers. Key messages Needs for informal care are expected to increase in the coming years in OECD countries. Recognition of the informal carer is a sector wide approach.

Research End-User Perspectives about Using Social Work Research in Policy and Practice

2021 ◽  
Author(s):  
Clare Tilbury ◽  
Mark Hughes ◽  
Christine Bigby ◽  
Mike Fisher
Keyword(s):  
Social Work ◽  
Well Being ◽  
End Users ◽  
Research Translation ◽  
Policy And Practice ◽  
Social Work Research ◽  
Telephone Interviews ◽  
Research Engagement ◽  
Engagement Strategies ◽  
User Perspectives

Abstract Research funding and assessment initiatives that foster engagement between researchers and research end-users have been adopted by governments in many countries. They aim to orient research towards achieving measurable impacts that improve economic and social well-being beyond academia. This has long been regarded as important in social work research, as it has in many fields of applied research. This study examined research engagement and impact from the perspective of research end-users working in human services. In-person or telephone interviews were conducted with forty-three research end-users about how they used research and interacted with researchers. Content analysis was undertaken to identify engagement strategies and thematic coding was employed to examine underpinning ideas about research translation into practice. Participants were involved in many types of formal and informal research engagements. They viewed research translation as a mutual responsibility but indicated that researchers should do more to improve the utility of their research for industry. The findings highlight the iterative nature of engagement and impact and raise questions about the infrastructure for scaling up impact beyond relationships between individual researchers and their industry partners.

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