scholarly journals Agency in dementia care: systematic review and meta-ethnography

2018 ◽  
Vol 31 (5) ◽  
pp. 627-642 ◽  
Author(s):  
Alessandro Bosco ◽  
Justine Schneider ◽  
Donna Maria Coleston-Shields ◽  
Kaanthan Jawahar ◽  
Paul Higgs ◽  
...  
Keyword(s):  
Decision Making ◽  
External Support ◽  
Family Carers ◽  
Third Order ◽  
Relational Processes ◽  
People With Dementia ◽  
Health And Social Care ◽  
Behavioral Mechanisms ◽  
Person With Dementia

ABSTRACTObjectives:Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision-making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia.Design:A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioral mechanisms underlying the process of decision-making and looked at how the support of carers comes into play in making deliberate choices.Results:The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decision-making, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia.Conclusions:Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making process, and therefore which mechanisms need to be promoted or discouraged through training.

scholarly journals Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic

2021 ◽  
Vol 18 (2) ◽  
pp. 686
Author(s):  
Clarissa Giebel ◽  
Caroline Sutcliffe ◽  
Frances Darlington-Pollock ◽  
Mark A. Green ◽  
Asan Akpan ◽  
...  
Keyword(s):  
Social Care ◽  
Late Onset ◽  
Care Pathways ◽  
Family Carer ◽  
Family Carers ◽  
North West ◽  
Care Services ◽  
People With Dementia ◽  
Health And Social Care ◽  
Person With Dementia

Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.

scholarly journals Seeing the collective: family arrangements for care at home for older people with dementia

2018 ◽  
Vol 39 (06) ◽  
pp. 1200-1218 ◽  
Author(s):  
CHRISTINE CECI ◽  
HOLLY SYMONDS BROWN ◽  
MARY ELLEN PURKIS
Keyword(s):  
Family Care ◽  
High Volume ◽  
Ethnographic Study ◽  
Family Carers ◽  
Care Giving ◽  
People With Dementia ◽  
Home Based ◽  
Health And Social Care ◽  
Care At Home ◽  
At Home

ABSTRACTWith the predicted growth in the number of people with dementia living at home across the globe, the need for home-based care is expected to increase. As such, it will be primarily family carers who will provide this crucial support to family members. Designing appropriate support for family carers is thus essential to minimise risks to their health, to prevent premature institutionalisation or poor care for persons with dementia, as well as to sustain the effective functioning of health and social care systems. To date, the high volume of research related to care at home and acknowledged low impact of interventions suggests that a re-examination of the nature of care at home, and how we come to know about it, is necessary if we are to advance strategies that will contribute to better outcomes for families. This paper describes findings from an ethnographic study that was designed to support an analysis of the complexity and materiality of family care arrangements – that is, the significance of the actual physical, technological and institutional elements shaping care-giving situations. In this paper, we describe the arrangements made by one family to show the necessary collectivity of these arrangements, and the consequences of the formal care system's failure to respond to these.

scholarly journals The Role of Information and Communication Technology (ICT) for Older Adults’ Decision-Making Related to Health, and Health and Social Care Services in Daily Life—A Scoping Review

2021 ◽  
Vol 19 (1) ◽  
pp. 151
Author(s):  
Susanna Nordin ◽  
Jodi Sturge ◽  
Maria Ayoub ◽  
Allyson Jones ◽  
Kevin McKee ◽  
...  
Keyword(s):  
Older Adults ◽  
Decision Making ◽  
Information And Communication Technology ◽  
Communication Technology ◽  
Scoping Review ◽  
Social Care ◽  
Care Services ◽  
Health And Social Care ◽  
Information And Communication

Information and communication technology (ICT) can potentially support older adults in making decisions and increase their involvement in decision-making processes. Although the range of technical products has expanded in various areas of society, knowledge is lacking on the influence that ICT has on older adults’ decision-making in everyday situations. Based on the literature, we aimed to provide an overview of the role of ICT in home-dwelling older adults’ decision-making in relation to health, and health and social care services. A scoping review of articles published between 2010 and 2020 was undertaken by searching five electronic databases. Finally, 12 articles using qualitative, quantitative, and mixed-method designs were included. The articles were published in journals representing biology and medicine, nursing, informatics, and computer science. A majority of the articles were published in the last five years, and most articles came from European countries. The results are presented in three categories: (i) form and function of ICT for decision-making, (ii) perceived value and effect of ICT for decision-making, and (iii) factors influencing ICT use for decision-making. According to our findings, ICT for decision-making in relation to health, and health and social care services was more implicitly described than explicitly described, and we conclude that more research on this topic is needed. Future research should engage older adults and health professionals in developing technology based on their needs. Further, factors that influence older adults’ use of ICT should be evaluated to ensure that it is successfully integrated into their daily lives.

scholarly journals Exploring good practice in life story work with people with dementia: The findings of a qualitative study looking at the multiple views of stakeholders

Dementia ◽  
2018 ◽  
Vol 19 (2) ◽  
pp. 182-194 ◽  
Author(s):  
Kate Gridley ◽  
Yvonne Birks ◽  
Gillian Parker
Keyword(s):  
Focus Groups ◽  
Life Story ◽  
Good Practice ◽  
Family Carers ◽  
People With Dementia ◽  
Practice Approach ◽  
Story Work ◽  
The Individual ◽  
Person With Dementia ◽  
Design And Methods

Introduction Despite growing international interest in life story work as a tool for person-centred dementia care, there is little agreement on what constitutes good practice and little evidence from the perspectives of people with dementia or their family carers. Design and methods This paper reports the findings from the qualitative element of a larger study looking at the feasibility of evaluating life story work. Ten focus groups were held with 73 participants: four groups of people with dementia (25 participants); three with family carers (21 participants); and three with staff, professionals and volunteers with experience of life story work (27 participants). Findings: It became apparent through our focus groups that, when people talk about ‘life story work’, different people mean different things. This related to both process and outcomes. In particular, a person with dementia may have very different views from others about what life story work is for and how their life story products should be used. There was general agreement that a good practice approach would be tailored to the individual needs and preferences of the person with dementia. However, in practice many settings used templates and the process was led by staff or completed by family carers. Conclusion We produced nine key features of good practice which could be used to guide the life story work process. Key elements include the recognition that not everyone will want to take part in life story work and that some people may even find it distressing; the importance of being led by the person with dementia themselves; the need for training and support for staff, carers and volunteers; and the potential for life story work to celebrate the person’s life today and look to the future.

scholarly journals “What Bothers Me Most Is the Disparity between the Choices that People Have or Don’t Have”: A Qualitative Study on the Health Systems Responsiveness to Implementing the Assisted Decision-Making (Capacity) Act in Ireland

2020 ◽  
Vol 17 (9) ◽  
pp. 3294 ◽  
Author(s):  
Éidín Ní Shé ◽  
Deirdre O’Donnell ◽  
Sarah Donnelly ◽  
Carmel Davies ◽  
Francesco Fattori ◽  
...  
Keyword(s):  
Decision Making ◽  
Older People ◽  
Healthcare System ◽  
Health Systems ◽  
Critical Incident ◽  
Family Carers ◽  
Acute Setting ◽  
Face To Face ◽  
Health And Social Care ◽  
Diagnosis Of Dementia

Objective: The Assisted Decision-Making (ADM) (Capacity) Act was enacted in 2015 in Ireland and will be commenced in 2021. This paper is focused on this pre-implementation stage within the acute setting and uses a health systems responsiveness framework. Methods: We conducted face-to-face interviews using a critical incident technique. We interviewed older people including those with a diagnosis of dementia (n = 8), family carers (n = 5) and health and social care professionals (HSCPs) working in the acute setting (n = 26). Results: The interviewees reflected upon a healthcare system that is currently under significant pressures. HSCPs are doing their best, but they are often halted from delivering on the will and preference of their patients. Many older people and family carers feel that they must be very assertive to have their preferences considered. All expressed concern about the strain on the healthcare system. There are significant environmental barriers that are hindering ADM practice. Conclusions: The commencement of ADM provides an opportunity to redefine the provision, practices, and priorities of healthcare in Ireland to enable improved patient-centred care. To facilitate implementation of ADM, it is therefore critical to identify and provide adequate resources and work towards solutions to ensure a seamless commencement of the legislation.

‘This is Still All about Love’: Practitioners’ Perspectives of Working with Family Carers Affected by the Harmful Behaviour of the Older Person for Whom They Care

2020 ◽  
Author(s):  
Louise Isham ◽  
Caroline Bradbury-Jones ◽  
Alistair Hewison
Keyword(s):  
Later Life ◽  
Ethical Challenges ◽  
Family Carers ◽  
Care Needs ◽  
Group Discussions ◽  
Health And Social Care ◽  
The Family ◽  
The Uk ◽  
Policy Systems

Abstract This article explores a hidden and under-acknowledged dimension of caring in family life: when older people with care needs act in a harmful, abusive or violent way towards the family member(s) who cares for them. Thirty-eight health and social care professionals, working in the UK, took part in five focus groups to explore their experience of working with families in this situation. The group discussions were stimulated by vignettes developed from interviews with carers affected by harmful behaviour, and the data generated using this method were analysed using a thematic approach. There were two principal findings: (i) ‘carer harm’ is a serious and under-acknowledged problem, which practitioners have extensive experiential knowledge of and (ii) practitioners face considerable practical and ethical challenges working with affected families. Drawing on Miranda Fricker’s concept of epistemic injustice, we discuss how contemporary social, legal and policy systems can make it difficult for practitioners to identify and meet the needs of affected families. Finally, we explore the role of social workers—and the support they need as a professional group—to work alongside a ‘hidden’ group of families seeking to manage the intersection of care, harm and intimacy in later life.

Stress as Experienced by People with Dementia: An Interpretative Phenomenological Analysis

Dementia ◽  
2017 ◽  
Vol 18 (4) ◽  
pp. 1427-1445 ◽  
Author(s):  
Barbara K Sharp
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Sense Of Self ◽  
Phenomenological Analysis ◽  
People With Dementia ◽  
Health And Social Care ◽  
Self Worth ◽  
And Coping ◽  
Study Participants ◽  
Person With Dementia ◽  
The Impact

Health and social care research on stress in dementia has predominantly considered the stress experienced by family and professional carers. Focus on the person with dementia has frequently laid emphasis on the impact of stress-related behaviour on others and how such behaviour might be ‘managed’. This paper describes a qualitative study which gives voice to people with dementia on the subject of stress and responds to the need for a better understanding of stress as it is experienced by people with dementia themselves. An interpretative phenomenological analysis was conducted on data collected from a purposive sample of people diagnosed with varying types of dementia from across Scotland. Discussions across five focus groups consisting of 21 participants with dementia in total generated data which was audio and video recorded, and analysed thematically. Five key themes emerged, described in the participants’ own words, which were: (1) ‘Something’s torn, your life’s torn’; (2) ‘Families can bring stress’; (3) ‘It’s the stress of living with dementia’; (4) ‘A whole new set of rules’; and (5) ‘It’s our lives and we’ll get it under control ourselves’. These themes reflect experiences of loss, challenges to one’s sense of self, relationship dynamics, living with the symptoms of dementia, learning to do things differently and establishing coping mechanisms that provide control. Study participants illustrated individual potential for adapting and coping with some of the most stressful aspects of living with dementia, challenging assumptions of inevitable fixed decline and progressive vulnerability to stress. Participants describe a process of recovery in their perceptions of self-worth, purpose and value in life following diagnosis.

Ethical aspects of researching subjective experiences in early-stage dementia

2011 ◽  
Vol 18 (5) ◽  
pp. 651-661 ◽  
Author(s):  
Hanna-Mari Pesonen ◽  
Anne M Remes ◽  
Arja Isola
Keyword(s):  
Early Stage ◽  
Family Members ◽  
Subjective Experiences ◽  
Ethical Aspects ◽  
People With Dementia ◽  
The Family ◽  
Research Interviews ◽  
Conducting Research ◽  
Person With Dementia

This article is based on a qualitative longitudinal study that followed the subjective experiences of both people living with dementia and their family members during the early stages of the illness. The purpose of this article is to describe and reflect on the ethical and methodological issues that occurred during data collection. The article focuses on the situation of the person with dementia and the family member and the role of the researcher when conducting the research interviews. Based on the results of this study, conducting research interviews with people with dementia and their family members poses several ethical and methodological challenges that must be addressed. In doing so, ethically sound dementia-specific research methods will be actively developed enhancing our understanding of living with dementia and providing new insights into the care of people with dementia and their family members.

A study of the effectiveness of MP3 players to support family carers of people living with dementia at home

2014 ◽  
Vol 27 (3) ◽  
pp. 471-479 ◽  
Author(s):  
Virginia Lewis ◽  
Michael Bauer ◽  
Margaret Winbolt ◽  
Carol Chenco ◽  
Francine Hanley
Keyword(s):  
Mental Health ◽  
Low Cost ◽  
Family Carers ◽  
Health And Wellbeing ◽  
People With Dementia ◽  
Mp3 Players ◽  
Mp3 Player ◽  
High Level ◽  
And Coping ◽  
Person With Dementia

ABSTRACTBackground:Music can be therapeutic to people with dementia; however, little is known about its effect on the family carers. This project aimed to (1) assess the effects of MP3 player use by a person with dementia on caregivers’ mental health and wellbeing, including their self-care and health-promoting behavior and (2) determine whether MP3 player use increases caregivers’ self-reported capacity to cope with their role.Methods:A pre–post quantitative and qualitative design was used. Carers completed a survey prior to commencing and four weeks after using the player. The survey included validated measures to assess the level of stress and coping among carers. Carers also kept a diary of the way they used the MP3 player. Half of the carers were interviewed about their experiences at the end of the study.Results:Of 59 people who started using the MP3 player, 51 carers completed the four-week study period and surveys. Use of the MP3 player significantly decreased psychological distress, significantly improved the mental health and wellbeing of carers, significantly increased caregiver self-efficacy to manage symptoms of dementia, and was reported to provide valued respite from the high level of vigilance required for caring for a person with dementia.Conclusion:An MP3 player loaded with music can be a low cost and relatively simple and effective additional strategy to support families caring for people with dementia in the community.

scholarly journals Remembering people with dementia during the COVID-19 crisis

2020 ◽  
Vol 3 ◽  
pp. 15 ◽  
Author(s):  
Eamon O'Shea
Keyword(s):  
Family Carers ◽  
Current Crisis ◽  
Department Of Health ◽  
People With Dementia ◽  
Difficult Time ◽  
New Public ◽  
Practical Support ◽  
Health And Social Care ◽  
Information And Communication ◽  
Shared Humanity

This letter argues that we need to pay particular attention to people with dementia during this difficult time of the COVID-19 pandemic. Social distancing rules and cocooning for people aged 70 years and over are now in place in Ireland to slow down the rate of infection and protect vulnerable older people.  This letter argues that we need, more than ever, to assert the personhood of people with dementia at this difficult time. That means more person-centred care and practical support structures for family carers to allow them to continue to care at home in a safe and life-enhancing way. New public broadcasting initiatives could create information and communication channels for people with dementia and their carers, as well as demonstrating empathy and solidarity with their predicament. Government, the Department of Health, the HSE and the voluntary sector have risen to the challenge of COVID-19 in all sectors of society. So too have ordinary citizens. Now we need to unite even more to create an unyielding commitment and adherence to the principles of  decency, justice  and equity in the allocation of scarce  health and social care resources. By doing this, we will demonstrate our caring potential and capacity in a way that reflects our shared humanity, not only in the current crisis, but into the future.

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