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.

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.

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 New networked technologies and carers of people with dementia: an interview study

2010 ◽  
Vol 30 (6) ◽  
pp. 1073-1088 ◽  
Author(s):  
JOHN POWELL ◽  
LEE GUNN ◽  
PAM LOWE ◽  
BART SHEEHAN ◽  
FRANCES GRIFFITHS ◽  
...  
Keyword(s):  
Information And Communication Technologies ◽  
New Technologies ◽  
Group Discussion ◽  
Personal Contact ◽  
People With Dementia ◽  
New Information ◽  
Health And Social Care ◽  
Actual Use ◽  
Information And Communication ◽  
The One

ABSTRACTDementia is one of the greatest contemporary health and social care challenges, and novel approaches to the care of its sufferers are needed. New information and communication technologies (ICT) have the potential to assist those caring for people with dementia, through access to networked information and support, tracking and surveillance. This article reports the views about such new technologies of 34 carers of people with dementia. We also held a group discussion with nine carers for respondent validation. The carers' actual use of new ICT was limited, although they thought a gradual increase in the use of networked technology in dementia care was inevitable but would bypass some carers who saw themselves as too old. Carers expressed a general enthusiasm for the benefits of ICT, but usually not for themselves, and they identified several key challenges including: establishing an appropriate balance between, on the one hand, privacy and autonomy and, on the other: maximising safety; establishing responsibility for and ownership of the equipment and who bears the costs; the possibility that technological help would mean a loss of valued personal contact; and the possibility that technology would substitute for existing services rather than be complementary. For carers and dementia sufferers to be supported, the expanding use of these technologies should be accompanied by intensive debate of the associated issues.

Telling it as it is: involving people with dementia and family carers in policy making, service design and workforce development

2016 ◽  
Vol 20 (4) ◽  
pp. 219-222
Author(s):  
Ruth Marion Eley
Keyword(s):  
Workforce Development ◽  
Policy Making ◽  
Service Providers ◽  
Early Stage ◽  
Service Development ◽  
Family Carers ◽  
Content Type ◽  
Engagement Strategies ◽  
People With Dementia ◽  
Health And Social Care

Purpose The purpose of this paper is to highlight the need for proper involvement of people with dementia and carers in policy making and to suggest practical ways to achieve this. Design/methodology/approach Drawing from personal experience derived from a long career in service development in health and social care, the author outlines the importance of recognising that people with dementia and family carers are experts by experience and the merits of involving people at an early stage. Findings The best ideas come from involved people. Without the insights gained through the lived experiences of people with dementia and family carers, policy makers and professionals run the risk of developing costly services that do not meet the needs of those who will be using them. Practical implications A number of key practical pointers are developed and summarised. Engagement and one-off consultations are not enough. Real involvement has to be part of everyday practice, at all levels. It requires investment to enable people with dementia and carers to have a seat at the table, speak about what matters to them and help professionals develop relevant services that meet their needs. Originality/value The author is able to draw on particular insights gained as Programme Lead for Dementia at the Department of Health during the development of the first English National Dementia Strategy and, more recently, experience of developing engagement strategies in various localities. This included supporting people with dementia and family carers before, during and after key events at which they shared their experiences with commissioners and service providers.

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 “I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Penny Rapaport ◽  
Alexandra Burton ◽  
Monica Leverton ◽  
Ruminda Herat-Gunaratne ◽  
Jules Beresford-Dent ◽  
...  
Keyword(s):  
Risk Taking ◽  
Qualitative Interviews ◽  
Care Home ◽  
Psychosocial Interventions ◽  
Family Carers ◽  
Community Connectedness ◽  
Stakeholder Perspectives ◽  
People With Dementia ◽  
Health And Social Care ◽  
At Home

Abstract Background Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this. Methods We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England. Results We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals’ accounts prioritised autonomy and ‘living well with dementia’, while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk. Discussion Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining self-management with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk.

scholarly journals Clinical and cost-effectiveness of a New psychosocial intervention to support Independence in Dementia (NIDUS-family) for family carers and people living with dementia in their own homes: a randomised controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Alexandra Burton ◽  
Penny Rapaport ◽  
Marina Palomo ◽  
Kathryn Lord ◽  
Jessica Budgett ◽  
...  
Keyword(s):  
Usual Care ◽  
Clinical Training ◽  
Goal Attainment ◽  
Intervention Group ◽  
Skills Training ◽  
Family Carer ◽  
Family Carers ◽  
People With Dementia ◽  
Health And Social Care ◽  
Randomised Controlled

Abstract Background Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia’s life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads’ selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months. Methods A randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6–8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1–2 months to support implementation, with a trained facilitator. Discussion Increasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home. Trial registration International Standard Randomised Controlled Trials Number ISRCTN11425138. Registered on 7 October 2019

A multiple perspective view of personhood in dementia

2021 ◽  
pp. 1-19
Author(s):  
Niamh Hennelly ◽  
Eamon O'Shea
Keyword(s):  
Structural Barriers ◽  
Family Carers ◽  
Structured Interviews ◽  
Perspective View ◽  
Term Care ◽  
Multiple Perspective ◽  
The Core ◽  
People With Dementia ◽  
Health And Social Care ◽  
Core Elements

Abstract Personhood has been a key influence on the development of person-centred care models in dementia. However, there is ambiguity around the concept and interpretation of personhood, and what it means in practical terms for the delivery of care to people with dementia. This study examines the conceptualisation of personhood within the formal care system for people with dementia in Ireland. A multiple perspective study design examines the experiences of personhood in dementia from the perspectives of people with dementia, family carers and a range of formal carers. Semi-structured interviews with participants were conducted in both community and long-term care settings. Interpretative phenomenological analysis is used to examine the data. A total of 31 participants were interviewed: eight people with dementia, eight family carers and 15 formal carers. There is general consensus on the core elements of personhood among all participants: interests and preferences; lifecourse experiences; social interaction; family; and place. However, there is ambiguity among family carers and formal carers in the interpretation of changes to personhood as the disease progresses. Interpersonal and structural barriers to supporting personhood are identified by all participants. The findings provide guidance on the traits of personhood-enhancing care, including effective communication skills, and the potential of health and social care reform to support the core elements of personhood among people with dementia.

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 Spontaneous concerns about risk and abuse reported by people with dementia and their carers

2017 ◽  
Vol 19 (2) ◽  
pp. 92-99 ◽  
Author(s):  
Susan M. Benbow ◽  
Paul Kingston
Keyword(s):  
Secondary Analysis ◽  
Driving Safety ◽  
Care Practice ◽  
Family Carers ◽  
Content Type ◽  
People With Dementia ◽  
Health And Social Care ◽  
Wide Range ◽  
The Impact ◽  
Practical Implications

Purpose The purpose of this paper is to look at concerns about risk/abuse expressed spontaneously by people with dementia (PwD) and their carers in narratives describing their journeys with dementia. Design/methodology/approach A total of 35 narratives were elicited from PwD, carers of PwD and couples where one partner was living with dementia as part of a study on the impact of producing narratives on PwD and their carers. Participants were found to allude to risk/abuse, or specifically mention thoughts on risk and abuse in their narratives. A secondary analysis of the theme of risk/abuse is reported here. Findings Concerns about risk/exploitation were often expressed in the narratives, and covered a range of areas including driving, safety in the home, safety outdoors, falls, finances, risk to PwD from others, risk to others from PwD, potential or actual police incidents and neglect. Research limitations/implications The narratives were elicited as part of another project and participants were not asked directly about risk; themes reported here were brought up spontaneously by participants. Practical implications In relation to dementia a wide range of risk/abuse issues is of concern to PwD and their carers, including driving and financial vulnerabilities. PwD and carers are prepared to talk about risk/abuse when given an opportunity. It is important to investigate and understand experiences and concerns about risk/abuse if they are to be addressed in health and social care practice. Originality/value The narratives offer unique insights into the concerns of PwD and family carers.

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