Care at home for people with dementia: as in a total institution?

2006 ◽  
Vol 27 (1) ◽  
pp. 3-24 ◽  
Author(s):  
JANET ASKHAM ◽  
KATE BRIGGS ◽  
IAN NORMAN ◽  
SALLY REDFERN
Keyword(s):  
Intimate Relationships ◽  
Social Relationship ◽  
Intimate Relationship ◽  
Total Institution ◽  
Home Life ◽  
The People ◽  
People With Dementia ◽  
Custodial Care ◽  
Care At Home ◽  
At Home

This article examines three kinds of social relationship likely to be present when people with dementia are cared for at home by relatives or friends: custodial care, an intimate relationship, and home-life. Using Goffman's three defining aspects of custodial care – routinisation, surveillance and mortification of the self – the paper examines whether these characterised the care of people with dementia at home and, if so, whether they conflicted with the intimate relationship and with home-life. The study involved sustained observations and interviews with 20 people with dementia and their carers in and around London, and qualitative analysis of the data. It was found that all three aspects of custodial care were present although not fully realised, and that they led to difficulties, many of which were associated with the concurrent pursuit of an intimate relationship and home-life. In all cases, daily life was routinised partly to help accomplish care tasks but was found monotonous, while surveillance was usual but restrictive, and prevented both the carers and those with dementia from doing things that they wished to do. Those with dementia were distressed by the denial of their former identities, such as car-driver or home-maker, and by being treated like children. Both the carers and the people with dementia had various ways of balancing custodial care, their intimate relationships and home-life, such as combining routines with other activities, evading surveillance or carrying it out by indirect means, and there were many attempts to maintain some semblance of former identities.

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 facilitators and challenges of dying at home with dementia: A narrative synthesis

2018 ◽  
Vol 32 (6) ◽  
pp. 1042-1054 ◽  
Author(s):  
Caroline Mogan ◽  
Mari Lloyd-Williams ◽  
Karen Harrison Dening ◽  
Christopher Dowrick
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Eligibility Criteria ◽  
People With Dementia ◽  
Care At Home ◽  
At Home

Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia. Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia. Design: Narrative synthesis of qualitative and quantitative data. Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017. Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’. Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.

Enabling the person with moderate dementia to remain at home

2020 ◽  
Vol 14 (7) ◽  
pp. 324-329
Author(s):  
Linda Nazarko
Keyword(s):  
Public Health ◽  
Older People ◽  
End Of Life ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Care At Home ◽  
The Uk ◽  
At Home

Most older people would prefer to remain at home and receive care at home until the end of life. In the UK, around 16% of older people die at home ( Hall et al, 2011:3 , Figure 1:1) and around 10% of people with dementia die at home ( Public Health England (PHE), 2019 ). In Europe, including the UK, the population is ageing and it is important that older people are enabled to remain at home whenever possible ( Hall et al, 2011 ). As dementia progresses, this can become more difficult, but can be managed if the appropriate support is provided. This article explores ways to support people with moderate dementia to remain at home.

The significance of overlooked objects: Materiality and care at home for people with dementia

2019 ◽  
Vol 27 (1) ◽  
Author(s):  
Meiriele Tavares Araujo ◽  
Isabela Silva Câncio Velloso ◽  
Christine Ceci ◽  
Mary Ellen Purkis
Keyword(s):  
People With Dementia ◽  
Care At Home ◽  
At Home

Accomplishing Care at Home for People With Dementia: Using Observational Methodology

2003 ◽  
Vol 13 (2) ◽  
pp. 268-280 ◽  
Author(s):  
Kate Briggs ◽  
Janet Askham ◽  
Ian Norman ◽  
Sally Redfern
Keyword(s):  
Observational Methodology ◽  
People With Dementia ◽  
Care At Home ◽  
At Home

Met and unmet care needs of older people with dementia living at home: Personal and informal carers’ perspectives

Dementia ◽  
2017 ◽  
Vol 18 (6) ◽  
pp. 1963-1975 ◽  
Author(s):  
Justyna Mazurek ◽  
Dorota Szcześniak ◽  
Katarzyna Urbańska ◽  
Rose-Marie Dröes ◽  
Joanna Rymaszewska
Keyword(s):  
Older People ◽  
Daily Living ◽  
Multidisciplinary Treatment ◽  
Holistic Approach ◽  
Care Needs ◽  
The People ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Informal Carers ◽  
At Home

In Poland, there are few reports of the holistic approach to caring for older people with dementia. The aim of this study was to assess the needs of people with dementia living at home. This was done by evaluating the perspective of people with dementia themselves and that of their carers. The study included 47 people diagnosed with mild to moderate dementia and 41 informal carers, all living in Wroclaw in Poland, involved in the MeetingDem project. The needs were assessed using the CANE. Other scales used were: the MMSE, the GDS and the QOL-AD. The carers reported significantly more needs, both met and unmet, than the people with dementia themselves. The most frequent reported unmet needs both by the people with dementia and their carers included activities of daily living, psychological distress and the need for company. Based on this study’s findings, tailored multidisciplinary treatment, adjusted to their needs and wishes, can be offered thus creating integrated and individualised support.

Care at home for people with dementia: Routines, control and care goals

2002 ◽  
Vol 3 (4) ◽  
pp. 12-23 ◽  
Author(s):  
Sally Redfern ◽  
Ian Norman ◽  
Kate Briggs ◽  
Janet Askham
Keyword(s):  
People With Dementia ◽  
Care At Home ◽  
At Home

A comprehensive picture of palliative care at home from the people involved

2005 ◽  
Vol 9 (4) ◽  
pp. 315-324 ◽  
Author(s):  
Gunilla Appelin ◽  
Gunilla Brobäck ◽  
Carina Berterö
Keyword(s):  
Palliative Care ◽  
The People ◽  
Comprehensive Picture ◽  
Care At Home ◽  
At Home

scholarly journals Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT): A Study Protocol for a Randomised Controlled Trial of a Resource Kit.

2021 ◽  
Author(s):  
Donna Maria Coleston-Shields ◽  
David Challis ◽  
Angela Worden ◽  
Emma Broome ◽  
Tom Dening ◽  
...  
Keyword(s):  
Randomised Controlled Trial ◽  
Hospital Admissions ◽  
Controlled Trial ◽  
Practice Trial ◽  
Treatment As Usual ◽  
People With Dementia ◽  
Care At Home ◽  
Randomised Controlled ◽  
At Home

Abstract BACKGROUNDImproving care at home for people with dementia is a core policy goal in the dementia strategies of many European countries. A challenge to effective home support is the occurrence of crises in the care of people with dementia which arise from changes in their health and social circumstances. Improving the management of these crises may prevent hospital admissions and facilitate better and longer care at home. This trial is part of a National Institute for Health Research funded programme, AQUEDUCT, which aims to improve the quality and effectiveness of teams working to manage crises in dementia.METHODS/DESIGNIt is a pragmatic randomised controlled trial of an online Resource Kit to enhance practice in teams managing crises in dementia care. Thirty teams managing mental health crises in dementia in community settings will be randomised between the Resource Kit intervention and treatment as usual. The primary outcome measure is psychiatric admissions to hospital for people with dementia in the teams’ catchment area recorded six months after randomisation. Other outcomes include: quality of life measures for people with dementia and their carers; practitioner impact measures; acute hospital admissions; and costs. To enhance understanding of the resource kit intervention, qualitative work will explore staff, patient and carers’ experience.DISCUSSIONThe Resource Kit intervention reflects current policy to enable home-based care for people with dementia by addressing the management of crises which threaten the viability of care at home. It is based upon a model of best practice for managing crises in dementia designed to enhance the quality of care, developed in partnership with people with dementia, carers and practitioners. If the Resource Kit is shown to be clinically and cost effective in this study, this will enhance the probability of its incorporation into mainstream practice. TRIAL REGISTRATION: ISRCTN 42855694; Registered on 04/03/2021; Protocol number: 127686/2020v9; Research Ethics Committee, 09/03/2021, Ref 21/WM/0004; IRAS ID: 289982https://doi.org/10.1186/ISRCTN42855694

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