scholarly journals Involving service users in the development of the Support at Home: Interventions to Enhance Life in Dementia Carer Supporter Programme for family carers of people with dementia

2012 ◽  
Vol 18 (1) ◽  
pp. 95-110 ◽  
Author(s):  
Karen J. Burnell ◽  
Amber Selwood ◽  
Theresa Sullivan ◽  
Georgina M. Charlesworth ◽  
Fiona Poland ◽  
...  
Keyword(s):  
Service Users ◽  
Family Carers ◽  
People With Dementia ◽  
Dementia Carer ◽  
At Home

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 Occupational therapy for people with dementia and their family carers provided at home: a systematic review and meta-analysis

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e026308 ◽  
Author(s):  
Sally Bennett ◽  
Kate Laver ◽  
Sebastian Voigt-Radloff ◽  
Lori Letts ◽  
Lindy Clemson ◽  
...  
Keyword(s):  
Systematic Review ◽  
Occupational Therapy ◽  
Psychological Symptoms ◽  
Meta Analysis ◽  
Family Carers ◽  
Moderate Quality ◽  
People With Dementia ◽  
Behavioural And Psychological Symptoms ◽  
Randomised Controlled ◽  
At Home

ObjectiveTo determine the effect of occupational therapy provided at home on activities of daily living, behavioural and psychological symptoms of dementia (BPSD) and quality of life (QOL) for people with dementia, and the effect on family carer burden, depression and QOL.DesignSystematic review and meta-analysis.MethodsEight databases were searched to February 2018. Randomised controlled trials of occupational therapy delivered at home for people with dementia and their family carers that measured ADL, and/or BPSD were included. Two independent reviewers determined eligibility, risk of bias and extracted data.ResultsFifteen trials were included (n=2063). Occupational therapy comprised multiple components (median=8 sessions). Compared with usual care or attention control occupational therapy resulted in improvements in the following outcomes for people with dementia: overall ADL after intervention (standardised means difference (SMD) 0.61, 95% CI 0.16 to 1.05); instrumental ADL alone (SMD 0.22, 95% CI 0.07 to 0.37; moderate quality); number of behavioural and psychological symptoms (SMD −0.32, 95% CI −0.57 to −0.08; moderate quality); and QOL (SMD 0.76, 95% CI 0.28 to 1.24) after the intervention and at follow-up (SMD 1.07, 95% CI 0.58 to 1.55). Carers reported less hours assisting the person with dementia (SMD −0.33, 95% CI −0.58 to −0.07); had less distress with behaviours (SMD −0.23, 95% CI −0.42 to −0.05; moderate quality) and improved QOL (SMD 0.99, 95% CI 0.66 to 1.33; moderate quality). Two studies compared occupational therapy with a comparison intervention and found no statistically significant results. GRADE ratings indicated evidence was very low to moderate quality.ConclusionsFindings suggest that occupational therapy provided at home may improve a range of important outcomes for people with dementia and their family carers. Health professionals could consider referring them for occupational therapy.PROSPERO registration numberCRD42011001166.

scholarly journals Managing behavioural and psychological symptoms in community dwelling older people with dementia: 2. A systematic review of qualitative studies

Dementia ◽  
2018 ◽  
Vol 18 (7-8) ◽  
pp. 2950-2970 ◽  
Author(s):  
Andreas Braun ◽  
Daksha P Trivedi ◽  
Angela Dickinson ◽  
Laura Hamilton ◽  
Claire Goodman ◽  
...  
Keyword(s):  
Systematic Review ◽  
Psychological Symptoms ◽  
Community Dwelling ◽  
Qualitative Studies ◽  
Future Research ◽  
Care Providers ◽  
Family Carers ◽  
People With Dementia ◽  
Behavioural And Psychological Symptoms ◽  
At Home

Background People living with dementia often develop distressing behavioural and psychological symptoms (BPSD) that can affect their quality of life and the capacity of family carers and staff providing support at home. This systematic review of qualitative studies considers the views and experiences of people living with dementia and care providers about these symptoms and what helps to reduce their impact. Methods The two-stage review involved (a) An initial mapping of the literature to understand the range of BPSD, and how it is operationalised by different groups, to develop a search strategy; (b) A search of electronic databases from January 2000 to March 2015, updated in October 2016. Included studies focused on people living in their own homes. Data extraction and thematic analysis were structured to provide a narrative synthesis of the evidence. Results We retrieved 17, 871 records and included relevant qualitative papers (n = 58) targeting community-dwelling people with dementia and family carers around the management of BPSD. Five key themes were identified: (1) Helpful interventions/support for BPSD management, (2) Barriers to support services for BPSD management, (3) Challenges around recognition/diagnosis of BPSD, (4) Difficulties in responding to aggression and other BPSD, and (5) Impact of BPSD on family carers and people living with dementia. Conclusions Family carers sometimes feel that their experiences of BPSD may not be evident to professionals until a crisis point is reached. Some helpful services exist but access to support, lack of knowledge and skills, and limited information are consistently identified as barriers to their uptake. The lack of common terminology to identify and monitor the range of BPSD that people with dementia living at home may experience means that closer attention should be paid to family carer accounts. Future research should include qualitative studies to evaluate the relevance of interventions.

scholarly journals “In the Bengali Vocabulary, There Is No Such Word as Care Home”:Caring Experiences of UK Bangladeshi and Indian Family Carers of People Living With Dementia at Home

2019 ◽  
Author(s):  
Ruminda Herat-Gunaratne ◽  
Claudia Cooper ◽  
Naaheed Mukadam ◽  
Penny Rapaport ◽  
Monica Leverton ◽  
...  
Keyword(s):  
Care Home ◽  
Care Recipient ◽  
Family Carers ◽  
Structured Interviews ◽  
Indian Family ◽  
People With Dementia ◽  
Care Family ◽  
Care Models ◽  
Design And Methods ◽  
At Home

Abstract Background and Objectives We aimed to explore experiences of South Asian carers of people with dementia receiving health or social care in the United Kingdom, purposively recruited to encompass a range of migration, economic and cultural experiences. While previous work in this area has reported carers’ understanding of, and attitudes to dementia, we explored how carers’ cultural identities and values influenced their experiences, negotiation of the caring role and relationship with services. Research Design and Methods We conducted semi-structured interviews with 10 Bangladeshi and Indian family carers of people living with dementia at home. We recruited participants from community settings in London and Bradford, UK. Interviews were audio recorded, transcribed and thematically analyzed. Results We identified 4 themes: an expectation and duty to care, expectation and duty as a barrier to accessing formal care (family carer reluctance, care recipient reluctance, and service organization), culturally (in)sensitive care, and the importance of support from informal care networks. Discussion and Implications Interviewees described tensions between generations with different understandings of familial care obligations. Expectations to manage led to burden and guilt, and the cost of caring, in terms of lost employment and relationships was striking. Unlike in previous studies, interviewees wanted to engage and be supported by services, but were frequently offered care models they could not accept. There was a tension between a state-provided care system obliged to provide care when there are no alternatives, and family carers who feel a duty to always provide alternatives. Informal social networks often provided valued support.

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 Conversation Analysis (CA) as a tool for exploring interaction in an online video-conferencing based support service

2019 ◽  
Vol 13 (3) ◽  
pp. 150-157
Author(s):  
John Chatwin ◽  
Phil McEvoy
Keyword(s):  
Conversation Analysis ◽  
Large Data ◽  
Support Service ◽  
Communication Training ◽  
Online Video ◽  
Family Carers ◽  
Content Type ◽  
The North ◽  
People With Dementia ◽  
At Home

Purpose Around 60 per cent of people with dementia in the UK live at home. The experience of caring for a family member with dementia can be rewarding and positive, but it can also be significantly stressful. Current healthcare policy is encouraging greater provision to support family carers. Along with respite-care, day-care and support group-based initiatives, there has also been a focus on developing dementia-specific communication training. The paper discusses this issue. Design/methodology/approach The authors outline a new initiative “Empowered Carers” which is being piloted in the North of England. Empowered Carers is an online support and communication training service for family carers who are caring for someone with dementia at home. It utilises online video conference-calling technology to connect carers with support workers, and also allows for simultaneous interactions involving other family members. A central tenet of the approach is a theoretically grounded support model, based on the concept of mentalisation. Findings The authors describe the background to Empowered Carers, and how a conventional evaluation strategy for the initiative is being used alongside a socio-linguistic approach (Conversation Analysis – CA). This aims to provide empirical evidence about how the assimilation of mentalisation is reflected in the structuring of speech patterns in carers during support sessions. Originality/value The authors explain the CA method, how it has been applied to similar talk-based therapeutic settings, and why its ability to explore sequential linguistic patterns across extremely large data-sets is particularly suited to studying interaction in emerging online arenas.

scholarly journals MULTIPLE PERSPECTIVES ON WHAT (IF ANY) IS AN OPTIMAL TIME FOR PEOPLE WITH DEMENTIA TO MOVE TO A CARE HOME

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S119-S119
Author(s):  
Kritika Samsi ◽  
Laura Cole ◽  
Jill Manthorpe
Keyword(s):  
Social Workers ◽  
Qualitative Interviews ◽  
Care Home ◽  
Optimal Time ◽  
Family Carers ◽  
Multiple Perspectives ◽  
People With Dementia ◽  
Trade Offs ◽  
Person With Dementia ◽  
At Home

Abstract Deciding an ‘optimal’ time for a person with dementia to move to a care home may be difficult for people with dementia, family carers, and professionals who support them; but there is currently limited evidence to help make this decision. Using phenomenology, we carried out qualitative interviews with 20 family carers, 5 people with dementia, 20 care home managers and 20 social workers, about their experiences, views and attitudes regarding timing of a move to a care home. Social workers indicated that managing risks and safety of person with dementia living in their own home were paramount when considering where person with dementia should live. These concerns included mishandling gas and electrical equipment at home, wandering and getting lost outside, and breakdown of family care. They and care home managers valued wishes of the person with dementia, and minimising any emotional distress to them when a move did come about. Family carers reported feeling stressed, and guilty around decision-making and ultimate move of their relative to a care home. Many described weighing up various risks when reaching ‘tipping point’ and making trade-offs between available options or uncertain future choices. Participants with dementia recognised they had struggled to cope at home and needed more support; however, many found the move difficult as they relocated nearer to family, away from their home and friends, and resigned themselves to less independence. Most people with dementia reported that their carers initiated discussions about timing of move, and that family discussions about this were common.

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