47 Respite Care for People with Dementia and their Carers: A Qualitative Study with Multiple Stakeholders

Abstract Background Traditional models of respite, particularly those based within residential care settings, may not always be effective, and there is evidence of low acceptability for some people with dementia and carers. The aim of this study was to synthesise multiple stakeholders’ experiences of respite services for dementia and their perspectives on respite service development. Methods Purposive sampling was employed. Semi-structured interviews were conducted with 35 key stakeholders, including people with dementia (n=6), carers (n=9), front-line staff (n=7), managers (n=8), policy-makers/academics (n=5). Data were interpreted inductively using thematic analysis, with a focus on latent patterns of meaning. Results Three salient themes were identified (‘Phases of Transition’, ‘Person-centred Respite Care’; and ‘Recalibrating Respite’). Three distinct phases of respite transitions for people with dementia and carers are discussed. Respite services that actively support transitions through empathic communication regarding clients’ concerns, support needs and preferences are highly valued. Clients described care resembling a ‘person-centred’ approach as their ideal, without using that term, but people with dementia do not always experience this type of care. The majority of providers indicated that they provide ‘person-centred care’, but many demonstrated a poor understanding of the concept; many of these providers have a biomedical view of dementia and the personhood status of people with dementia. Regarding service development, clients would prefer more choice, flexibility and responsiveness, including a shift away from residential provision towards an integrated continuum of personalised, strengths-focused community-based and in-home supports. Conclusion Any recalibration of respite towards a home/community focus will require a transformation in how dementia is constructed by society, as well as a significant financial investment. Other implementation considerations include: staffing and staff competency; and the co-ordination, integration and regulation of personalised, home-based care models. Finally, it may be necessary to replace the outdated term ‘respite’ with an alternative nomenclature that is not discordant with person-centred care principles.

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Processes of user participation among formal and family caregivers in home-based care for persons with dementia

Dementia ◽

10.1177/1471301215584702 ◽

2016 ◽

Vol 16 (2) ◽

pp. 158-177 ◽

Cited By ~ 5

Author(s):

Lill Sverresdatter Larsen ◽

Hans Ketil Normann ◽

Torunn Hamran

Keyword(s):

Family Caregivers ◽

User Participation ◽

Positioning Theory ◽

People With Dementia ◽

Home Based ◽

Decision Making Processes ◽

Care Practices ◽

Home Based Care ◽

Legal Consent ◽

Depth Interviews

Scandinavian health policy supports prolonged home-based care for people with dementia. User participation is expected to reduce family burden. The aim of this study was to explore how formal and family caregivers experience collaboration while providing home-based dementia care, with a focus on user participation. Seventeen qualitative in-depth interviews were conducted among formal and family caregivers in rural municipalities. The theme identified during this process was ‘negotiating participation in decisions’. This theme was analysed using positioning theory. Concepts such as user participation are ambiguous, and caregivers negotiate positions during decision-making processes. Such negotiations are caused by the problematic relationships among patients’ legal consent, undefined spokespersons and pragmatic care practices. These constant negotiations enable or obstruct collaboration in several situations. User participation as a concept might contribute to conflicts during collaborations. Dialogues about user participation that focus on consent and spokespersons could reduce the burden created by negotiations in practice.

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Clinical profile of home-based care patients in a Brazilian cohort

European Journal of Public Health ◽

10.1093/eurpub/ckaa165.546 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

A P P P Botelho ◽

F C B Netto ◽

R M Silva ◽

C G Filho ◽

D Chiesa ◽

...

Keyword(s):

Invasive Mechanical Ventilation ◽

Hospital Length ◽

Adult Patients ◽

Hospital Length Of Stay ◽

Main Diagnosis ◽

Care Services ◽

Home Based ◽

Care Models ◽

Adequate Provision ◽

Home Based Care

Abstract Background The concern with increasing healthcare expenditures and the quality of life of chronically dependent of invasive mechanical ventilation (IMV) patients, led to the emergence of home-based care services (HBCS), which aims the humanization of health services and the reduction of hospital length of stay. Knowledge about the models used in HBCS and the results achieved is essential to identify, plan and execute actions that minimize obstacles to the adequate provision of this service. Methods Descriptive, longitudinal and retrospective study, in a HBCS provided by a private hospital in Fortaleza, Brazil. The medical records of 98 adult patients from the HBCS in need of IMV were analyzed. Results In 2019, 156 patients went through the HBCS. Of these, 58 were under 18 years-old and not included in the sample. Of the adult patients, 42 (42,8%) were male and 56 (57,1%) female. The age range varied from 28 to 102 years-old and the median age was 85 years. 57 (58,2%) patients were admitted throughout 2019, and 16 (28,1%) of them had, at least, 1 hospital readmission in 2019. 41 (41,8%) patients had been admitted before 2019, and 6 (14,6%) of them had, at least, 1 readmission in 2019. These facts may suggest that the need of hospitalization tend to happen more at the beginning of home-based care. In 2019, 13 (13,3%) patients died. 8 (61,5%) of these were admitted in 2019, and 5 (38,4%) were already in the HBCS before that year. The main diagnosis were: Dementia (21,4%), Chronic Encephalopathy (9,1%) and Multiple Sclerosis (8,2%). Conclusions The study shows that, even in an elderly and dependent cohort, the need of re-hospitalization and mortality rates are low, which points to the need of further studies of HBCS in order to reduce hospital stay and expenditures. Key messages It is important to deepen studies related to home-based care models, in association with payment expenses inquiries, as this type of assistance seems to develop humanized and safe care. The mortality rate of the HBCS studied was 13% and the overall re-hospitalization rate was 22,4%, which points this as a promising model for IMV dependent patients.

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WHAT CONSTITUTES STABILITY OF HOME-BASED CARE ARRANGEMENTS FOR PEOPLE WITH DEMENTIA? A META-STUDY

Innovation in Aging ◽

10.1093/geroni/igx004.617 ◽

2017 ◽

Vol 1 (suppl_1) ◽

pp. 157-157 ◽

Cited By ~ 1

Author(s):

K. Köhler ◽

M. von Kutzleben ◽

I. Hochgraeber ◽

J. Dreyer ◽

B. Holle

Keyword(s):

People With Dementia ◽

Home Based ◽

Home Based Care

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Caregiver experiences and perceptions of stroke

Health SA Gesondheid ◽

10.4102/hsag.v13i1.255 ◽

2008 ◽

Vol 13 (1) ◽

pp. 29-40 ◽

Cited By ~ 11

Author(s):

Mary Thomas ◽

Kirston Greenop

Keyword(s):

South African ◽

Healthcare System ◽

Structured Interviews ◽

Term Care ◽

Role Changes ◽

The People ◽

Home Based ◽

African Context ◽

Caregiver Experiences ◽

Home Based Care

With the increasing prevalence of people in developing countries who suffer strokes, the long-term care of people who have had a stroke and who are living with disabilities has substantial consequences for caregivers and their respective families. As the caregiver plays a pivotal role in the rehabilitation of the people who have had a stroke, the objectives of this study constitute an investigation into the complexities of caregiving, including both perceptions and experiences of the healthcare system. Semi-structured interviews were utilised to elicit post-stroke experiences of six caregivers. The challenge the South African context adds to these experiences was probed. The data were analysed qualitatively by thematic and content analysis. Prominent themes associated with caregiving included: role changes and relationship disruptions within the family, occupational and social implications, fatigue, anxiety, depression, loneliness, frustration as well as financial problems. Caregiver experiences were exacerbated by the inadequate support structures available. The results are interpreted within a biopsychosocial approach, concluding with the concerns raised by caregivers on the support they require from the healthcare system in order to provide home-based care. Opsomming Met die toenemende voorkoms van beroerte in ontwikkelende lande bring die langdurige versorging van pasiënte met gestremdheid beduidende gevolge vir sorggewers en hulle onderskeie gesinne mee. Aangesien die sorggewer ‘n sleutelrol in die rehabilitasie van die beroertepasiënt speel, behels die doelstellings van hierdie studie ‘n ondersoek na die verwikkeldhede van versorging, wat sowel persepsies as ondervinding van die gesondheidsorgstelsel insluit. Semi- gestruktureerde onderhoude is aangewend om die na-beroerte ondervindings van ses sorggewers te peil. Die uitdaging wat die Suid- Afrikaanse konteks tot hierdie ondervindings meebring is ondersoek. Die data is kwalitatief deur middel van tematiese en inhoudsanalise ontleed. Prominente temas wat verbandhou met sorggewing sluit in: rolverandering en verhoudingsteurnisse binne die huisgesin, beroeps- en sosiale implikasies, uitputting, angs, depressie, eensaamheid, frustrasie sowel as finansiële probleme. Die probleme van sorggewers word vererger deur ontoereikende steunstrukture. Die resultate word binne ‘n biopsigososiale benadering ontleed, en saamgevat met probleme wat sorggewers uitspreek ten opsigte van die steun wat hulle van die gesondheidsorgstelsel benodig om tuisgebaseerde sorg te kan voorsien.

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Needs of informal caregivers during transition from home towards institutional care in dementia: a systematic review of qualitative studies

International Psychogeriatrics ◽

10.1017/s1041610214002154 ◽

2014 ◽

Vol 27 (6) ◽

pp. 891-902 ◽

Cited By ~ 33

Author(s):

Basema Afram ◽

Hilde Verbeek ◽

Michel H.C. Bleijlevens ◽

Jan P.H. Hamers

Keyword(s):

Nursing Home ◽

Transition Period ◽

Informal Caregivers ◽

Institutional Care ◽

Care Transition ◽

Term Care ◽

People With Dementia ◽

Home Based ◽

Need Support ◽

Home Based Care

ABSTRACTBackground:Alongside providing care, informal caregivers of people with dementia often need support and guidance themselves, especially during difficult periods such as the care-transition from home towards a nursing home. Knowledge on needs of informal caregivers during this period is sparse. This study aims to provide insight into problems and needs of informal caregivers caring for people with dementia during care-transition from home-based care to institutional long-term care.Methods:A systematic electronic search in CINAHL, Cochrane, Medline, PsycINFO, Pubmed and Web of Knowledge. All qualitative articles up to September 2013 were considered. The included articles underwent a quality appraisal. Thematic analysis was used to analyze problems and needs described in the articles.Results:Thirteen publications were included providing 14 topics comprising needs and problems of informal caregivers during the care-transition period. The most stated topics were: “emotional concerns” (e.g. grief and shame about the decision), “knowledge/information” (e.g. understanding the care system) and “support” (e.g. need for counseling). Similar topics were found prior and after admission, with examples specific to the either the home or nursing home situation.Conclusions:The care-transition period should be considered a continuum, as similar needs and problems were identified prior and after admission. This should be kept in mind in developing support and guidance for informal caregivers during this process. Whereas currently the situation prior and post admission are seen and treated as adjacent stages, they should be considered one integrated stage. Multicomponent programmes should be offered that are designed in a continuous way, starting prior to admission, and continuing after.

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“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

The Gerontologist ◽

10.1093/geront/gnz120 ◽

2019 ◽

Cited By ~ 3

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.

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Music Playlists for People with Dementia: Trialing A Guide for Caregivers

Journal of Alzheimer s Disease ◽

10.3233/jad-200457 ◽

2020 ◽

Vol 77 (1) ◽

pp. 219-226

Author(s):

Sandra Garrido ◽

Laura Dunne ◽

Catherine J. Stevens ◽

Esther Chang

Keyword(s):

Quality Of Life ◽

Music Programs ◽

Control Group ◽

Residential Care Facilities ◽

Music Therapist ◽

People With Dementia ◽

Home Based ◽

Waitlist Control Group ◽

Home Based Care

Background: Music programs have the potential to provide an effective non-pharmacological tool for caregivers to reduce depression and agitation and increase quality of life in people with dementia. However, where such programs are not facilitated by a trained music therapist, caregivers need greater access to information about how to use music most effectively in response to key challenges to care, and how to pre-empt and manage adverse responses. Objective: This study reports on the trial of a Guide for use of music with 45 people with dementia and their caregivers in residential care facilities and home-based care. Methods: The study used a pre-post experimental design in which participants were randomly allocated to a treatment group or a waitlist control group. Results: Improvements to quality of life were found in the experimental group over the 6-week period. Significant increases in Interest, Responsiveness, Initiation, Involvement, and Enjoyment were reported for individual listening sessions. Conclusion: The Guide can provide an effective protocol for caregivers to follow in selecting music to manage particular challenges to care, confirming the need for caregivers to be prepared to monitor and manage potential negative responses.

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Voices From The Other Side: Perceptions Of Caregivers On Operating Unregulated Home-Based ChildCare

10.32920/ryerson.14646804.v1 ◽

2021 ◽

Author(s):

Victoria Popov

Keyword(s):

Political Economy ◽

Social Reproduction ◽

The Political ◽

Full Time ◽

Structured Interviews ◽

Home Based ◽

Better Regulation ◽

Grey Market ◽

Time Basis ◽

Home Based Care

The purpose of this qualitative study was to gain a snapshot of the unregulated home-based care sector (UHBC). All seven participants in this study were Caucasian females providing unregulated childcare on a full-time basis within their homes. Data collection took place in the form of semi-structured interviews. The UHBC providers’ perceptions about their work were examined through the theoretical lens of the political economy of care that encompasses features such as social reproduction, grey market economy, transnationalization of care, and solutions that address political economy of care. The analysis revealed that the unregulated services UHBC providers offer embody a political economy of care. However, in addressing a political economy of care, the UHBC providers believe that they are meeting families’ needs, and wish for a better regulation of UHBC. A possible system of UHBC regulation is proposed.

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