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The Cochrane Database of Systematic... Jan 2014Caring for someone with dementia can be emotionally and physically demanding. Respite care is any intervention designed to give rest or relief to caregivers. It is not... (Review)
Review
BACKGROUND
Caring for someone with dementia can be emotionally and physically demanding. Respite care is any intervention designed to give rest or relief to caregivers. It is not clear what positive and negative effects such care may have on them, or on people with dementia.
OBJECTIVES
To assess the benefits and harms of respite care for people with dementia and their caregivers, in particular the effect of respite care on rates of institutionalisation.
SEARCH METHODS
The trials were identified from a search of ALOIS, the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group, using the terms respite* OR daycare OR caregiver* relief. ALOIS contains up-to-date records from all major healthcare databases and many ongoing trial databases.
SELECTION CRITERIA
Randomised controlled trials comparing respite care with a control intervention for people with dementia.
DATA COLLECTION AND ANALYSIS
Two review authors carried out study selection independently and reached a consensus through discussion. Data were extracted by a single review author. The review authors contacted all investigators for methodological details not reported in the text and for additional data for three studies included in the previous version of the review.
MAIN RESULTS
Four trials are now included in the review, with 753 participants. They were different in many ways including the intervention, duration, outcomes and control group so pooling of data was not possible. Overall, the quality of the evidence was rated as very low. Re-analysis of outcomes using data from the published studies found no significant effects of respite care compared to no respite care on any caregiver variable. When respite care was compared to polarity therapy a significant effect was found in favour of polarity therapy for caregiver perceived stress (n = 38, MD 5.80, 95% CI 1.43 to 10.17), but not for other measures of psychological health and other caregiver outcomes. No studies reported evaluable data on outcomes related to the people with dementia.
AUTHORS' CONCLUSIONS
Current evidence does not demonstrate any benefits or adverse effects from the use of respite care for people with dementia or their caregivers. These results should be treated with caution, however, as they may reflect the lack of high quality research in this area rather than an actual lack of benefit. Given the frequency with which respite care is advocated and provided, well-designed trials are needed in this area.
Topics: Aged; Caregivers; Dementia; Humans; Randomized Controlled Trials as Topic; Respite Care; Stress, Psychological; Therapeutic Touch
PubMed: 24435941
DOI: 10.1002/14651858.CD004396.pub3 -
International Psychogeriatrics May 2023To evaluate and synthesize the evidence base on barriers and facilitators to accessing and using community-based social care in dementia. (Review)
Review
OBJECTIVES
To evaluate and synthesize the evidence base on barriers and facilitators to accessing and using community-based social care in dementia.
DESIGN
Mixed-methods systematic review.
SETTING
Community-based social care (such as day care, respite care, paid home care, and peer support groups).
PARTICIPANTS
People living with dementia and unpaid carers.
MEASUREMENTS
Seven databases were searched in March 2022, including English and German evidence published from 2000 focusing on inequalities in community-based social care for dementia across the globe. Titles and abstracts were screened by two reviewers, with all full texts screened by two reviewers also. Study quality was assessed using QualSyst.
RESULTS
From 3,904 screened records, 39 papers were included. The majority of studies were qualitative, with 23 countries represented. Barriers and facilitators could be categorized into the following five categories/themes: situational, psychological, interpersonal, structural, and cultural. Barriers were notably more prominent than facilitators and were multifaceted, with many factors hindering or facilitating access to social care linked together.
CONCLUSIONS
People with dementia and carers experience significant barriers in accessing care in the community, and a varied approach on multiple levels is required to address systemic and individual-level barriers to enable more equitable access to care for all.
PubMed: 37170588
DOI: 10.1017/S104161022300042X -
International Journal of Geriatric... Jun 2013We reviewed evidence on the cost-effectiveness of prevention, care and treatment strategies in relation to dementia. (Review)
Review
OBJECTIVE
We reviewed evidence on the cost-effectiveness of prevention, care and treatment strategies in relation to dementia.
METHODS
We performed a systematic review of available literature on economic evaluations of dementia care, searching key databases and websites in medicine, social care and economics. Literature reviews were privileged, and other study designs were included only to fill gaps in the evidence base. Narrative analysis was used to synthesise the results.
RESULTS
We identified 56 literature reviews and 29 single studies offering economic evidence on dementia care. There is more cost-effectiveness evidence on pharmacological therapies than other interventions. Acetylcholinesterase inhibitors for mild-to-moderate disease and memantine for moderate-to-severe disease were found to be cost-effective. Regarding non-pharmacological treatments, cognitive stimulation therapy, tailored activity programme and occupational therapy were found to be more cost-effective than usual care. There was some evidence to suggest that respite care in day settings and psychosocial interventions for carers could be cost-effective. Coordinated care management and personal budgets held by carers have also demonstrated cost-effectiveness in some studies.
CONCLUSION
Five barriers to achieving better value for money in dementia care were identified: the scarcity and low methodological quality of available studies, the difficulty of generalising from available evidence, the narrowness of cost measures, a reluctance to implement evidence and the poor coordination of health and social care provision and financing.
Topics: Cost-Benefit Analysis; Delivery of Health Care; Dementia; Health Care Costs; Humans; Preventive Health Services
PubMed: 22887331
DOI: 10.1002/gps.3864 -
The Cochrane Database of Systematic... May 2019Periodontal (gum) disease and dental caries (tooth decay) are the most common causes of tooth loss; dental plaque plays a major role in the development of these...
BACKGROUND
Periodontal (gum) disease and dental caries (tooth decay) are the most common causes of tooth loss; dental plaque plays a major role in the development of these diseases. Effective oral hygiene involves removing dental plaque, for example, by regular toothbrushing. People with intellectual disabilities (ID) can have poor oral hygiene and oral health outcomes.
OBJECTIVES
To assess the effects (benefits and harms) of oral hygiene interventions, specifically the mechanical removal of plaque, for people with intellectual disabilities (ID).
SEARCH METHODS
Cochrane Oral Health's Information Specialist searched the following databases to 4 February 2019: Cochrane Oral Health's Trials Register, the Cochrane Central Register of Controlled Trials (CENTRAL; Cochrane Register of Studies), MEDLINE Ovid, Embase Ovid and PsycINFO Ovid. ClinicalTrials.gov and the World Health Organization International Clinical Trials Registry Platform were searched for ongoing trials. The Embase search was restricted by date due to the Cochrane Centralised Search Project, which makes available clinical trials indexed in Embase through CENTRAL. We handsearched specialist conference abstracts from the International Association of Disability and Oral Health (2006 to 2016).
SELECTION CRITERIA
We included randomised controlled trials (RCTs) and some types of non-randomised studies (NRS) (non-RCTs, controlled before-after studies, interrupted time series studies and repeated measures studies) that evaluated oral hygiene interventions targeted at people with ID or their carers, or both. We used the definition of ID in the International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10). We defined oral hygiene as the mechanical removal of plaque. We excluded studies that evaluated chemical removal of plaque, or mechanical and chemical removal of plaque combined.
DATA COLLECTION AND ANALYSIS
At least two review authors independently screened search records, identified relevant studies, extracted data, assessed risk of bias and judged the certainty of the evidence according to GRADE criteria. We contacted study authors for additional information if required. We reported RCTs and NRSs separately.
MAIN RESULTS
We included 19 RCTs and 15 NRSs involving 1795 adults and children with ID and 354 carers. Interventions evaluated were: special manual toothbrushes, electric toothbrushes, oral hygiene training, scheduled dental visits plus supervised toothbrushing, discussion of clinical photographs showing plaque, varied frequency of toothbrushing, plaque-disclosing agents and individualised care plans. We categorised results as short (six weeks or less), medium (between six weeks and 12 months) and long term (more than 12 months).Most studies were small; all were at overall high or unclear risk of bias. None of the studies reported quality of life or dental caries. We present below the evidence available from RCTs (or NRS if the comparison had no RCTs) for gingival health (inflammation and plaque) and adverse effects, as well as knowledge and behaviour outcomes for the training studies.Very low-certainty evidence suggested a special manual toothbrush (the Superbrush) reduced gingival inflammation (GI), and possibly plaque, more than a conventional toothbrush in the medium term (GI: mean difference (MD) -12.40, 95% CI -24.31 to -0.49; plaque: MD -0.44, 95% CI -0.93 to 0.05; 1 RCT, 18 participants); brushing was carried out by the carers. In the short term, neither toothbrush showed superiority (GI: MD -0.10, 95% CI -0.77 to 0.57; plaque: MD 0.20, 95% CI -0.45 to 0.85; 1 RCT, 25 participants; low- to very low-certainty evidence).Moderate- and low-certainty evidence found no difference between electric and manual toothbrushes for reducing GI or plaque, respectively, in the medium term (GI: MD 0.02, 95% CI -0.06 to 0.09; plaque: standardised mean difference 0.29, 95% CI -0.07 to 0.65; 2 RCTs, 120 participants). Short-term findings were inconsistent (4 RCTs; low- to very low-certainty evidence).Low-certainty evidence suggested training carers in oral hygiene care had no detectable effect on levels of GI or plaque in the medium term (GI: MD -0.09, 95% CI -0.63 to 0.45; plaque: MD -0.07, 95% CI -0.26 to 0.13; 2 RCTs, 99 participants). Low-certainty evidence suggested oral hygiene knowledge of carers was better in the medium term after training (MD 0.69, 95% CI 0.31 to 1.06; 2 RCTs, 189 participants); this was not found in the short term, and results for changes in behaviour, attitude and self-efficacy were mixed.One RCT (10 participants) found that training people with ID in oral hygiene care reduced plaque but not GI in the short term (GI: MD -0.28, 95% CI -0.90 to 0.34; plaque: MD -0.47, 95% CI -0.92 to -0.02; very low-certainty evidence).One RCT (304 participants) found that scheduled dental recall visits (at 1-, 3- or 6-month intervals) plus supervised daily toothbrushing were more likely than usual care to reduce GI (pocketing but not bleeding) and plaque in the long term (low-certainty evidence).One RCT (29 participants) found that motivating people with ID about oral hygiene by discussing photographs of their teeth with plaque highlighted by a plaque-disclosing agent, did not reduce plaque in the medium term (very low-certainty evidence).One RCT (80 participants) found daily toothbrushing by dental students was more effective for reducing plaque in people with ID than once- or twice-weekly toothbrushing in the short term (low-certainty evidence).A benefit to gingival health was found by one NRS that evaluated toothpaste with a plaque-disclosing agent and one that evaluated individualised oral care plans (very low-certainty evidence).Most studies did not report adverse effects; of those that did, only one study considered them as a formal outcome. Some studies reported participant difficulties using the electric or special manual toothbrushes.
AUTHORS' CONCLUSIONS
Although some oral hygiene interventions for people with ID show benefits, the clinical importance of these benefits is unclear. The evidence is mainly low or very low certainty. Moderate-certainty evidence was available for only one finding: electric and manual toothbrushes were similarly effective for reducing gingival inflammation in people with ID in the medium term. Larger, higher-quality RCTs are recommended to endorse or refute the findings of this review. In the meantime, oral hygiene care and advice should be based on professional expertise and the needs and preferences of the individual with ID and their carers.
Topics: Dental Plaque; Humans; Intellectual Disability; Oral Health; Oral Hygiene; Periodontal Diseases; Toothbrushing
PubMed: 31149734
DOI: 10.1002/14651858.CD012628.pub2 -
The Cochrane Database of Systematic... 2004Caring for someone with dementia can be emotionally and physically demanding. Respite care is any intervention designed to give rest or relief to caregivers. It is not... (Review)
Review
BACKGROUND
Caring for someone with dementia can be emotionally and physically demanding. Respite care is any intervention designed to give rest or relief to caregivers. It is not clear what positive and negative effects the provision of respite care may have on people with dementia and their caregivers.
OBJECTIVES
To assess the effects of respite care for people with dementia and their caregivers, in particular the effect of respite care on rates of institutionalization.
SEARCH STRATEGY
The trials were identified from a last updated search of the Cochrane Dementia and Cognitive Improvement Group's Specialized Register on 2 July 2003 using the terms respite* and "day care". This Register contains up to date records from all major health care databases and many ongoing trial databases.
SELECTION CRITERIA
Randomized controlled trials comparing respite care with a control intervention for people with dementia.
DATA COLLECTION AND ANALYSIS
Both reviewers carried out study selection independently and reached a consensus through discussion. Data was extracted by a single reviewer. The reviewers contacted all investigators for methodological details not reported in the text and for additional data.
MAIN RESULTS
Three trials were included in the review. They were different in many ways including intervention, duration and outcomes so pooling of data was not possible. Re-analysis of outcomes using data from the published studies found no significant effects of respite care on any variable.
REVIEWERS' CONCLUSIONS
Current evidence does not demonstrate any benefits or adverse effects from the use of respite care for people with dementia or their caregivers. These results should be treated with caution, however, as they may reflect the lack of high quality research in this area rather than an actual lack of benefit. Given the frequency with which respite care is advocated and provided, well-designed trials in this area are needed.
Topics: Aged; Caregivers; Dementia; Humans; Respite Care
PubMed: 15106250
DOI: 10.1002/14651858.CD004396.pub2 -
International Journal of Geriatric... Dec 2016Supporting informal caregivers of persons with dementia is considered to be an effective strategy for improving the well-being of caregivers and care recipients and for... (Review)
Review
OBJECTIVE
Supporting informal caregivers of persons with dementia is considered to be an effective strategy for improving the well-being of caregivers and care recipients and for delaying nursing home placement. Although considerable research has been conducted to investigate the effectiveness of psychoeducational interventions, cognitive behavioral therapy, and occupational therapy, research into the effectiveness of respite care is rare. This systematic review aims to investigate the effectiveness of different types of respite care in supporting informal caregivers of persons with dementia.
METHODS
A systematic literature search was conducted using Web of Science and PubMed, and the Quality Assessment Tool for Quantitative Studies was used to assess the methodological quality. Randomized controlled trials, quasi-experimental studies, pretest-posttest studies without a control group, and cohort studies were included.
RESULTS
Seventeen papers met the inclusion criteria. Day care services are effective in decreasing caregiver burden and behavioral problems in persons with dementia, but they also accelerate time to nursing home admission. The results of temporary residential admission are rather mixed and show unexpected adverse effects on both caregivers and care recipients. High-quality comparable evidence on community-based respite care is still lacking, although earlier qualitative evidence indicated promising results.
CONCLUSION
Unlike in previous reviews, we were able to draw some conclusions about the effectiveness of some types of respite care. There is nonetheless still a need for new intervention studies measuring the impact of respite care, especially in-home respite care programs, on the caregiver, the care recipient, and health care resource utilization. Copyright © 2016 John Wiley & Sons, Ltd.
Topics: Adaptation, Psychological; Caregivers; Cognitive Behavioral Therapy; Cohort Studies; Dementia; Hospitalization; Humans; Randomized Controlled Trials as Topic; Respite Care
PubMed: 27245986
DOI: 10.1002/gps.4504 -
Health Technology Assessment... Apr 2007To review the evidence for different models of community-based respite care for frail older people and their carers, where the participant group included older people... (Review)
Review
OBJECTIVES
To review the evidence for different models of community-based respite care for frail older people and their carers, where the participant group included older people with frailty, disability, cancer or dementia. Where data permitted, subgroups of carers and care recipients, for whom respite care is particularly effective or cost-effective, were to be identified.
DATA SOURCES
Major databases were searched from 1980 to March 2005. Ongoing and recently completed research databases were searched in July 2005.
REVIEW METHODS
Data from relevant studies were extracted and quality assessed. The possible effects of study quality on the effectiveness data and review findings were discussed. Where sufficient clinically and statistically similar data were available, data were pooled using appropriate statistical techniques.
RESULTS
Twenty-two primary studies were included. Most of the evidence came from North America, with a minority of effectiveness and economic studies based in the UK. Types of service studied included day care, host family, in-home, institutional and video respite. Effectiveness evidence suggests that the consequences of respite upon carers and care recipients are generally small, with better controlled studies finding modest benefits only for certain subgroups. However, many studies report high levels of carer satisfaction. No reliable evidence was found that respite can delay entry to residential care or that respite adversely affects care recipients. Randomisation validity in the included randomised studies was sometimes unclear. Studies reported many different outcome measures, and all of the quasi-experimental and uncontrolled studies had methodological weaknesses. The descriptions of the studies did not provide sufficient detail of the methods of data collection or analysis, and the studies failed to describe adequately the groups of study participants. In some studies, only evidence to support respite care services was presented, rather than a balanced view of the services. Only five economic evaluations of respite care services were found, all of which compared day care with usual care and only one study was undertaken in the UK. Day care tended to be associated with higher costs and either similar or a slight increase in benefits, relative to usual care. The economic evaluations were based on two randomised and three quasi-experimental studies, all of which were included in the effectiveness analysis. The majority of studies assessed health and social service use and cost, but inadequate reporting limits the potential for exploring applicability to the UK setting. No study included generic health-related quality of life measures, making cost-effectiveness comparisons with other healthcare programmes difficult. One study used sensitivity analysis to explore the robustness of the findings.
CONCLUSIONS
The literature review provides some evidence that respite for carers of frail elderly people may have a small positive effect upon carers in terms of burden and mental or physical health. Carers were generally very satisfied with respite. No reliable evidence was found that respite either benefits or adversely affects care recipients, or that it delays entry to residential care. Economic evidence suggests that day care is at least as costly as usual care. Pilot studies are needed to inform full-scale studies of respite in the UK.
Topics: Aged, 80 and over; Caregivers; Cost-Benefit Analysis; Female; Frail Elderly; Health Policy; Health Services for the Aged; Humans; Male; Middle Aged; Respite Care; United Kingdom
PubMed: 17459263
DOI: 10.3310/hta11150 -
BMC Pediatrics May 2020Population prevalence estimates by the World Health Organisation suggest that 1 in 160 children worldwide has an Autism Spectrum Disorder (ASD). Accessing respite care...
BACKGROUND
Population prevalence estimates by the World Health Organisation suggest that 1 in 160 children worldwide has an Autism Spectrum Disorder (ASD). Accessing respite care services for children with an ASD can often be a daunting and exhaustive process, with parents sometimes forced to access acute hospital services as an initial point of contact for respite care or in a crisis situation. To gain an in-depth understanding of accessing respite care for children with an ASD, from the perspectives of parents, a systematic review of the evidence on parent's experiences and views of respite care for children with an ASD at the acute and primary interface was undertaken.
METHODS
Pubmed, Embase, CINAHL and PsycINFO were systematically searched. Studies identified as relevant based on predetermined eligibility criteria were selected for inclusion. The search strategy also targeted unpublished studies and grey literature. Qualitative data and qualitative components of mixed method studies that represented the experiences of parents accessing respite care for children with an ASD were eligible for inclusion. A meta-aggregative approach was used during data synthesis.
RESULTS
Database searching elicited 430 records of which 291 studies remained after removal of duplicates. These 291 studies were screened for title and abstract by two reviewers resulting in 31 studies to be screened at full text and assessed for eligibility. Six studies met the inclusion criteria and a further additional study also met the inclusion criteria during a manual search. As a result, 7 studies were selected for the review as set out in Fig. 1.
CONCLUSION
In the absence of appropriate services and defined pathways to support services such as respite care, overwhelmed parents and community providers of mental health resources may not be in a position to meet the specific needs of children with an ASD and their families which may be contributing to a direct increase in hospitalizations. This systematic review identified a number of barriers to respite care, of which the findings can be used to inform future service development and further research. Knowledge of parental experiences in caring for a child with an ASD is vital in addressing the need and type of respite care required for children with an ASD.
SYSTEMATIC REVIEW REGISTRATION
PROSPERO CRD42018106629.
Topics: Autism Spectrum Disorder; Child; Humans; Mental Health; Parents; Primary Health Care; Respite Care
PubMed: 32443974
DOI: 10.1186/s12887-020-02045-5 -
Health Policy (Amsterdam, Netherlands) Mar 2021Internationally, deinstitutionalization and the provision of community-based care are growing policy aims. Several developed countries have thus introduced cash-for-care... (Review)
Review
BACKGROUND
Internationally, deinstitutionalization and the provision of community-based care are growing policy aims. Several developed countries have thus introduced cash-for-care schemes, which turn the traditional funding stream from the perspective of the care provider around, giving purchasing power to care users. This review explores whether cash-for-care schemes encourage the shift towards deinstitutionalization.
METHODS
Ten databases covering medical, nursing and social science journals were systematically screened up to July 10, 2020. Only peer-reviewed articles written in English or French and containing empirical evidence on the uptake of care services in a cash-for-care scheme were included.
RESULTS
The search resulted in 6,865 hits of which 27 articles were retained. Most studies took place in the United Kingdom or the United States. Overall, the search showed mixed results concerning the uptake of the different types of community-based care.
CONCLUSION
Evidence demonstrating a higher uptake of informal, respite or home care individually, is scarce and inconclusive. A reduction in residential care and an uptake of services in the community can, with caution, be noted. However, contextual and individual factors can affect the way deinstitutionalization takes place and which community-based services are chosen. Future research should therefore focus on the underlying processes and influencing factors, in order to obtain a clear view of the shift towards deinstitutionalization.
Topics: Delivery of Health Care; Home Care Services; Humans; United Kingdom; United States
PubMed: 33423802
DOI: 10.1016/j.healthpol.2020.11.002