Self-Management of Dementia by Family Carers: A Scoping Review.
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ABSTRACT:
SUBMITTER: Shehadeh A
PROVIDER: S-EPMC8142234 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Backgroundpeople with dementia or mild cognitive impairment (MCI) and their family carers face challenges in managing medicines. How medicine self-management could be supported for this population is unclear. This review identifies interventions to improve medicine self-management for people with dementia and MCI and their family carers, and the core components of medicine self-management that they address.Methodsa database search was conducted for studies with all research designs and ongoing citation search from inception to December 2021. The selection criteria included community-dwelling people with dementia and MCI and their family carers, and interventions with a minimum of one medicine self-management component. The exclusion criteria were wrong population, not focusing on medicine management, incorrect medicine self-management components, not in English and wrong study design. The results are presented and analysed through narrative synthesis. The review is registered [PROSPERO (CRD42020213302)]. Quality assessment was carried out independently applying the QATSDD quality assessment tool.Results13 interventions were identified. Interventions primarily addressed adherence. A limited number focused on a wider range of medicine self-management components. Complex psychosocial interventions with frequent visits considered the person's knowledge and understanding, supply management, monitoring effects and side effects and communicating with healthcare professionals, and addressed more resilience capabilities. However, these interventions were delivered to family carers alone. None of the interventions described patient and public involvement.Conclusioninterventions, and measures to assess self-management, need to be developed which can address all components of medicine self-management to better meet the needs of people with dementia and MCI and their family carers.
| S-EPMC9154223 | biostudies-literature
Project description:ObjectivesCarer's self-initiated management strategies of behavioural and psychological symptoms of dementia (BPSD) can inform intervention development. These strategies are affected by cultural values. Little is known about non-Western dementia carers' BPSD management strategies. This study aimed to explore self-initiated strategies in managing BPSD adopted by Chinese carers.DesignQualitative study using thematic framework method.SettingCommunity setting in Hong Kong.Participants16 dementia carers with purposive sampling to include carers of different relationships to the people living with dementia (PLwD), education level and living arrangement.ResultsSix overarching themes emerged from the data: (1) maintaining personhood in PLwD, (2) responding positively to BPSD, (3) explanation and bargaining, (4) responding negatively to BPSD, (5) controlling upsetting thoughts, and (6) getting respite care. Chinese carers treasured warm and supportive family relationships. They identified and minimised triggers to alleviate BPSD. Some carers struggled with care tasks and reacted with confrontation and avoidance. Changing attitudes and getting social and emotional support were described to manage carers' distress. Few self-care strategies including getting respite care were reported.ConclusionsCarers' self-initiated strategies largely aligned with existing theoretical frameworks in BPSD management, such as person-centred approach, and echoed Asian culture, which advocates filial piety and supportive family relationships. While these cultural values encourage the engagement of people living with dementia in the normal process of family life, they may also prevent carers from taking time away from care. Interventions could support carers by enhancing their knowledge and skills in managing BPSD, providing social and emotional support, and providing guidance in self-care. Future cross-cultural research could explore factors contributing to how carers manage BPSD and how interventions could be culturally adapted to facilitate carers to apply learnt skills in daily practice and hence benefit the people living with dementia and carer population.
| S-EPMC8388289 | biostudies-literature
Project description:BACKGROUND:Physical activity has been cited as a potential symptomatic treatment option for people living with dementia. At present, much of the research concerning physical activity and dementia considers older adults, and there are several review articles summarising the evidence in this area. Less is known about physical activity for younger people with dementia, despite the marked differences in needs and preferences between the two groups. The aim of this scoping review is to systematically explore and critically appraise the current state of the evidence regarding physical activity for people with young-onset dementia and carers. METHODS:Several electronic databases (i.e. MEDLINE, SPORTDiscus, CINAHL, Cochrane Library, PsycINFO, Applied Social Sciences Index & Abstracts (ASSIA) and Scopus), grey literature (i.e. NICE Evidence Search (UK) and targeted international organisations e.g. Alzheimer's Society (UK), Age UK, Young Dementia UK, Alzheimer's Association (USA), Dementia Australia) and trial registries (i.e. UK Clinical Trials Gateway, International Clinical Trials Registry Platform and EU Clinical Trials Register) will be searched for published and unpublished evidence regarding physical activity for people with young-onset dementia and carers. Studies included in the review will be subjected to a narrative synthesis to explore similarities and differences, both within and between studies, to identify patterns and themes and to postulate explanations for research findings (e.g. how and why certain interventions or programmes have worked (or not); factors that might have influenced the findings ). DISCUSSION:This will be the first review to systematically explore and critically appraise the current state of the evidence regarding physical activity for people with young-onset dementia and carers. It is hoped that findings from this review will be used to inform the development of future physical activity interventions, to serve as a basis for consultation with key stakeholders and to identify appropriate outcome measures relevant to people with young-onset dementia and carers. SYSTEMATIC REVIEW REGISTRATION:At present, scoping reviews are not eligible for registration on the international prospective register of systematic reviews (i.e. PROSPERO).
| S-EPMC5827995 | biostudies-literature
Project description:BackgroundIncreasing numbers of family carers are providing informal care in community settings. This creates a number of challenges because family carers are at risk of poor physical and psychological health outcomes, with consequences both for themselves and those for whom they provide care. General Practitioners (GPs), who play a central role in community-based care, are ideally positioned to identify, assess, and signpost carers to supports. However, there is a significant gap in the literature in respect of appropriate guidance and resources to support them in this role.MethodsA scoping review was undertaken to examine clinical guidelines and recommendations for GPs to support them in their role with family carers. This involved a multidisciplinary team, in line with Arksey & O'Malley's framework, and entailed searches of ten peer-reviewed databases and grey literature between September-November 2020.ResultsThe searches yielded a total of 4,651 English language papers, 35 of which met the criteria for inclusion after removing duplicates, screening titles and abstracts, and performing full-text readings. Ten papers focused on resources/guidelines for GPs, twenty were research papers, three were review papers, one was a framework of quality markers for carer support, and one was an editorial. Data synthesis indicated that nine (90%) of the guidelines included some elements relating to the identification, assessment, and/or signposting of carers. Key strategies for identifying carers suggest that a whole practice approach is optimal, incorporating a role for the GP, practice staff, and for the use of appropriate supporting documentation. Important knowledge gaps were highlighted in respect of appropriate clinical assessment and evidence-based signposting pathways.ConclusionOur review addresses a significant gap in the literature by providing an important synthesis of current available evidence on clinical guidelines for GPs in supporting family carers, including strategies for identification, options for assessment and potential referral/signposting routes. However, there is a need for greater transparency of the existing evidence base as well as much more research to evaluate the effectiveness and increase the routine utilisation, of clinical guidelines in primary care.
| S-EPMC10626724 | biostudies-literature
Project description:This study aimed to (1) identify generic questionnaires that measure self-management in people with chronic conditions, (2) describe their characteristics, (3) describe their development and theoretical foundations, and (4) identify categories of self-management strategies they assessed. This scoping review was based on the methodological framework developed by Arksey and O'Malley and completed by Levac et al. A thematic analysis was used to examine self-management strategies assessed by the questionnaires published between 1976 and 2019. A total of 21 articles on 10 generic, self-reported questionnaires were identified. The questionnaires were developed using various theoretical foundations. The Patient Assessment of Self-Management Tasks and Partners in Health scale questionnaires possessed characteristics that made them suitable for use in clinical and research settings and for evaluating all categories of self-management strategies. This study provides clinicians and researchers with an overview of generic, self-reported questionnaires and highlights some of their practical characteristics.
| S-EPMC8216317 | biostudies-literature
Project description:The prevalence of dementia is increasing with the ever-growing population of older adults. Non-pharmacological, music-based interventions, including sensory stimulation, were reported by the Lancet Commission in 2020 to be the first-choice approach for managing the behavioural and psychological symptoms of dementia. Low frequency sinusoidal vibration interventions, related to music interventions through their core characteristics, may offer relief for these symptoms. Despite increasing attention on the effectiveness of auditory music interventions and music therapy for managing dementia, this has not included low frequency vibration. This scoping review, following the JBI methodology guidelines, was conducted to investigate participants' responses to both sound and mechanical vibration, the characteristics of the delivered interventions, methodological challenges, and the specifics of the research experiments reported. An extensive search was conducted in BMC, CINAHL, Cochrane Central Register of Controlled Trials, EMBASE, ERIC, MEDLINE (OvidSP), Pedro, ProQuest Central, PsycINFO, Scopus, and Web of Science. Current Controlled Trials, Clinical Trials, and Google Scholar were also searched as well as a hand search in relevant journals. Studies on adults with all types of dementia, investigating tactile low frequency sound or mechanical vibration in any context were considered. Data from eight full-length studies (three RCTs, two quasi-experimental, two case reports, and one qualitative) were extracted using the data extraction table developed by the authors and were included in the analysis and critical appraisal. Issues in quality related to, for example, control groups and blinding. Few studies addressed participants' subjective responses to the interventions. Reporting on the intervention characteristics was unclear. It appeared more frequent sessions led to better outcomes and home-based interventions potentially addressing the issue of access and feasibility. Future research should include neuroimaging to measure and confirm the hypothesised mechanism of cerebral coherence. Standardised reporting of intervention characteristics is also needed to ensure replicability of the experiments. Higher quality research is needed to investigate the impact and effect of low frequency vibration for the symptoms of dementia and compare outcomes in meta-syntheses.
| S-EPMC9252598 | biostudies-literature
Project description:The majority of people living with dementia are cared for by their families. Family carers play a vital role in upholding the formal care system. Caring for a family member with dementia can be fulfilling. However, this role can have a considerable negative impact on family carers' mental and physical health and quality of life. Several empirical research studies have recently been conducted that explore the potential benefits of music interventions for family carers of people living with dementia. Singing has been the primary musical medium employed. This article presents the first review of this literature to date. It investigates the impact of music interventions on the health and well-being of family carers of people living with dementia, and how they experience and perceive these interventions. Whittemore and Knafl's five-stage integrative review framework was utilized: (i) problem identification; (ii) literature search; (iii) data evaluation; (iv) data analysis and synthesis; and (v) presentation of the findings. A total of 33 studies met the inclusion criteria. Analysis and synthesis resulted in three overarching themes: impact on family carers, carer perceptions of music interventions and null quantitative findings in small studies. The review found that singing and music interventions may improve family carers' social and emotional well-being, enhance their ability to cope and care and ameliorate the caring relationship, contributing to experiences of flourishing. However, it highlighted that this area is under-researched and pointed to the need for larger, more rigorous studies.
| S-EPMC9162174 | biostudies-literature
Project description:BackgroundStroke is a principal cause of mortality and disability globally. Numerous studies have contributed to the knowledge base regarding self-management interventions among chronic disease patients, but there are few such studies for patients with stroke. Therefore, it is necessary to analyze self-management interventions among stroke patients. This scoping review aimed to systematically identify and describe randomized controlled trials (RCTs) of self-management interventions for adults with stroke.MethodsA review team carried out a scoping review on stroke and self-management interventions based on the methodology of Arksey and O'Malley, following the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). PubMed, Embase, Web of Science, CINAHL Plus Full Text, Medline Plus Full Text, and Cochrane Central Register of Controlled Trials were searched from inception to July 2020.ResultsFifty-four RCTs were included. The most popular study design is comparing a self-management intervention to usual care or waitlist control condition. Physical activity is the most common intervention topic, and interventions were mainly delivered face to face. The majority of interventions were located in inpatient and multiple settings. Interventions were conducted by various providers, with nurses the most common provider group. Symptom management was the most frequently reported outcome domain that improved.ConclusionsSelf-management interventions benefit the symptom management of stroke patients a lot. The reasonable time for intervention is at least 6-12 months. Multifarious intervention topics, delivery formats, and providers are adopted mostly to meet the multiple needs of this population. Physical activity was the most popular topic currently. Studies comparing the effect of different types of self-management interventions are required in the future.
| S-EPMC8413126 | biostudies-literature
Project description:The ongoing rise in the numbers of chronically ill people necessitates efforts for effective self-management. Goal setting and action planning are frequently used, as they are thought to support patients in changing their behavior. However, it remains unclear how goal setting and action planning in the context of self-management are defined in the scientific literature. This study aimed to achieve a better understanding of the various definitions used.A scoping review was conducted, searching PubMed, Cinahl, PsychINFO and Cochrane. Inclusion and exclusion criteria were formulated to ensure the focus on goal setting/action planning and self-management. The literature was updated to December 2015; data selection and charting was done by two reviewers. A qualitative content analysis approach was used.Out of 9115 retrieved articles, 58 met the inclusion criteria. We created an overview of goal setting phases that were applied (preparation, formulation of goals, formulation of action plan, coping planning and follow-up). Although the phases we found are in accordance with commonly known frameworks for goal setting, it was striking that the majority of studies (n = 39, 67%) did not include all phases. We also prepared an overview of components and strategies for each goal setting phase. Interestingly, few strategies were found for the communication between patients and professionals about goals/action plans. Most studies (n = 35, 60%) focused goal setting on one single disease and on a predefined lifestyle behavior; nearly half of the articles (n = 27, 47%) reported a theoretical framework.The results might provide practical support for developers of interventions. Moreover, our results might encourage professionals to become more aware of the phases of the goal setting process and of strategies emphasizing on patient reflection. However, more research might be useful to examine strategies to facilitate communication about goals/action plans. It might also be worthwhile to develop and evaluate goal setting/action planning strategies for people with different and multiple chronic conditions.
| S-EPMC5703565 | biostudies-literature
Project description:BackgroundThere is growing interest in enhancing stroke self-management support using mobile health (mHealth) technology (eg, smartphones and apps). Despite this growing interest, "self-management support" is inconsistently defined and applied in the poststroke mHealth intervention literature, which limits efforts to synthesize and compare evidence. To address this gap in conceptual clarity, a scoping review was conducted.ObjectiveThe objectives were to (1) identify and describe the types of poststroke mHealth interventions evaluated using a randomized controlled trial design, (2) determine whether (and how) such interventions align with well-accepted conceptualizations of self-management support (the theory by Lorig and Holman and the Practical Reviews in Self-Management Support [PRISMS] taxonomy by Pearce and colleagues), and (3) identify the mHealth functions that facilitate self-management.MethodsA scoping review was conducted according to the methodology by Arksey and O'Malley and Levac et al. In total, 7 databases were searched. Article screening and data extraction were performed by 2 reviewers. The data were analyzed using descriptive statistics and content analysis.ResultsA total of 29 studies (26 interventions) were included. The interventions addressed 7 focal areas (physical exercise, risk factor management, linguistic exercise, activities of daily living training, medication adherence, stroke education, and weight management), 5 types of mobile devices (mobile phones or smartphones, tablets, wearable sensors, wireless monitoring devices, and laptops), and 7 mHealth functions (educating, communicating, goal setting, monitoring, providing feedback, reminding, and motivating). Collectively, the interventions aligned well with the concept of self-management support. However, on an individual basis (per intervention), the alignment was less strong.ConclusionsOn the basis of the results, it is recommended that future research on poststroke mHealth interventions be more theoretically driven, more multidisciplinary, and larger in scale.
| S-EPMC10733834 | biostudies-literature