Efficacy and experiences of telephone counselling for informal carers of people with dementia.
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ABSTRACT:
SUBMITTER: Lins S
PROVIDER: S-EPMC7433299 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectiveCompared to late life dementia, Young Onset Dementia (YOD) has its own distinct challenges, including a lack of specialised and age-appropriate support services. Carers of people with YOD experience higher levels of psychological and physical symptoms, and lower quality of life. This study (RHAPSODY-Plus) assessed the acceptability and feasibility of combining RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young; a web-based information and skill-building programme for carers of people with YOD) with individually tailored support sessions with health professionals (a social worker and a clinical psychologist) provided via online videoconferencing.MethodsParticipants (n = 20) were informal carers aged over 18 years, who were caring for a person with YOD (either Alzheimer's disease or frontotemporal dementia type). Participants used the RHAPSODY programme for 4 weeks, then attended 2 support sessions. Participants and the health professionals then attended individual feedback sessions. Feedback was collected via open-ended and Likert-style questions.ResultsThe majority of carers rated the RHAPSODY-Plus programme as good to very good, demonstrating a high level of acceptability. Positive feedback about the programme included being able to receive personal advice additionally to the information provided in RHAPSODY. The healthcare professionals also thought the programme was acceptable and beneficial for access to support. Some limitations in the feasibility of videoconferencing included network and technical issues and the loss of non-verbal communication.ConclusionsThis online pilot study had a high level of acceptability, demonstrating the potential of an individualised multi-modal intervention for carers of people with YOD which offers opportunities to overcome geographical and service access barriers.
| S-EPMC9998420 | biostudies-literature
Project description:Exercise is effective in preventing falls among older adults. However, few studies have included people living with dementia and their carers and explored their experiences. The aim of this study is to explore what affects the acceptability of exercise interventions to better meet the needs of people with dementia and their carers as a dyad. Observations, field notes containing participant's and instructor's feedback, and focus groups with 10 dyads involved in Tai Chi classes for 3 or 4 weeks in two sites in the South of England were thematically analyzed to understand their experiences. Findings suggest that dyads' determination to achieve the benefits of Tai Chi facilitated their adherence, whereas a member of the dyad's low sense of efficacy performing the movements during classes was a barrier. Simplifying class content and enhancing the clarity of instructions for home-based practice will be key to support the design of future exercise interventions.
| S-EPMC6292494 | biostudies-literature
Project description:BackgroundThe prevalence of dementia is increasing, and there are many associated problems that family members face as informal carers, including emotional, physical, and financial difficulties. There are benefits for a person with dementia to live at home for as long as possible, and therefore, supporting their informal carers is crucial. The growing interest in supporting carers through internet-based interventions is evidenced by the volume of systematic reviews on this topic. It is now appropriate to systematically examine this body of work and provide an overview of the literature.ObjectiveThis umbrella review aimed to identify the most effective internet-based intervention content and delivery method to support those caring for someone with dementia living in the community.MethodsPsycINFO, Web of Science, CINAHL, MEDLINE, Cochrane Library, and PubMed were searched for systematic reviews examining the effectiveness of web-based interventions for informal carers of people with dementia. A total of 3 reviewers extracted data and evaluated the quality of the papers. To ascertain the extent to which the systematic reviews reported on the same evidence, the proportion of overlap between their included studies was calculated. Qualitative research findings were extracted and reported.ResultsA total of 21 papers were included in the study. The quality of the review papers was mainly rated as low to moderate, and 10% (2/21) of papers were of high quality. The findings suggest that multicomponent interventions were the most effective in supporting carers. These included combinations of cognitive behavioral therapy and relaxation strategies, educational resources, and online support groups. Interventions that were delivered on the web but included sessions with a personal element, such as telephone contact, showed the best results. When comparing the studies reviewed in all the review papers, a moderate overlap was noted. However, when comparing individual reviews with each other, they showed a high overlap of the included studies.ConclusionsMixed delivery methods and intervention content showed the most effective results in supporting those caring for people with dementia. However, many papers do not separate the results for differing intervention contents or delivery; this needs to be considered when drawing conclusions. There was an overlap among the studies included in the reviews. This suggests a lack of current research on the effectiveness of web-based interventions for people caring for a person with dementia. There was also a lack of consistency in the outcome measures across all papers. Future studies can involve updating research on the effectiveness of these interventions while distinguishing between different intervention types, thus creating guidelines for the use of standardized measures to enable comparisons of intervention effects and improve the scientific quality of the overall research.Trial registrationPROSPERO CRD42021241559; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=241559.
| S-EPMC9356334 | biostudies-literature
Project description:People with dementia may receive physiotherapy for a variety of reasons. This may be for musculoskeletal conditions or as a result of falls, fractures or mobility difficulties. While previous studies have sought to determine the effectiveness of physiotherapy interventions for people with dementia, little research has focused on the experiences of people receiving such treatment. The aim of this study was to gain an in-depth understanding of people's experiences of receiving physiotherapy and to explore these experiences in the context of principles of person-centred care.Semi-structured interviews were undertaken with people with dementia or their carers between September 2016 and January 2017. A purposive sampling strategy recruited participants with dementia from the South West of England who had recently received physiotherapy. We also recruited carers to explore their involvement in the intervention. Thematic analysis was used to analyse the data.A total of eleven participants were recruited to the study. Six people with dementia were interviewed and five interviews undertaken separately with carers of people with dementia. Three themes were identified. The first explores the factors that enable exercises to be undertaken successfully, the second deals with perceived resource pressures, and the final theme "the physiotherapy just vanished" explores the feeling of abandonment felt when goals and expectations of physiotherapy were not discussed. When mapped against the principles of person-centred care, our participants did not describe physiotherapy adopting such an approach.Lack of a person-centred care approach was evident by ineffective communication, thus failing to develop a shared understanding of the role and aims of physiotherapy. The incorporation of person-centred care may help reduce the frustration and feelings of dissatisfaction that some of our participants reported.
| S-EPMC5834867 | biostudies-other
Project description:BackgroundThe care of people with dementia is associated with enormous stress and, in a quarter of cases, leads to depression and anxiety disorders in the caring relatives. A specially designed inpatient psychosomatic rehabilitation (rehab) programme for family carers of people with dementia has proven to be effective but not sustainable. Therefore, the present study aims to increase the sustainability of the inpatient rehab programme by using thematically structured telephone aftercare group sessions.MethodsThe effectiveness of telephone aftercare groups was investigated in a randomized, controlled, prospective, mixed methods, longitudinal study. The aftercare intervention included social participation in monthly telephone group sessions for 6 months. The primary outcome was increased social participation of family carers, which, like the secondary outcomes (such as quality of life and subjective health), was assessed in written surveys at three or four measurement points.ResultsComplete data from 69 participants from the intervention group and from 72 participants from the control group could be evaluated. A small-sized reduction in restrictions on social participation was observed in the intervention group, whereas the reduction in the control group was negligible. The repeated-measures analysis of variance (ANOVA) showed sustained effects on the secondary outcomes, such as depression, perceived social support, and the mental health domain of quality of life of family carers, in favour of the intervention group. The results also showed that telephone-based aftercare groups had a rather minor influence on the use of support services. Except for those from family, friends and neighbours, existing support offers were hardly used.ConclusionTelephone aftercare group sessions for carers of people with dementia were not able to increase social participation at the expected magnitude. Nevertheless, the clear effects on selected secondary health-related outcomes and the assessment of the telephone-based group sessions by the participants show that the caring relatives were able to benefit greatly from this aftercare measure. Family carers should be informed more extensively about the corresponding resources and encouraged to use them. Overall, this new aftercare concept can be recommended for implementation, and its use also seems to be target-oriented for other indications.Clinical trial registrationGerman Clinical Trials Register: DRKS00013736 , 14/05/2018.
| S-EPMC8831098 | biostudies-literature
Project description:The objective of this study was to understand the experiences of people living with dementia and their informal carers' taking part together (in dyads) in Tai Chi classes and the aspects influencing their adherence. Dyads' experiences of taking part in Tai Chi classes for 20 weeks within the TACIT Trial were explored through class observations (n = 22 dyads), home-interviews (n = 15 dyads), and feedback. Data were inductively coded following thematic analysis. Tai Chi classes designed for people with dementia and their informal carers were enjoyable and its movements, easy to learn. Facilitators of participants' adherence were the socializing component and their enjoyment of the classes, whereas unexpected health problems were the main barrier. Finding the optimal level of challenge in the class setting might be crucial for people with dementia to feel satisfied with their progression over sessions and enable their continued participation.
| S-EPMC7611713 | biostudies-literature
Project description:BackgroundIn the UK, there are currently 800 000 people living with dementia. This number is expected to double in the next 20 years. Two-thirds of people with dementia live in the community supported by informal carers. Caring for a person with dementia has adverse effects on psychological, physical, social wellbeing and quality of life. The measurement of quality of life of carers of people with dementia is increasingly of interest to health and social care practitioners and commissioners, policymakers, and carers themselves. However, there is lack of consensus on the most suitable instrument(s) for undertaking this.MethodsA systematic review of the literature using COSMIN methodology. Searching of electronic databases (Medline, PsycINFO, CINAHL and Web of Science), reference list and citation searching of key papers was undertaken. COSMIN methodology was used to simultaneously extract data from and assess methodological quality of included studies, and make a recommendation for the instrument with the most high quality evidence for its measurement properties.ResultsTen instruments were suitable for inclusion in this review. The Carer well-being and support questionnaire (CWS) has the best quality evidence for the greatest number of measurement of properties. The Caregiver Well-Being Scale is also worthy of consideration. There is not presently a measure which could be recommended for use in economic evaluations, however the Impact of Alzheimer's Disease on the Caregiver questionnaire (IADCQ) could potentially be used following further investigation of its measurement properties in a representative population.ConclusionThe CWS is the most appropriate instrument to recommend for the assessment of quality of life in informal carers of people with dementia at present. All instruments included in this review would benefit from more rigorous evaluation of their measurement properties.
| S-EPMC5851581 | biostudies-literature
Project description:BackgroundInformal caregivers of people living with dementia experience a higher level of physical and mental stress compared with other types of caregivers. Psychoeducation programs are viewed as beneficial for building caregivers' knowledge and skills and for decreasing caregiver stress.ObjectiveThis review aimed to synthesize the experiences and perceptions of informal caregivers of people with dementia when participating in web-based psychoeducation programs and the factors that enable and impede informal caregivers' engagement in web-based psychoeducation programs.MethodsThis review followed the Joanna Briggs Institute protocol of systematic review and meta-aggregation of qualitative studies. We searched 4 English databases, 4 Chinese databases, and 1 Arabic database in July 2021.ResultsA total of 9 studies written in English were included in this review. From these studies, 87 findings were extracted and grouped into 20 categories. These categories were further synthesized into 5 findings: web-based learning as an empowering experience, peer support, satisfactory and unsatisfactory program content, satisfactory and unsatisfactory technical design, and challenges encountered in web-based learning.ConclusionsHigh-quality and carefully designed web-based psychoeducation programs offered positive experiences for informal caregivers of people living with dementia. To meet broader caregiver education and support needs, program developers should consider information quality and relevancy, the support offered, individual needs, flexibility in delivery, and connectedness between peers and program facilitators.
| S-EPMC10262022 | biostudies-literature
Project description:ObjectivesTo identify, critically appraise and synthesise the qualitative literature on the experiences of informal carers of people with long-term conditions during the COVID-19 pandemic.DesignA qualitative systematic literature review.Data sourcesEight electronic databases were systematically searched (Medline, Embase, CINAHL, PubMed, PsychINFO, Web of Science, Nursing and Allied Health and ASSIA) along with Google Scholar and handsearching via secondary sources.Study selectionEligible studies had to include the experiences of informal carers (adults who are 65 or older), use a qualitative methodology and had to be written in English.Data extraction and synthesisRetrieved papers were quality assessed using the Critical Appraisal Skills Programme qualitative checklist and ranked for quality. Thematic analysis was used to synthesise the findings.ResultsFourteen studies were included, all from medical or nursing journals (n = 5 specifically gerontology). Four main themes were identified: (i) fear, (ii) uncertainty, (iii) burden and (iv) staying connected. Caregiving demands have increased for carers during the pandemic, as well as negative emotions such as fear and uncertainty. At the same time, less social support has been available, leading to concerns about carers' wellbeing and ability to cope.ConclusionCarers' needs have been exacerbated by the COVID-19 pandemic. Greater practical and emotional support is needed for carers from both formal services and community sources that considers their changing needs and offers educational and emotional support for long-term wellbeing. Strengths and Limitations: (1) This is the first systematic review to explore in depth the experiences of informal carers caring for people with a range of long-term conditions and from an international context. (2) The review includes an analysis of the quality of the studies, as well as a study of their relative contributions. (3) Further research is needed to explore the physical, emotional and financial impact of the pandemic for bereaved carers which is not captured in this review due to the lack of empirical data available at the time of review.
| S-EPMC9603569 | biostudies-literature
Project description:There is an increasing prevalence of cancer in Africa with approximately 80% of cancers diagnosed at an advanced stage. High out-of-pocket healthcare costs and overstretched health systems lead to heavy reliance on informal carers for cancer care. This study aims to explore the roles and experiences of informal carers including the impact of cancer care on individuals and communities and support available for carers. We carried out a systematic review following PRISMA reporting guidelines and used critical interpretative synthesis to identify themes and develop an informal carers' experience framework. We searched nine databases and screened 8,123 articles from which 31 studies were included in the review. Most studies were from Sub-Saharan Africa (29/31, 94%), particularly Uganda (9, 29%). Carers were mostly women, aged 30-40 years, and siblings, spouses, or children. Caring roles included care coordination, fundraising, and emotional support. Caring was time-consuming with some carers reporting 121 hours/week of caring, associated with the inability to pursue paid work and depression. Four themes demonstrated carers' experiences: 1) intrapersonal factors: strong sense of familial obligation, and grappling with gender roles, 2) interpersonal factors: impact of a cancer diagnosis on households, changing social and sexual relationships, 3) community factors: navigating cultural norms on nature and location of care, and 4) health system influences: barriers to accessing healthcare services, and tensions between traditional and biomedical medicine. These themes aligned with Bronfenbrenner's social ecological model which aided our development of a framework for understanding informal carers' experiences'. Our review highlights multifaceted roles and experiences of informal carers in Africa, amidst cultural and community impacts. Carers experience a strong obligation and willingly undertake the role of carer, but at the expense of their social, economic, and psychological wellbeing. Support for carers, including flexible working hours/ carers' allowance, should be incorporated as part of universal health coverage.
| S-EPMC10081800 | biostudies-literature