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Are physiotherapists employing person-centred care for people with dementia? An exploratory qualitative study examining the experiences of people with dementia and their carers.

ABSTRACT: 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.

SUBMITTER: Hall AJ

PROVIDER: S-EPMC5834867 | biostudies-other | 2018 Mar

REPOSITORIES: biostudies-other

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Are physiotherapists employing person-centred care for people with dementia? An exploratory qualitative study examining the experiences of people with dementia and their carers.

Hall Abigail J AJ Burrows Lisa L Lang Iain A IA Endacott Ruth R Goodwin Victoria A VA

BMC geriatrics 20180302 1

<h4>Background</h4>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 p ...[more]

PMID: 29499661

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Project description:BackgroundThere is great need for development of feasible rehabilitation for older people with dementia. Increased understanding of this population's experiences of rehabilitation participation is therefore important. The aim of this study was to explore the experiences of community-dwelling older people with dementia participating in a person-centred multidimensional interdisciplinary rehabilitation program.MethodsSixteen older people with dementia were interviewed about their experiences of participation in a person-centred multidimensional interdisciplinary rehabilitation program. The program comprised assessments by a comprehensive team of rehabilitation professionals followed by a rehabilitation period of 16 weeks, including interventions based on individualized rehabilitation goals conducted with the support of the rehabilitation team. The rehabilitation was performed in the participants' homes, in the community and at an outpatient clinic, including exercise with social interaction in small groups offered twice a week to all participants. The interviews were conducted at the end of the rehabilitation period and analysed with qualitative content analysis.ResultsThe analysis resulted in one overarching theme: Empowered through participation and togetherness and four sub-themes: Being strengthened through challenges; Gaining insights, motives, and raising concerns about the future; Being seen makes participation worthwhile; and Feelings of togetherness in prosperity and adversity. The participants increased their self-esteem by daring and coping in the rehabilitation. The insights about themselves and their condition motivated them to continue with their prioritized activities, but also raised concerns about how the future would play out. Collaboration in the group and being seen and acknowledged by staff strengthened their own motivation and self-efficacy.ConclusionAccording to community-dwelling older people with dementia, a person-centred multidimensional interdisciplinary rehabilitation program was experienced as viable and beneficial. The participants seemed empowered through the rehabilitation and expressed mostly positive experiences and perceived improvements. Providers of interdisciplinary rehabilitation programs for this group should consider aspects raised by the participants e.g. the positive experience of being challenged in both exercise and daily activities; the importance of being seen and feeling secure; the benefits and challenges of collaboration with others in the same situation; and the generation of new perspectives of current and future situation.

Project description:BACKGROUND:Agitation is a common, challenging symptom affecting large numbers of people with dementia and impacting on quality of life (QoL). There is an urgent need for evidence-based, cost-effective psychosocial interventions to improve these outcomes, particularly in the absence of safe, effective pharmacological therapies. This study aimed to evaluate the efficacy of a person-centred care and psychosocial intervention incorporating an antipsychotic review, WHELD, on QoL, agitation, and antipsychotic use in people with dementia living in nursing homes, and to determine its cost. METHODS AND FINDINGS:This was a randomised controlled cluster trial conducted between 1 January 2013 and 30 September 2015 that compared the WHELD intervention with treatment as usual (TAU) in people with dementia living in 69 UK nursing homes, using an intention to treat analysis. All nursing homes allocated to the intervention received staff training in person-centred care and social interaction and education regarding antipsychotic medications (antipsychotic review), followed by ongoing delivery through a care staff champion model. The primary outcome measure was QoL (DEMQOL-Proxy). Secondary outcomes were agitation (Cohen-Mansfield Agitation Inventory [CMAI]), neuropsychiatric symptoms (Neuropsychiatric Inventory-Nursing Home Version [NPI-NH]), antipsychotic use, global deterioration (Clinical Dementia Rating), mood (Cornell Scale for Depression in Dementia), unmet needs (Camberwell Assessment of Need for the Elderly), mortality, quality of interactions (Quality of Interactions Scale [QUIS]), pain (Abbey Pain Scale), and cost. Costs were calculated using cost function figures compared with usual costs. In all, 847 people were randomised to WHELD or TAU, of whom 553 completed the 9-month randomised controlled trial. The intervention conferred a statistically significant improvement in QoL (DEMQOL-Proxy Z score 2.82, p = 0.0042; mean difference 2.54, SEM 0.88; 95% CI 0.81, 4.28; Cohen's D effect size 0.24). There were also statistically significant benefits in agitation (CMAI Z score 2.68, p = 0.0076; mean difference 4.27, SEM 1.59; 95% CI -7.39, -1.15; Cohen's D 0.23) and overall neuropsychiatric symptoms (NPI-NH Z score 3.52, p < 0.001; mean difference 4.55, SEM 1.28; 95% CI -7.07,-2.02; Cohen's D 0.30). Benefits were greatest in people with moderately severe dementia. There was a statistically significant benefit in positive care interactions as measured by QUIS (19.7% increase, SEM 8.94; 95% CI 2.12, 37.16, p = 0.03; Cohen's D 0.55). There were no statistically significant differences between WHELD and TAU for the other outcomes. A sensitivity analysis using a pre-specified imputation model confirmed statistically significant benefits in DEMQOL-Proxy, CMAI, and NPI-NH outcomes with the WHELD intervention. Antipsychotic drug use was at a low stable level in both treatment groups, and the intervention did not reduce use. The WHELD intervention reduced cost compared to TAU, and the benefits achieved were therefore associated with a cost saving. The main limitation was that antipsychotic review was based on augmenting processes within care homes to trigger medical review and did not in this study involve proactive primary care education. An additional limitation was the inherent challenge of assessing QoL in this patient group. CONCLUSIONS:These findings suggest that the WHELD intervention confers benefits in terms of QoL, agitation, and neuropsychiatric symptoms, albeit with relatively small effect sizes, as well as cost saving in a model that can readily be implemented in nursing homes. Future work should consider how to facilitate sustainability of the intervention in this setting. TRIAL REGISTRATION:ISRCTN Registry ISRCTN62237498.

Project description:BackgroundAssistive Technology (AT) supports persons with dementia and their carers (family, friends and neighbours), yet little is known about experiences and the impact of AT on carers. We report on an exploratory survey that examined the types, uses, costs and impact of AT on carers as well as their quality of life.MethodsA cross-sectional survey using the Carers Assistive Technology Experience Questionnaire collected data from carers in the UK, who used at least one AT in the previous year and provided more than 10 h of care for a person with dementia, living at home. Carers completed the questionnaire online or on paper and information on AT, socio-demographic details, and Short-Form Health Survey (SF-12) data were collected. Descriptive and inferential statistics were used to report results and draw conclusions.ResultsData from 201 carers was analysed. Smartphones and tablet computers were the most frequently used AT. AT were used predominantly for safety, communication, and reminders. Carers usually make decisions on buying and continued use of AT. Multiple AT devices were used in the care of persons with dementia and number of AT used was associated with perceived satisfaction. Satisfaction with AT was not related to age, living arrangements and relationship of carers. From the SF-12, Mean Physical Component Score was 49.19 (95%CI- 47.75 to 50.63) and Mental Component Score was 45.37 (95%CI- 43.93 to 46.80). Women, carers in the 46-65 age group and carers who were not extremely satisfied with AT had lower MCS scores. Carers who lived with the person with dementia and older carers had lower PCS scores.ConclusionsCarers report that AT has a beneficial impact. Carers use multiple ATs, perceive AT to be satisfactory and recommend AT use to others. To support carers, we recommend establishment of centrally funded information sources and a loan store for AT. Further research on incremental addition of AT and changes to formal/paid care because of using AT should be undertaken. Practitioners, academics, manufactures and policy makers should consider the experiences of carers in research, development and use of AT to facilitate improved community living of people with dementia.

Project description:AimsFamily carers supporting an individual with psychosis often experience poorer mental health, however, little is known about specific risk factors among these carers. We investigated the associations between demographic, caregiving characteristics and mental health outcomes in family carers supporting an individual with psychosis and compared carers' outcomes with general population norms.MethodsWe analysed baseline data from the COPe-support randomised controlled trial of online psychoeducation and peer support for adult carers supporting an individual with psychosis between 2018 and 2020. We collected carers' demographic and health outcome data, including wellbeing using Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS as primary outcome), quality of life using EQ-5D-5L and caregiving experience assessed with Experience of Caregiving Inventory. We tested associations between carers' demographic and caregiving characteristics for each outcome in turn and meta-analysed carers' WEMWBS and EQ-5D-5L with Health Survey England (HSE) general population data from 2016 and 2017, respectively.ResultsThe 407 carers of people with psychosis had a mean WEMWBS score of 42.2 (s.d. 9.21) and their overall weighted pooled WEMWBS score was 7.3 (95% confidence interval (CI) -8.6 to -6.0, p < 0.01) lower than the HSE general population sample, indicating carers have poorer mental wellbeing by more than double the minimum clinically important difference of 3 points on WEMWBS. Among all caring relationships, partners had poorer wellbeing compared to parents with lower WEMWBS score (-6.8, -16.9 to 3.3, p = 0.03). Single carers had significantly poorer wellbeing (-3.6, -5.6 to -1.5, p < 0.01) and a more negative caregiving experience than those who were cohabiting. Spending more than 35 h per week caregiving increased carers' negative experience significantly (p = 0.01).ConclusionCarers of people with psychosis have poorer mental health than non-carers. Partners, lone carers and those spending more than 35 h per week on caring were found to be most at risk of poor mental health. Based on the results, we advocate that the details of carers for individuals with psychosis should be added to the existing carers or severe mental illness registers at all general practitioner surgeries and for their wellbeing screened routinely. Future large-scale prospective studies are needed to develop a predictive model to determine risk factors, hence to aid early identification of carers' support needs. Such understandings are also useful to inform tailored intervention development.

Dataset Information

Are physiotherapists employing person-centred care for people with dementia? An exploratory qualitative study examining the experiences of people with dementia and their carers.

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Are physiotherapists employing person-centred care for people with dementia? An exploratory qualitative study examining the experiences of people with dementia and their carers.

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