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1.
PLoS Med ; 18(1): e1003433, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33395437

RESUMO

BACKGROUND: We aimed to estimate the clinical effectiveness of Community Occupational Therapy for people with dementia and family carers-UK version (Community Occupational Therapy in Dementia-UK version [COTiD-UK]) relative to treatment as usual (TAU). We hypothesised that COTiD-UK would improve the ability of people with dementia to perform activities of daily living (ADL), and family carers' sense of competence, compared with TAU. METHODS AND FINDINGS: The study design was a multicentre, 2-arm, parallel-group, assessor-masked, individually randomised controlled trial (RCT) with internal pilot. It was conducted in 15 sites across England from September 2014 to January 2018. People with a diagnosis of mild to moderate dementia living in their own home were recruited in pairs with a family carer who provided domestic or personal support for at least 4 hours per week. Pairs were randomised to either receive COTiD-UK, which comprised 10 hours of occupational therapy delivered over 10 weeks in the person with dementia's home or TAU, which comprised the usual local service provision that may or may not include standard occupational therapy. The primary outcome was the Bristol Activities of Daily Living Scale (BADLS) score at 26 weeks. Secondary outcomes for the person with dementia included the following: the BADLS scores at 52 and 78 weeks, cognition, quality of life, and mood; and for the family carer: sense of competence and mood; plus the number of social contacts and leisure activities for both partners. Participants were analysed by treatment allocated. A total of 468 pairs were recruited: people with dementia ranged from 55 to 97 years with a mean age of 78.6 and family carers ranged from 29 to 94 with a mean of 69.1 years. Of the people with dementia, 74.8% were married and 19.2% lived alone. Of the family carers, 72.6% were spouses, and 22.2% were adult children. On randomisation, 249 pairs were assigned to COTiD-UK (62% people with dementia and 23% carers were male) and 219 to TAU (52% people with dementia and 32% carers were male). At the 26 weeks follow-up, data were available for 364 pairs (77.8%). The BADLS score at 26 weeks did not differ significantly between groups (adjusted mean difference estimate 0.35, 95% CI -0.81 to 1.51; p = 0.55). Secondary outcomes did not differ between the groups. In total, 91% of the activity-based goals set by the pairs taking part in the COTiD-UK intervention were fully or partially achieved by the final COTiD-UK session. Study limitations include the following: Intervention fidelity was moderate but varied across and within sites, and the reliance on primarily proxy data focused on measuring the level of functional or cognitive impairment which may not truly reflect the actual performance and views of the person living with dementia. CONCLUSIONS: Providing community occupational therapy as delivered in this study did not improve ADL performance, cognition, quality of life, or mood in people with dementia nor sense of competence or mood in family carers. Future research should consider measuring person-centred outcomes that are more meaningful and closely aligned to participants' priorities, such as goal achievement or the quantity and quality of activity engagement and participation. TRIAL REGISTRATION: Current Controlled Trials ISRCTN10748953.


Assuntos
Cuidadores/psicologia , Demência/reabilitação , Família/psicologia , Serviços de Assistência Domiciliar/organização & administração , Terapia Ocupacional/métodos , Atividades Cotidianas , Adulto , Idoso , Idoso de 80 Anos ou mais , Inglaterra , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Qualidade de Vida , Método Simples-Cego
2.
Int J Geriatr Psychiatry ; 35(11): 1349-1357, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32608171

RESUMO

OBJECTIVES: Many people live with an awareness of mild cognitive changes that increase their dementia risk. Previous authors describe the uncertainties of this liminal state, between cognitive health and dementia, where being "at risk" can itself be an illness. We ask how services respond to people with memory concerns currently, and how a future, effective and inclusive dementia prevention intervention might be structured for people with memory concerns. METHODS/DESIGN: We conducted qualitative interviews with 18 people aged 60+ years with subjective or objective memory problems, six family members, 10 health and social care professionals and 11 third sector workers. Interviews were audio-recorded, transcribed and analysed using an inductive thematic approach. RESULTS: Three main themes were identified: (1) acknowledging the liminal state, compounded by current, discordant health service responses: medicalising memory concerns yet situating responsibilities for their management with patients and families; (2) enabling change in challenging contexts of physical and cognitive frailty and social disengagement and (3) building on existing values, cultures and routines. CONCLUSIONS: Effective dementia prevention must empower individuals to make lifestyle changes within challenging contexts. Programmes must be evidence based yet sufficiently flexible to allow new activities to be fitted into people's current lives; and mindful of the risks of pathologising memory concerns. Most current memory services are neither commissioned, financially or clinically resourced to support people with memory concerns without dementia. Effective, large scale dementia prevention will require a broad societal response.


Assuntos
Disfunção Cognitiva , Demência , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/prevenção & controle , Demência/diagnóstico , Demência/prevenção & controle , Família , Humanos , Estilo de Vida , Apoio Social
3.
Int J Geriatr Psychiatry ; 35(8): 811-819, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-31833588

RESUMO

BACKGROUND: Observational studies indicate that approximately a third of dementia cases are attributable to modifiable cardiometabolic, physical and mental health, and social and lifestyle risk factors. There is evidence that intensive behaviour change interventions targeting these factors can reduce cognitive decline. [Figure: see text] METHODS AND ANALYSIS: We will design and test a low intensity, secondary dementia-prevention programme (Active Prevention in People at risk of dementia: Lifestyle, bEhaviour change and Technology to REducE cognitive and functional decline, "APPLE-Tree") to slow cognitive decline in people with subjective cognitive decline with or without objective cognitive impairment. We will embed our work within social science research to understand how dementia prevention is currently delivered and structured. We will carry out systematic reviews and around 50 qualitative interviews with stakeholders, using findings to coproduce the APPLE-Tree intervention. We plan a 10-session group intervention, involving personalised goal-setting, with individual sessions for those unable or unwilling to attend groups, delivered by psychology assistants who will be trained and supervised by clinical psychologists. The coproduction group (including public and patient involvement [PPI], academic and clinical/third-sector professional representatives) will use the Behaviour Change Wheel theoretical framework to develop it. We will recruit and randomly allocate 704 participants, 1:1 to the intervention: informational control group. This sample size is sufficient to detect a between-group difference at 2 years of 0.15 on the primary outcome (cognition: modified neuropsychological test battery; 90% power, 5% significance, effect size 0.25, SD 0.6). DISSEMINATION: We will work with Public Health England and third-sector partners to produce an effective national implementation approach, so that if our intervention works, it is used in practice.


Assuntos
Demência , Malus , Cognição , Demência/prevenção & controle , Inglaterra , Humanos , Estilo de Vida , Tecnologia , Árvores
4.
Health Qual Life Outcomes ; 17(1): 44, 2019 Mar 11.
Artigo em Inglês | MEDLINE | ID: mdl-30866961

RESUMO

BACKGROUND: Family caregivers of people living with dementia can experience feelings of burden and stress but the concept of sense of coherence has been identified as an important protective trait against the negative impact of caregiving. Despite this, there has been no psychometric evaluation of the Sense of Coherence scale-13 with this population. Therefore, a psychometric evaluation was conducted using a mixed-methods approach. METHOD: Five hundred and eighty-three caregivers of people living with dementia participated in the study. We examined the feasibility, internal consistency, construct validity, floor and ceiling effects, concurrent validity and face validity of the Sense of Coherence scale-13. RESULTS: The Sense of Coherence scale-13 demonstrated adequate internal consistency. Sense of coherence was positively related to resilience, sense of competence and health related quality of life, demonstrating good concurrent validity. However, the face validity of the scale was assessed as poor. CONCLUSION: The sense of coherence scale performed well under psychometric evaluation however guidance for caregivers should be examined and revised to reflect feedback from caregivers who completed this study, which could lead to improved face validity for this scale. TRIAL REGISTRATION NUMBER: ISRCTN10748953 . Registered 18th September 2014.


Assuntos
Cuidadores/psicologia , Demência , Qualidade de Vida , Senso de Coerência , Idoso , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários/normas
5.
Int Psychogeriatr ; 31(6): 799-813, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30466499

RESUMO

ABSTRACTObjectives:Sense of competence defines a caregiver's feeling of being capable to manage the caregiving task and is an important clinical concept in the caregiving literature. The aim of this review was to identify the factors, both positive and negative, associated with a caregiver's perception of their sense of competence. DESIGN: A systematic review of the literature was conducted, retrieving both quantitative and qualitative papers from databases PsycINFO, CINAHL, EMBASE, and Medline. A quality assessment was conducted using the STROBE and CASP checklists, and the quality rating informed the inclusion of papers ensuring the evidence was robust. Narrative synthesis was employed to synthesize the findings and to generate an updated conceptual model of sense of competence. RESULTS: Seventeen papers were included in the review, all of which were moderate to high quality. These included 13 quantitative, three mixed-methods and one qualitative study. Factors associated with sense of competence included: behavioral and psychological symptoms of dementia (BPSD), caregiver depression, gratitude, and the ability to find meaning in caregiving. CONCLUSIONS: The results of this review demonstrate that both positive and negative aspects of caring are associated with caregiver sense of competence. Positive and negative aspects of caregiving act in tandem to influence caregiver perception of their competence. The proposed model of sense of competence aims to guide future research and clinical interventions aimed at improving this domain but requires further testing, as due to the observational nature of the include papers, the direction of causality could not be inferred.


Assuntos
Cuidadores/psicologia , Demência/enfermagem , Família , Estresse Psicológico , Adaptação Psicológica , Idoso , Humanos
6.
BMC Geriatr ; 19(1): 364, 2019 12 23.
Artigo em Inglês | MEDLINE | ID: mdl-31870306

RESUMO

BACKGROUND: Interpreting data about intervention effectiveness requires an understanding of which intervention components were delivered and whether they were delivered as planned (fidelity of delivery). These studies aimed to develop a reliable measure for assessing fidelity of delivery of the Community Occupational Therapy in Dementia-UK intervention (COTiD-UK) (Study 1) and measure fidelity of delivery of COTiD-UK across sessions, sites and occupational therapists (Study 2). METHODS: The studies used a longitudinal observational design nested within a multi-site randomised controlled trial. Where practicable, all intervention sessions were audio-recorded. Fidelity checklists and coding guidelines were developed, piloted and refined until good agreement was achieved between two coders. Ten percent of sessions were purposively sampled from 12 sites and 31 occupational therapists. Transcripts were coded using checklists developed in Study 1; 10% of sets of intervention session transcripts were double coded to ensure that agreement was maintained. Percentages of components that were delivered were calculated for each session, site and occupational therapist. RESULTS: A reliable measure of fidelity of delivery for COTiD-UK was developed after several rounds of piloting and amendments. COTiD-UK was delivered with moderate fidelity across all six sessions (range: 52.4-75.5%). The mean range of fidelity varied across sites (26.7-91.2%) and occupational therapists (26.7-94.1%). CONCLUSIONS: A reliable, systematic method for measuring fidelity of delivery of COTiD-UK was developed and applied, and can be adapted for use in similar interventions. As COTiD-UK was delivered with moderate fidelity, there is a reasonable degree of confidence that intervention effects were attributable to COTiD-UK.


Assuntos
Demência/terapia , Terapeutas Ocupacionais/normas , Terapia Ocupacional/métodos , Humanos , Ensaios Clínicos Controlados Aleatórios como Assunto , Reino Unido
7.
PLoS Med ; 15(2): e1002500, 2018 02.
Artigo em Inglês | MEDLINE | ID: mdl-29408901

RESUMO

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.


Assuntos
Antipsicóticos/uso terapêutico , Demência/enfermagem , Educação Continuada em Enfermagem , Relações Enfermeiro-Paciente , Casas de Saúde , Assistência Centrada no Paciente/métodos , Agitação Psicomotora/enfermagem , Idoso de 80 Anos ou mais , Antipsicóticos/economia , Análise Custo-Benefício , Demência/tratamento farmacológico , Demência/economia , Demência/psicologia , Educação Continuada em Enfermagem/economia , Educação Continuada em Enfermagem/métodos , Educação Continuada em Enfermagem/normas , Feminino , Instituição de Longa Permanência para Idosos/economia , Humanos , Análise de Intenção de Tratamento , Relações Interpessoais , Masculino , Casas de Saúde/economia , Assistência Centrada no Paciente/economia , Agitação Psicomotora/tratamento farmacológico , Agitação Psicomotora/epidemiologia , Qualidade de Vida , Reino Unido/epidemiologia
8.
Int J Geriatr Psychiatry ; 32(10): 1094-1103, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-27640872

RESUMO

BACKGROUND: Very few interventional studies have directly examined the impact of treatment approaches on health-related quality of life (HRQL) in people with dementia. This is of particular importance in therapies to address behavioural symptoms, where HRQL is often severely affected. METHODS: Analysis within the WHELD cluster randomised factorial study in 16 UK care homes examining the impact of person-centred care in combination with antipsychotic review, social interaction and exercise interventions. This study analysed impact on HRQL through the DEMQOL-Proxy. RESULTS: Data on HRQL were available for 187 participants. People receiving antipsychotic review showed a significant worsening in two DEMQOL-Proxy domains (negative emotion: p = 0.02; appearance: p = 0.04). A best-case scenario analysis showed significant worsening for total DEMQOL-Proxy score. Social interaction intervention resulted in a significant benefit to HRQL (p = 0.04). There was no deterioration in HRQL in groups receiving both antipsychotic review and social interaction (p = 0.62). CONCLUSIONS: This demonstrates an important detrimental impact of discontinuation of antipsychotics in dementia on HRQL, highlighting the need for careful review of best practice guidelines regarding antipsychotic use and emphasising the importance of providing evidence-based non-pharmacological interventions in conjunction with antipsychotic review. Copyright © 2016 John Wiley & Sons, Ltd.


Assuntos
Antipsicóticos/uso terapêutico , Demência/terapia , Relações Interpessoais , Casas de Saúde/estatística & dados numéricos , Qualidade de Vida , Terapia Socioambiental/métodos , Idoso , Idoso de 80 Anos ou mais , Análise por Conglomerados , Demência/diagnóstico , Terapia por Exercício/métodos , Feminino , Nível de Saúde , Humanos , Masculino , Psicoterapia Centrada na Pessoa/métodos
9.
Cochrane Database Syst Rev ; 6: CD009627, 2017 06 11.
Artigo em Inglês | MEDLINE | ID: mdl-28602027

RESUMO

BACKGROUND: The sustained interest in electronic assistive technology in dementia care has been fuelled by the urgent need to develop useful approaches to help support people with dementia at home. Also the low costs and wide availability of electronic devices make it more feasible to use electronic devices for the benefit of disabled persons. Information Communication Technology (ICT) devices designed to support people with dementia are usually referred to as Assistive Technology (AT) or Electronic Assistive Technology (EAT). By using AT in this review we refer to electronic assistive devices. A range of AT devices has been developed to support people with dementia and their carers to manage their daily activities and to enhance safety, for example electronic pill boxes, picture phones, or mobile tracking devices. Many are commercially available. However, the usefulness and user-friendliness of these devices are often poorly evaluated. Although reviews of (electronic) memory aids do exist, a systematic review of studies focusing on the efficacy of AT for memory support in people with dementia is lacking. Such a review would guide people with dementia and their informal and professional carers in selecting appropriate AT devices. OBJECTIVES: Primary objectiveTo assess the efficacy of AT for memory support in people with dementia in terms of daily performance of personal and instrumental activities of daily living (ADL), level of dependency, and admission to long-term care. Secondary objectiveTo assess the impact of AT on: users (autonomy, usefulness and user-friendliness, adoption of AT); cognitive function and neuropsychiatric symptoms; need for informal and formal care; perceived quality of life; informal carer burden, self-esteem and feelings of competence; formal carer work satisfaction, workload and feelings of competence; and adverse events. SEARCH METHODS: We searched ALOIS, the Specialised Register of the Cochrane Dementia and Cognitive Improvement Group (CDCIG), on 10 November 2016. ALOIS is maintained by the Information Specialists of the CDCIG and contains studies in the areas of dementia prevention, dementia treatment and cognitive enhancement in healthy people. We also searched the following list of databases, adapting the search strategy as necessary: Centre for Reviews and Dissemination (CRD) Databases, up to May 2016; The Collection of Computer Science Bibliographies; DBLP Computer Science Bibliography; HCI Bibliography: Human-Computer Interaction Resources; and AgeInfo, all to June 2016; PiCarta; Inspec; Springer Link Lecture Notes; Social Care Online; and IEEE Computer Society Digital Library, all to October 2016; J-STAGE: Japan Science and Technology Information Aggregator, Electronic; and Networked Computer Science Technical Reference Library (NCSTRL), both to November 2016; Computing Research Repository (CoRR) up to December 2016; and OT seeker; and ADEAR, both to February 2017. In addition, we searched Google Scholar and OpenSIGLE for grey literature. SELECTION CRITERIA: We intended to review randomised controlled trials (RCTs) and clustered randomised trials with blinded assessment of outcomes that evaluated an electronic assistive device used with the single aim of supporting memory function in people diagnosed with dementia. The control interventions could either be 'care (or treatment) as usual' or non-technological psychosocial interventions (including interventions that use non-electronic assistive devices) also specifically aimed at supporting memory. Outcome measures included activities of daily living, level of dependency, clinical and care-related outcomes (for example admission to long-term care), perceived quality of life and well-being, and adverse events resulting from the use of AT; as well as the effects of AT on carers. DATA COLLECTION AND ANALYSIS: Two review authors independently screened all titles and abstracts identified by the search. MAIN RESULTS: We identified no studies which met the inclusion criteria. AUTHORS' CONCLUSIONS: This review highlights the current lack of high-quality evidence to determine whether AT is effective in supporting people with dementia to manage their memory problems.


Assuntos
Demência , Eletrônica Médica , Memória , Tecnologia Assistiva , Atividades Cotidianas , Humanos
10.
Int Psychogeriatr ; 29(8): 1281-1296, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-28511738

RESUMO

BACKGROUND: Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice. METHOD: A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties. RESULTS: Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory. CONCLUSIONS: There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being.


Assuntos
Cuidadores/psicologia , Demência/enfermagem , Família/psicologia , Autoeficácia , Espiritualidade , Humanos , Escalas de Graduação Psiquiátrica , Psicometria , Pesquisa Qualitativa , Qualidade de Vida , Recompensa , Apoio Social
11.
J Neurol Neurosurg Psychiatry ; 87(11): 1218-1228, 2016 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-27521377

RESUMO

OBJECTIVE: The objective of this study was to evaluate peer support and reminiscence therapy, separately and together, in comparison with usual care for people with dementia and their family carers. DESIGN: Factorial pragmatic randomised trial, analysed by treatment allocated, was used for this study. SETTING: The trial ran in Community settings in England. PARTICIPANTS: People with dementia and their family carers were the participants. INTERVENTIONS: Treatment as usual (TAU) plus one of the following: one-to-one peer support to family carers from experienced carers (Carer Supporter Programme; CSP), group reminiscence therapy (Remembering Yesterday, Caring Today; RYCT) for people with dementia and carers, both or neither. MAIN OUTCOME MEASURES: Primary outcomes included health-related quality of life (SF-12) for carers and quality of life (QoL-AD) for people with dementia; secondary outcomes included quality of relationship for carers and people with dementia; both were collected by blinded assessors at baseline, 5 and 12 months (primary end point). RESULTS: Of 291 pairs recruited, we randomised 145 (50%) to CSP (71% uptake) and 194 (67%) to RYCT (61% uptake). CSP and RYCT, separately or together, were not effective in improving primary outcomes or most secondary outcomes. For CSP versus 'no CSP', adjusted difference in means was 0.52 points on the SF-12 (95% CI -1.28 to 2.32) and -0.08 points on the QoL-AD (95% CI -1.70 to 1.56). For RYCT versus 'no RYCT', the difference was 0.10 points on the SF-12 (95% CI -1.72 to 1.93) and 0.51 points on the QoL-AD (95% CI -1.17 to 2.08). However, carers reported better relationships with the people with dementia (difference 1.11, 95% CI 0.00 to 2.21, p=0.05). Comparison of combined intervention with TAU, and of intervention received, suggested differential impacts for carers and persons with dementia. CONCLUSIONS: There is no evidence from the trial that either peer support or reminiscence is effective in improving the quality of life. TRIAL REGISTRATION NUMBER: ISRCTN37956201; Results.


Assuntos
Doença de Alzheimer/psicologia , Doença de Alzheimer/terapia , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Memória Episódica , Grupo Associado , Psicoterapia/métodos , Apoio Social , Atividades Cotidianas/classificação , Atividades Cotidianas/psicologia , Idoso , Idoso de 80 Anos ou mais , Avaliação da Deficiência , Feminino , Nível de Saúde , Humanos , Londres , Masculino , Pessoa de Meia-Idade , Qualidade de Vida
12.
Aging Ment Health ; 20(7): 762-9, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-25929167

RESUMO

OBJECTIVES: In the Netherlands, Graff et al. found Community Occupational Therapy in Dementia (COTiD) demonstrated benefits to people with dementia and family carers. In this study, focus groups took place with people with dementia and family carers to explore how to make COTiD relevant to the UK context. METHOD: Six focus groups (three with people living with dementia (n = 18) and three with family carers (n = 21)) took place. Participants were asked for their impressions of the intervention, the extent to which it could meet their needs, and what modifications were needed. Audio-recordings of the groups were transcribed and analysed. RESULTS: Three key themes emerged covering 'loss and living with dementia', 'what helped us', and 'consistency and continuity'. People with dementia and family carers spoke about the impact of their diagnosis on them and their family and what strategies helped. Issues such as timing, follow-up, and the importance of an early intervention in preventing crises were highlighted. There was some concern over the length of the intervention and the disruption it might cause to current schedules. CONCLUSION: Overall, participants were optimistic about COTiD being used in the United Kingdom if it was to be introduced in a flexible and timely manner, incorporating the needs and existing strategies of the person with dementia. These outcomes have led to changes, such as incorporating more flexibility into COTiD, being made to the intervention prior to its implementation in the United Kingdom.


Assuntos
Cuidadores , Demência/terapia , Grupos Focais/métodos , Terapia Ocupacional/métodos , Cuidadores/psicologia , Demência/psicologia , Família , Feminino , Humanos , Relações Interpessoais , Masculino , Avaliação de Resultados em Cuidados de Saúde , Pesquisa Qualitativa , Qualidade de Vida , Características de Residência , Apoio Social , Reino Unido
14.
Gerontol Geriatr Med ; 10: 23337214241239174, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38510059

RESUMO

The behavioral and psychological symptoms of dementia (BPSD) can be challenging for family caregivers to cope with, leading to distress and fatigue. It is therefore important to offer effective strategies to reduce the impact of BPSD. The HOMESIDE randomized controlled trial (RCT) was testing purposefully developed interventions to improve the quality of life and wellbeing of dyads of people with dementia and family caregivers as a result of reduction of BPSD. HOMESIDE RCT was conducted in Australia, Germany, Norway, Poland and the United Kingdom between 2019 and 2022. The study design was a three-arm parallel-group single-blinded, pragmatic RCT with a sample size of 432 dyads. Dyads were randomly allocated to one of three treatment conditions: Music Intervention plus Standard Care; or Reading Intervention plus Standard Care; or Standard Care only. The Reading Intervention (RI) within the HOMESIDE RCT aimed to evoke shared discussion, reminiscence, meaningful shared experiences and consequently enrich everyday life, interaction and the emotional connection between the caregiver (CG) and carereceiver (CR); as well as to enhance activities of daily living and to promote relaxation or stimulation as appropriate. This paper describes the underlying conceptual framework, the content, and delivery of the Reading Intervention within the HOMESIDE RCT.

15.
Int J Geriatr Psychiatry ; 28(12): 1296-304, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23637069

RESUMO

BACKGROUND: Activity levels remain low in care homes, but activity engagement can enhance residents' quality of life. AIM: This study aimed to assess an occupational therapy programme designed to enable care home staff to increase activity provision. METHOD: A cluster randomised controlled trial with blinded assessment of outcome was conducted. A total of 210 residents with dementia in 16 care homes were recruited. Intervention homes received the programme, and control homes were provided usual care. Primary outcome is quality of life; secondary measures are dependency, challenging behaviour, depression, anxiety, severity of dementia and number and type of medication. RESULTS: Quality of life decreased overall with statistically significant change in staff ratings (p < 0.001). At follow-up, staff-rated quality of life was slightly lower in the intervention group (mean difference in staff ratings = -1.91, 95% CI -3.39 to -0.43, p = 0.01). There were no significant differences between the two groups for self-rated quality of life or secondary outcomes. CONCLUSION: The results may be related to the following: wide variability in how the intervention was implemented, such as low staff attendance at the education and coaching sessions, and patchy provision of additional activities to residents; or the residents' severity of dementia or the choice of outcome measures. Future studies need to pay more attention to process measures such as implementation and fidelity strategies, and outcome measures that better capture the focus of the intervention such as level of engagement and activity.


Assuntos
Demência , Pessoal de Saúde/educação , Casas de Saúde/normas , Terapia Ocupacional , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Análise por Conglomerados , Demência/psicologia , Feminino , Humanos , Masculino , Transtornos Mentais , Qualidade de Vida
16.
Int Psychogeriatr ; 24(6): 911-20, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22217445

RESUMO

BACKGROUND: Symptoms such as depression, anxiety, and behavioral problems are very common in people with dementia living in care homes. Staff training has been identified as a promising psychosocial intervention. This pilot study investigated the feasibility of implementing the Staff Training in Assisted Living Residences (STAR) program in UK care homes. METHODS: The eight-week STAR program was delivered in two care homes. Twenty-five care staff attended the training. Thirty-two residents, with dementia and clinically significant anxiety, depression, or behavioral problems, were included in the study. Residents and staff were assessed at baseline and eight-week follow-up. RESULTS: Residents demonstrated significantly reduced symptoms of depression and behavioral problems following the implementation of the program, although resident-rated quality of life and anxiety symptoms did not improve significantly. Staff sense of hopefulness towards people with dementia also improved significantly and staff rated themselves as significantly more competent at forming relationships with residents. CONCLUSION: Delivering the STAR program to care staff can have an impact on the behavioral and psychological symptoms of dementia displayed by care home residents. The program was feasible to implement and was rated highly by care staff. A large-scale randomized controlled trial is now required to evaluate the effectiveness of this training intervention.


Assuntos
Demência/terapia , Pessoal de Saúde/educação , Instituição de Longa Permanência para Idosos , Adulto , Idoso de 80 Anos ou mais , Ansiedade/psicologia , Demência/psicologia , Depressão/psicologia , Educação/métodos , Feminino , Humanos , Masculino , Projetos Piloto , Avaliação de Programas e Projetos de Saúde , Qualidade de Vida , Reino Unido , Recursos Humanos
17.
PLoS One ; 17(2): e0262828, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35148329

RESUMO

BACKGROUND: A community-based occupational therapy intervention for people with mild to moderate dementia and their family carers: the Community Occupational Therapy in Dementia-UK version (COTiD-UK); and Treatment as usual (TAU) were randomly assigned to 468 pairs (each comprising a person with dementia and a family carer) in the Valuing Active Life in Dementia (VALID) randomised controlled trial (RCT). OBJECTIVES: To compare the cost-utility of the COTiD-UK intervention compared to TAU, using data from the VALID RCT. METHODS: We performed a cost-utility analysis estimating mean costs and quality adjusted life years (QALYs) per person with dementia and carer for both treatments over a 26 weeks' time horizon based on resource use data and utility values collected in the trial. RESULTS: Taking the National Health Service and Personal Social Services perspective, including costs and benefits to the person with dementia only, measuring Health Related Quality of Life based on Dementia Quality of Life scale (DEMQOL), accounting for missing data and adjusting for baseline values, there was a significant difference in costs between COTiD-UK and TAU (mean incremental cost for COTiD-UK £784 (95% CI £233 to £1334)), but no significant difference in outcomes (mean QALYs gained 0.00664 (95% CI -0.00404, 0.01732)). The Incremental Net Monetary Benefit (INMB) for COTiD-UK versus TAU was negative at a maximum willingness to pay for a QALY of £20000 (mean -£651, 95% CI -£878 to -£424) or £30000 (mean -£585, 95% CI -£824 to -£345). Extensive sensitivity analyses confirmed the results. CONCLUSIONS: This community-based occupational therapy intervention has a very low probability of being cost-effective.


Assuntos
Análise Custo-Benefício , Demência/reabilitação , Terapia Ocupacional , Cuidadores , Demência/economia , Humanos , Anos de Vida Ajustados por Qualidade de Vida , Resultado do Tratamento , Reino Unido
18.
Dementia (London) ; 20(6): 2057-2076, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-33371738

RESUMO

AIM: Community Occupational Therapy in Dementia (COTiD-UK) is a manualised intervention delivered to the person with dementia and their identified family carer primarily in their own home. The focus is on enabling both the person with dementia and their family carer to engage in personally meaningful activities. This qualitative study examines the experiences of people with mild to moderate dementia, their family carers and occupational therapists, of taking part in the COTiD-UK intervention. METHOD: A purposive sample of 22 pairs of people with dementia and a family carer and seven occupational therapists took part in semi-structured interviews that were audio recorded, transcribed and inductively analysed using thematic analysis. FINDINGS: Themes from the occupational therapist interviews relate to the COTiD-UK intervention philosophy and content, aspects of delivering it in practice and thinking ahead to it becoming usual practice. Themes from the pair interviews relate to the focus of COTiD-UK sessions on meaningful occupation and working together and a sense of being able to plan to live well with dementia in the short- and longer-term as a result of the intervention. CONCLUSION: This person-centred occupation-focussed intervention was highly valued by people with dementia and their family carers and the occupational therapists delivering it.


Assuntos
Demência , Terapia Ocupacional , Cuidadores , Demência/terapia , Humanos , Terapeutas Ocupacionais , Pesquisa Qualitativa , Reino Unido
19.
Dementia (London) ; 20(8): 2779-2801, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33913362

RESUMO

BACKGROUND AND OBJECTIVES: The Covid-19 pandemic reduced access to social activities and routine health care that are central to dementia prevention. We developed a group-based, video-call, cognitive well-being intervention; and investigated its acceptability and feasibility; exploring through participants' accounts how the intervention was experienced and used in the pandemic context. RESEARCH DESIGN AND METHOD: We recruited adults aged 60+ years with memory concerns (without dementia). Participants completed baseline assessments and qualitative interviews/focus groups before and after the 10-week intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis. RESULTS: 12/17 participants approached completed baseline assessments, attended 100/120 (83.3%) intervention sessions and met 140/170 (82.4%) of goals set. Most had not used video calling before. In the thematic analysis, our overarching theme was social connectedness. Three sub-themes were as follows: Retaining independence and social connectedness: social connectedness could not be at the expense of independence; Adapting social connectedness in the pandemic: participants strived to compensate for previous social connectedness as the pandemic reduced support networks; Managing social connections within and through the intervention: although there were tensions, for example, between sharing of achievements feeling supportive and competitive, participants engaged with various lifestyle changes; social connections supported group attendance and implementation of lifestyle changes. DISCUSSION AND IMPLICATIONS: Our intervention was acceptable and feasible to deliver by group video-call. We argue that dementia prevention is both an individual and societal concern. For more vulnerable populations, messages that lifestyle change can help memory should be communicated alongside supportive, relational approaches to enabling lifestyle changes.


Assuntos
COVID-19 , Demência , Adulto , Humanos , Pandemias , SARS-CoV-2
20.
SAGE Open Med ; 8: 2050312120958926, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33133601

RESUMO

OBJECTIVES: There is currently little known about why people decline to participate in dyadic, psychosocial dementia research. This interview study aims to explore the reasons why people declined to participate in the Valuing Active Life in Dementia research trial. METHODS: Ten family carers of people with dementia, who were part of a dyad that had declined to take part in the randomised controlled trial, participated in qualitative telephone interviews to explore their reasons for declining. Inductive thematic analysis was used to identify themes. FINDINGS: Two themes with related sub-themes were identified: (1) Protectiveness - protecting the person with dementia, themselves as carers and their current lifestyle; (2) 'It's not for us' - the time commitment, and the possible unsuitability of the intervention, was seen to outweigh the perceived benefit of taking part. People with dementia were not always involved in the decision-making process, with carers stating the decision not to participate was made in the usual way as all their decisions. No apparent differences between the spousal and the child carers were apparent in the small sample. CONCLUSION: Recruitment to randomised controlled trials can be considered difficult or unfair because some participants will miss out on the desired intervention. However, this study shows that concern about the time and inconvenience of being involved in the trial can put people off research participation. Identifying possible reasons for declining research participation contributes to the design of future trials and recruitment strategies, so that the potential benefit is considered relative to the time and effort involved. Offering research opportunities to people with dementia and their families at the right stage of the dementia trajectory for their needs, facilitating personalised recruitment strategies with finely tailored researcher communication skills should help maximise recruitment, reduce attrition and deliver a more successful trial.

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