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1.
J Health Psychol ; 27(2): 374-385, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-32909455

RESUMO

The A-ADS is one the first validated measures of attitudes of dementia in adolescents, though further validation is needed. 630 adolescents were recruited from secondary schools in England. A Principal Component Analysis was completed (n = 230) followed by a Confirmatory Factor Analysis (n = 400). Reducing the A-ADS into a single factor, 13-item measure (Brief A-ADS) improved the model fit of the measure (χ2 = 182.75, DF = 65, CMIN/DF = 2.81, p < 0.001, CFI = 0.90, RMSEA = 0.07). The scale demonstrated good internal consistency, good predictive and concurrent validity. Building on the validation of the A-ADS, the Brief A-ADS is suitable to capture attitudes towards dementia amongst adolescents.


Assuntos
Atitude , Demência , Adolescente , Demência/diagnóstico , Análise Fatorial , Humanos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
2.
Dementia (London) ; 20(1): 148-160, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31466468

RESUMO

One-third of people with dementia live in care home settings and in order to deliver better evidence-based care, robust research including clinical trials is required. Concerns have been raised by researchers about the capacity of care home residents with dementia to participate in clinical trials. This includes self-report measures, completion of which researchers have suggested may be unreliable or impossible and may cause distress for residents. Many trials, therefore, utilise only proxy completed outcome measures. This is despite evidence that individuals with mild through to advanced dementia can reliably report on outcomes, if appropriate measures and approaches to data collection are used. However, little has been written about best practice in data collection with this group. This study aimed to explore the experiences of researchers working on dementia trials in care homes and identify best practices to assist design of future trials. Thirty-three researchers completed an online, qualitative questionnaire outlining their experiences and the perceived benefits and challenges of data collection with people with dementia. We identified five main benefits: (1) improving the delivery of person-centred care, (2) hearing the voice of people with dementia, (3) residents spending time with researchers, (4) improving researcher understanding, and (5) having an evidence base from multiple sources. We also identified five main challenges: (1) effective communication, (2) fluctuating capacity, (3) causing distress to residents, (4) time pressures, and (5) staff availability. Researchers also made suggestions about how these can be overcome. We recommend that the challenges identified could be overcome using appropriate methods for collecting data. Thorough training for researchers on data collection with people with dementia was identified as important for ensuring successful data collection.


Assuntos
Demência , Humanos , Avaliação de Resultados em Cuidados de Saúde , Autorrelato , Inquéritos e Questionários
3.
Aging Ment Health ; 25(8): 1410-1423, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-32279541

RESUMO

OBJECTIVES: Agitation is common and problematic in care home residents with dementia. This study investigated the (cost)effectiveness of Dementia Care Mapping™ (DCM) for reducing agitation in this population. METHOD: Pragmatic, cluster randomised controlled trial with cost-effectiveness analysis in 50 care homes, follow-up at 6 and 16 months and stratified randomisation to intervention (n = 31) and control (n = 19). Residents with dementia were recruited at baseline (n = 726) and 16 months (n = 261). Clusters were not blinded to allocation. Three DCM cycles were scheduled, delivered by two trained staff per home. Cycle one was supported by an external DCM expert. Agitation (Cohen-Mansfield Agitation Inventory (CMAI)) at 16 months was the primary outcome. RESULTS: DCM was not superior to control on any outcomes (cross-sectional sample n = 675: 287 control, 388 intervention). The adjusted mean CMAI score difference was -2.11 points (95% CI -4.66 to 0.44, p = 0.104, adjusted ICC control = 0, intervention 0.001). Sensitivity analyses supported the primary analysis. Incremental cost per unit improvement in CMAI and QALYs (intervention vs control) on closed-cohort baseline recruited sample (n = 726, 418 intervention, 308 control) was £289 and £60,627 respectively. Loss to follow-up at 16 months in the original cohort was 312/726 (43·0%) mainly (87·2%) due to deaths. Intervention dose was low with only a quarter of homes completing more than one DCM cycle. CONCLUSION: No benefits of DCM were evidenced. Low intervention dose indicates standard care homes may be insufficiently resourced to implement DCM. Alternative models of implementation, or other approaches to reducing agitation should be considered.


Assuntos
Demência , Estudos de Coortes , Análise Custo-Benefício , Estudos Transversais , Demência/terapia , Humanos , Agitação Psicomotora/terapia , Qualidade de Vida
4.
Support Care Cancer ; 29(5): 2571-2579, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-32955656

RESUMO

OBJECTIVES: The risks of developing cancer and dementia increase as we age; however, this comorbidity remains relatively under-researched. This study reports on the challenges that people affected by comorbid cancer and dementia face when navigating engagement with cancer treatment within secondary care. MATERIALS AND METHODS: An ethnographic study recruiting 17 people with cancer and dementia, 22 relatives and 19 oncology staff in two UK National Health Service Trusts. Observations (46 h) and informal conversations were conducted during oncology appointments involving people with dementia. Semi-structured interviews (n = 37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services were also carried out. Data were analysed using ethnographically informed thematic analysis. RESULTS: People with cancer and dementia experienced challenges across three areas of navigating cancer treatment and care: navigating through multiple services, appointments and layers of often complex information; repeatedly navigating transport to and from hospital; and navigating non-dementia-friendly hospital outpatient environments alongside the cognitive problems associated with dementia. CONCLUSIONS: Dementia impacts patients' abilities to navigate the many practical aspects of attending hospital for cancer treatment and care. This study indicates the importance of addressing ways to improve the experience of travelling to and from the hospital, alongside extending the ongoing efforts to develop 'dementia-friendly' hospital in-patient areas and practices, to outpatient departments. Such steps will serve to improve hospital-based cancer treatment and care and more broadly outpatient appointment experiences for people with dementia and their families.


Assuntos
Antropologia Cultural/métodos , Demência/terapia , Neoplasias/complicações , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
5.
BJPsych Open ; 6(6): e137, 2020 Nov 06.
Artigo em Inglês | MEDLINE | ID: mdl-33153507

RESUMO

BACKGROUND: The Neuropsychiatric Inventory (NPI) is predicated on the assumption that psychiatric symptoms are manifestations of disease. Biopsychosocial theories suggest behavioural changes viewed as psychiatric may also arise as a result of external behavioural triggers. Knowing the causes of psychiatric symptoms is important since the treatment and management of symptoms relies on this understanding. AIMS: This study sought to understand the causes of psychiatric symptoms recorded in care home settings by investigating qualitatively described symptoms in Neuropsychiatric Inventory-Nursing Home (NPI-NH) interviews. METHOD: The current study examined the NPI-NH interviews of 725 participants across 50 care homes. The qualitatively described symptoms from each of the 12 subscales of the NPI were extracted: 347 interviews included at least one qualitatively described symptom (n = 651 descriptions). A biopsychosocial algorithm developed following a process of independent researcher coding (n = 3) was applied to the symptom descriptions. This determined whether the description had predominantly psychiatric features, or features that were cognitive or attributable to other causes (i.e. issues with orientation and memory; expressions of need; poor care and communication; or understandable reactions). RESULTS: Our findings suggest that the majority (over 80%) of descriptions described symptoms with features that could be attributable to cognitive changes and external triggers (such as poor care and communication). CONCLUSIONS: The finding suggest that in its current form the NPI-NH may over attribute the incidence of psychiatric symptoms in care homes by overlooking triggers for behavioural changes. Measures of psychiatric symptoms should determine the causes of behavioural changes in order to guide treatments more effectively.

6.
BMC Geriatr ; 20(1): 188, 2020 06 02.
Artigo em Inglês | MEDLINE | ID: mdl-32487024

RESUMO

BACKGROUND: Current evidence suggests that negative and stigmatising attitudes towards dementia may develop at a young age. There are a number of dementia education and awareness initiatives aimed at reducing stigma, though they have not been robustly evaluated to establish the impact on dementia attitudes or suitability in adolescent populations. This study explored the efficacy and satisfaction of one such initiative (Dementia Friends) in a British adolescent sample. METHODS: 301 adolescents (M = 12.6 years old, SD = 0.73) were assigned to either receive Dementia Friends (a 60-min interactive class that teaches about dementia and its effects on people's lives) or education as usual. All participants completed a series of validated questionnaires pre- and post-intervention, related to dementia attitudes (Brief A-ADS and KIDS). RESULTS: Adolescents in the dementia awareness group showed little to no improvements between time-points. The change scores in the dementia awareness group did not significantly differ to the control group based on both KIDS (d = - 0.003, p = 0.98) and Brief A-ADS (d = 0.14, p = 0.13) measures. There was no Group x Time effect after controlling for confounding variables. CONCLUSIONS: Dementia Friends is successful in terms of reach and impact, though this study suggests that it may fall short of achieving its goal of improving attitudes towards dementia. Importantly, Dementia Friends did not have a negative effect on attitudes, and the majority of adolescents enjoyed the sessions. It is important that these findings are replicated in a larger randomised-controlled study.


Assuntos
Atitude , Demência , Adolescente , Demência/diagnóstico , Demência/epidemiologia , Demência/terapia , Amigos , Humanos , Inquéritos e Questionários
7.
J Geriatr Oncol ; 11(7): 1125-1131, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32253158

RESUMO

OBJECTIVES: Despite cancer and dementia being conditions in which prevalence increases with age, there remains limited research on the cancer treatment and care needs of this population. Our study aimed to address this gap and this paper reports on the role of supportive networks in enabling people with dementia to access cancer treatment and care. MATERIALS AND METHODS: An ethnographic study involving seventeen people with cancer and dementia, 22 relatives and nineteen oncology staff. It comprised observations (46 h) of and informal conversations during oncology appointments attended by people with dementia and their relatives and semi-structured interviews (n = 37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services. Data were analysed using thematic analysis. RESULTS: Patients and oncology staff relied on and expected relatives to provide practical and emotional support around cancer treatment and care. Families varied in their ability to provide required support due to extent of the family network, practical issues, knowledge of the patient and their wishes, family conflict and the patient's willingness to accept help. Where no family network was available, support provision was complex and this could compromise access to cancer treatment. CONCLUSIONS: People with comorbid cancer and dementia rely heavily on a supportive family network to access treatment and care. Oncology services need to assess the supportive networks available to individual patients in developing cancer treatment plans. Urgent consideration needs to be given to how those with no family networks can be appropriately supported.


Assuntos
Demência , Neoplasias , Cuidadores , Comunicação , Demência/terapia , Humanos , Neoplasias/terapia
8.
Health Technol Assess ; 24(16): 1-172, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-32216870

RESUMO

BACKGROUND: The quality of care for people with dementia in care homes is of concern. Interventions that can improve care outcomes are required. OBJECTIVE: To investigate the clinical effectiveness and cost-effectiveness of Dementia Care Mapping™ (DCM) for reducing agitation and improving care outcomes for people living with dementia in care homes, versus usual care. DESIGN: A pragmatic, cluster randomised controlled trial with an open-cohort design, follow-up at 6 and 16 months, integrated cost-effectiveness analysis and process evaluation. Clusters were not blinded to allocation. The primary end point was completed by staff proxy and independent assessors. SETTING: Stratified randomisation of 50 care homes to the intervention and control groups on a 3 : 2 ratio by type, size, staff exposure to dementia training and recruiting hub. PARTICIPANTS: Fifty care homes were randomised (intervention, n = 31; control, n = 19), with 726 residents recruited at baseline and a further 261 recruited after 16 months. Care homes were eligible if they recruited a minimum of 10 residents, were not subject to improvement notices, had not used DCM in the previous 18 months and were not participating in conflicting research. Residents were eligible if they lived there permanently, had a formal diagnosis of dementia or a score of 4+ on the Functional Assessment Staging Test of Alzheimer's Disease, were proficient in English and were not terminally ill or permanently cared for in bed. All homes were audited on the delivery of dementia and person-centred care awareness training. Those not reaching a minimum standard were provided training ahead of randomisation. Eighteen homes took part in the process evaluation. INTERVENTION: Two staff members from each intervention home were trained to use DCM and were asked to carry out three DCM cycles; the first was supported by an external expert. MAIN OUTCOME MEASURES: The primary outcome was agitation (Cohen-Mansfield Agitation Inventory), measured at 16 months. Secondary outcomes included resident behaviours and quality of life. RESULTS: There were 675 residents in the final analysis (intervention, n = 388; control, n = 287). There was no evidence of a difference in agitation levels between the treatment arms. The adjusted mean difference in Cohen-Mansfield Agitation Inventory score was -2.11 points, being lower in the intervention group than in the control (95% confidence interval -4.66 to 0.44; p = 0.104; adjusted intracluster correlation coefficient: control = 0, intervention = 0.001). The sensitivity analyses results supported the primary analysis. No differences were detected in any of the secondary outcomes. The health economic analyses indicated that DCM was not cost-effective. Intervention adherence was problematic; only 26% of homes completed more than their first DCM cycle. Impacts, barriers to and facilitators of DCM implementation were identified. LIMITATIONS: The primary completion of resident outcomes was by staff proxy, owing to self-report difficulties for residents with advanced dementia. Clusters were not blinded to allocation, although supportive analyses suggested that any reporting bias was not clinically important. CONCLUSIONS: There was no benefit of DCM over control for any outcomes. The implementation of DCM by care home staff was suboptimal compared with the protocol in the majority of homes. FUTURE WORK: Alternative models of DCM implementation should be considered that do not rely solely on leadership by care home staff. TRIAL REGISTRATION: Current Controlled Trials ISRCTN82288852. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 16. See the NIHR Journals Library website for further project information.


Agitation is common in care home residents and may result from care that does not meet individual needs. Dementia Care Mapping™ (DCM) is a tool used within care homes to improve the delivery of person-centred care, which may help reduce agitation. This randomised controlled trial aimed to understand whether or not DCM is better than usual care at reducing resident agitation, behaviours that staff may find difficult to support and the use of antipsychotic medicines, as well as at improving residents' quality of life and staff communication. It also assessed its value for money. We recruited 726 residents with dementia from 50 care homes. After initial data collection, care homes were randomly assigned to DCM (31/50) or told to continue with usual care (19/50) and data were collected again after 6 and 16 months. A further 261 residents were recruited after 16 months. We also interviewed staff, relatives and residents about the use of DCM after the final data collection had taken place. Two staff members in each DCM home were trained to use DCM and were helped by an expert to use it for the first time. They were asked to use it again a further two times without support. Results showed that DCM was no better than usual care in relation to any of the outcomes. It was also not shown to be value for money. Only one-quarter of care homes used DCM more than once. The care staff who were interviewed said that the benefits of using DCM included reduced resident boredom and increased staff confidence. There were also many challenges, including the time needed to complete DCM, a lack of managerial support and problems with staffing levels. Putting DCM into practice in care homes was difficult, even with expert support, and most care homes did not complete three DCM cycles. Future research should explore models of implementing DCM that do not rely on care home staff to lead them.


Assuntos
Ansiedade , Demência/terapia , Qualidade da Assistência à Saúde , Qualidade de Vida/psicologia , Instituições Residenciais , Idoso , Ansiedade/prevenção & controle , Ansiedade/psicologia , Análise Custo-Benefício , Feminino , Humanos , Masculino , Reino Unido
9.
Dementia (London) ; 19(6): 1844-1854, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30376730

RESUMO

The development of dementia friendly communities is a current global and national priority for the UK. As a response to policy, there have been a number of dementia awareness initiatives disseminated with the aim of reducing the stigma associated with a diagnosis of dementia. The inclusion of adolescents in such initiatives is imperative in order to sustain dementia friendly communities. With this in mind, the aim of this study was to establish the dementia education needs of adolescents and effective dissemination strategies to convey key messages. A total of 42 adolescents aged 12 to 18 years participated in eight focus group discussions. Key themes to emerge from discussions included: the importance of dementia awareness, topics of interest within dementia, preferred methods of learning, the inclusion of the person living with dementia and the use of social media. The findings of the study will enable the development of appropriate dementia awareness initiatives for adolescents and thus facilitate the sustainability of dementia friendly communities.


Assuntos
Demência , Conhecimentos, Atitudes e Prática em Saúde , Estigma Social , Adolescente , Criança , Feminino , Grupos Focais , Humanos , Masculino
10.
Int Psychogeriatr ; 32(1): 75-85, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-30968783

RESUMO

OBJECTIVES: Behaviours associated with agitation are common in people living with dementia. The Cohen-Mansfield Agitation Inventory (CMAI) is a 29-item scale widely used to assess agitation completed by a proxy (family carer or staff member). However, proxy informants introduce possible reporting bias when blinding to the treatment arm is not possible, and potential accuracy issues due to irregular contact between the proxy and the person with dementia over the reporting period. An observational measure completed by a blinded researcher may address these issues, but no agitation measures with comparable items exist. DESIGN: Development and validation of an observational version of the CMAI (CMAI-O), to assess its validity as an alternative or complementary measure of agitation. SETTING: Fifty care homes in England. PARTICIPANTS: Residents (N = 726) with dementia. MEASUREMENTS: Two observational measures (CMAI-O and PAS) were completed by an independent researcher. Measures of agitation, functional status, and neuropsychiatric symptoms were completed with staff proxies. RESULTS: The CMAI-O showed adequate internal consistency (α = .61), criterion validity with the PAS (r = .79, p = < .001), incremental validity in predicting quality of life beyond the Functional Assessment Staging of Alzheimer's disease (ß = 1.83, p < .001 at baseline) and discriminant validity from the Neuropsychiatric Inventory Apathy subscale (r = .004, p = .902). CONCLUSIONS: The CMAI-O is a promising research tool for independently measuring agitation in people with dementia in care homes. Its use alongside the CMAI could provide a more robust understanding of agitation amongst residents with dementia.


Assuntos
Agressão , Demência/complicações , Testes Neuropsicológicos , Agitação Psicomotora/diagnóstico , Idoso , Idoso de 80 Anos ou mais , Inglaterra , Feminino , Avaliação Geriátrica/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Agitação Psicomotora/psicologia , Qualidade de Vida
11.
Aging Ment Health ; 24(7): 1175-1181, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-31081351

RESUMO

Objectives: There is a lack of understanding about how adolescents perceive dementia, and what their dementia related experiences are. Without such information, it is hard to make a case for the need to raise awareness of dementia in adolescents, and the best strategies to achieve this.Methods: In a cohort of 901 adolescents (aged 13-18) from the South East of England, we explored what the experiences and perceptions of dementia were using a series of questionnaires. Descriptive data of individual items were reported, comparing differences between genders.Results: The adolescents within this study tended to have positive or neutral attitudes towards dementia, though there was evidence that a proportion of adolescents had misconceptions or held negative attitudes (e.g. 28.5% of adolescents disagreed with the statement 'In general, I have positive attitudes about people with dementia'). We also identified that the adolescents had a range of experiences of dementia including providing some form of care for someone with dementia (23.2%), though most had indirect contact with dementia through TV and movies (77.3%), or adverts (80.2%). Females nearly always had better attitudes towards dementia and had significantly more contact with dementia.Conclusions: Considering that adolescents are already forming negative attitudes and misconceptions of dementia, it is important that we raise awareness about dementia in this age group.


Assuntos
Atitude , Demência , Adolescente , Inglaterra , Feminino , Humanos , Masculino , Inquéritos e Questionários
12.
Int Psychogeriatr ; 32(2): 287, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31264555

RESUMO

The above article (Griffiths et al., 2019) published with an incorrect abstract.The correct abstract is as follows. OBJECTIVES: Behaviours associated with agitation are common in people living with dementia. The Cohen-Mansfield Agitation Inventory (CMAI) is a 29-item scale widely used to assess agitation completed by a proxy (family carer or staff member). However, proxy informants introduce possible reporting bias when blinding to the treatment arm is not possible, and potential accuracy issues due to irregular contact between the proxy and the person with dementia over the reporting period. An observational measure completed by a blinded researcher may address these issues, but no agitation measures with comparable items exist. DESIGN: Development and validation of an observational version of the CMAI (CMAI-O), to assess its validity as an alternative or complementary measure of agitation. SETTING: Fifty care homes in England. PARTICIPANTS: Residents (N = 726) with dementia. MEASUREMENTS: Two observational measures (CMAI-O and PAS) were completed by an independent researcher. Measures of agitation, functional status, and neuropsychiatric symptoms were completed with staff proxies. RESULTS: The CMAI-O showed adequate internal consistency (α = .61), criterion validity with the PAS (r = .79, p = < .001), incremental validity in predicting quality of life beyond the Functional Assessment Staging of Alzheimer's disease (ß = 1.83, p < .001 at baseline) and discriminant validity from the Neuropsychiatric Inventory Apathy subscale (r = .004, p = .902). CONCLUSIONS: The CMAI-O is a promising research tool for independently measuring agitation in people with dementia in care homes. Its use alongside the CMAI could provide a more robust understanding of agitation amongst residents with dementia.

13.
Qual Life Res ; 29(2): 463-472, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31646416

RESUMO

PURPOSE: There are many validated quality-of-life (QoL) measures designed for people living with dementia. However, the majority of these are completed via proxy-report, despite indications from community-based studies that consistency between proxy-reporting and self-reporting is limited. The aim of this study was to understand the relationship between self- and proxy-reporting of one generic and three disease-specific quality-of-life measures in people living with dementia in care home settings. METHODS: As part of a randomised controlled trial, four quality-of-life measures (DEMQOL, EQ-5D-5L, QOL-AD and QUALID) were completed by people living with dementia, their friends or relatives or care staff proxies. Data were collected from 726 people living with dementia living in 50 care homes within England. Analyses were conducted to establish the internal consistency of each measure, and inter-rater reliability and correlation between the measures. RESULTS: Residents rated their quality of life higher than both relatives and staff on the EQ-5D-5L. The magnitude of correlations varied greatly, with the strongest correlations between EQ-5D-5L relative proxy and staff proxy. Internal consistency varied greatly between measures, although they seemed to be stable across types of participants. There was poor-to-fair inter-rater reliability on all measures between the different raters. DISCUSSION: There are large differences in how QoL is rated by people living with dementia, their relatives and care staff. These inconsistencies need to be considered when selecting measures and reporters within dementia research.


Assuntos
Demência/psicologia , Procurador , Qualidade de Vida/psicologia , Autorrelato , Idoso , Idoso de 80 Anos ou mais , Inglaterra , Feminino , Humanos , Masculino , Reprodutibilidade dos Testes , Inquéritos e Questionários
14.
Value Health ; 22(12): 1417-1426, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31806199

RESUMO

BACKGROUND: Dementia-specific and proxy-completed preference-based measures have been proposed for use in intervention studies involving people living in residential care, in instances where generic, self-reported preference-based measures have been deemed inappropriate. OBJECTIVE: This study was conducted to investigate the construct validity, criterion validity, and responsiveness of DEMQOL-Proxy-U and of self- and proxy-completed EQ-5D-5L. METHODS: The analysis used a 3-wave, individual-level data set of 1004 people living with dementia in residential care that included self-completed EQ-5D-5L and formal-carer and informal-carer proxy-completed EQ-5D-5L and DEMQOL-Proxy-U utility values, in addition to other nonutility cognitive measures (Functional Assessment Staging [FAST], Clinical Dementia Rating [CDR], Cohen-Mansfield Agitation Inventory [CMAI]) and health-related quality of life (HRQOL) measures (nursing home version of the Quality of Life with Alzheimer's disease scale [QOL-AD-NH], Quality of Life in Late-Stage Dementia [QUALID] scale). Construct validity, criterion validity, and responsiveness were assessed using correlation, Bland-Altman plots, and panel data regression models. RESULTS: Self-completed EQ-5D-5L failed to reflect clinically important differences and changes in FAST, CDR, and CMAI but did capture the resident's own view of HRQOL (QOL-AD-NH). As dementia severity increased, collection of EQ-5D-5L-proxy and DEMQOL-Proxy-U data was more feasible than collection of self-completed EQ-5D-5L. These formal-carer and informal-carer proxy measures also better reflected changes in FAST, CDR, and CMAI but did not capture the resident's own view of HRQOL (QOL-AD-NH), despite adequately capturing the proxy's own view of the resident's HRQOL (QUALID). This indicates discrepancies between a proxy's view and resident's view of the impact that tangible declines in health, cognition, or functional abilities have on HRQOL. The EQ-5D-5L-proxy and DEMQOL-Proxy-U were generally poor substitutes. Regardless of which proxy completed it, the EQ-5D-5L-proxy was typically more responsive than the DEMQOL-Proxy-U to changes in CDR, FAST, and CMAI, indicating that use of the DEMQOL-Proxy-U is not always justified. CONCLUSION: Disparities in the measurement properties of different utility measures mean that choices about how to measure utility in trials could affect economic evaluation outcomes and hence how resources are allocated for dementia care.


Assuntos
Cuidadores/psicologia , Demência/psicologia , Procurador/psicologia , Qualidade de Vida , Inquéritos e Questionários/normas , Idoso , Idoso de 80 Anos ou mais , Demência/economia , Feminino , Instituição de Longa Permanência para Idosos/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Índice de Gravidade de Doença , Reino Unido
15.
BMC Health Serv Res ; 19(1): 790, 2019 Nov 04.
Artigo em Inglês | MEDLINE | ID: mdl-31684943

RESUMO

BACKGROUND: Psychosocial interventions offer opportunities to improve care for people with dementia in care homes. However, implementation is often led by staff who are not well prepared for the role. Some interventions use external experts to support staff. However little is known about external expert, care home staff and manager perceptions of such support. This paper addresses this gap. METHODS: Multi-methods study within a process evaluation of a cluster randomised controlled trial of Dementia Care Mapping™ (DCM). Interviews were conducted with six external experts who also completed questionnaires, 17 care home managers and 25 care home staff responsible for DCM implementation. Data were analysed using descriptive statistics and template analysis. RESULTS: Three themes were identified: the need for expert support, practicalities of support and broader impacts of providing support. Expert support was vital for successful DCM implementation, although the five-days provided was felt to be insufficient. Some homes felt the support was inflexible and did not consider their individual needs. Practical challenges of experts being located at a geographical distance from the care homes, limited when and how support was available. Experts gained knowledge they were able to then apply in delivering DCM training. Experts were not able to accurately predict which homes would be able to implement DCM independently in future cycles. CONCLUSIONS: An external expert may form a key component of successful implementation of psychosocial interventions in care home settings. Future research should explore optimal use of the expert role.


Assuntos
Demência/terapia , Casas de Saúde/organização & administração , Psicoterapia/organização & administração , Demência/psicologia , Humanos , Avaliação de Processos em Cuidados de Saúde
16.
Int J Clin Pharm ; 41(5): 1314-1322, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31342248

RESUMO

Background Prescribing, dispensing and administering pro re nata (PRN; as needed or necessary, as determined by an individual) medicines to people with intermittent or short-term conditions is a potential area for medication errors and inappropriate prescribing and administration. In people with dementia, regular PRN medicines use can demonstrate good practice when appropriate or poor in situations where their use is not recommended. However, the frequency of PRN prescription and administration within long-term care settings (care homes) for people with dementia is largely unknown. A limited number of studies worldwide suggest variation between countries. Objective To describe the prescription and administration rates of PRN medicines for people with dementia in UK care homes. Setting Fifty UK care homes. Method Medication details were collected from review of residents' medicines records within the care home for the previous month. Main outcome measure Prescription and administration of PRN medicines for the treatment of behaviours associated with neuropsychiatric symptoms and pain. Results The most commonly prescribed PRN medicines were analgesics (35.3%), although lower levels of PRN prescription were observed compared to recent studies. The percentage of residents receiving PRN administrations varied, with 20% for antipsychotics, 50% for benzodiazepines, 59% for analgesics, and 85.7% for nonbenzodiazepine hypnotics being administered. Conclusion Further research is needed to understand the decision making in PRN prescription and administration within long-term care. The prescribing of potentially inappropriate medicines remains a problem in long-term care settings and pharmacists have a key role in reducing inappropriate polypharmacy by undertaking medication reviews that consider both regular and PRN medicines.


Assuntos
Demência/complicações , Prescrições de Medicamentos , Transtornos da Memória/complicações , Transtornos Mentais/tratamento farmacológico , Dor/tratamento farmacológico , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Demência/psicologia , Uso de Medicamentos , Feminino , Humanos , Prescrição Inadequada , Pacientes Internados , Assistência de Longa Duração , Masculino , Transtornos da Memória/psicologia , Transtornos Mentais/psicologia , Dor/psicologia , Fatores Socioeconômicos , Reino Unido
17.
Am J Alzheimers Dis Other Demen ; 34(6): 390-398, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31056923

RESUMO

This study explored intervention implementation within a pragmatic, cluster randomized controlled trial of Dementia Care Mapping™ (DCM) in UK care homes. DCM is a practice development tool comprised of a 5 component cycle (staff briefing, mapping observations, data analysis and reporting, staff feedback, and action planning) that supports delivery of person-centered care. Two staff from the 31 intervention care homes were trained in DCM and asked to deliver 3 cycles over a 15-month period, supported by a DCM expert during cycle 1. Implementation data were collected after each mapping cycle. There was considerable variability in DCM implementation fidelity, dose, and reach. Not all homes trained 2 mappers on schedule, and some found it difficult to retain mappers. Only 26% of homes completed more than 1 cycle. Future DCM trials in care home settings should consider additional methods to support intervention completion including intervention delivery being conducted with ongoing external support.


Assuntos
Demência/enfermagem , Pessoal de Saúde/educação , Casas de Saúde , Assistência Centrada no Paciente , Avaliação de Processos em Cuidados de Saúde , Melhoria de Qualidade , Seguimentos , Humanos , Assistência de Longa Duração/normas , Casas de Saúde/normas , Assistência Centrada no Paciente/normas , Melhoria de Qualidade/normas , Reino Unido
18.
BMC Geriatr ; 19(1): 37, 2019 02 08.
Artigo em Inglês | MEDLINE | ID: mdl-30736748

RESUMO

BACKGROUND: Psychosocial person-centred interventions are considered best practice for addressing complex behaviours and care needs such as agitation and anxiety, and for improving the quality of life of people with dementia in care homes. Dementia Care Mapping (DCM™) is an established practice development tool and process aimed to help care home staff deliver more person-centred care. To date, few studies have evaluated the efficacy of DCM™ and have found mixed results. These results are suggested to be the outcome of intervention implementation, which may be impacted by a range of factors. This study reports the barriers and facilitators to DCM™ implementation in care homes found during the process evaluation conducted as part of a randomized controlled trial. METHODS: Eighteen of the 31 DCM™ intervention care homes were recruited to participate in the embedded process evaluation. Semi-structured interviews were conducted with 83 participants, comprising care home managers, trained DCM™ users (mappers), expert external mappers, staff members, relatives, and residents. RESULTS: Barriers and facilitators to DCM™ implementation were found at the mapper level (e.g. motivation and confidence), the DCM™ intervention level (e.g. understanding of DCM™) and the care home level (e.g. staffing issues, manager support). Further barriers caused by the burden of trial participation were also identified (e.g. additional paperwork). CONCLUSIONS: Implementing DCM™ is complex and a greater consideration of potential barriers and facilitators in planning future studies and in practice could help improve implementation. TRIAL REGISTRATION: Current Controlled Trials ISRCTN82288852 , registered 16/01/2014.


Assuntos
Demência/terapia , Pessoal de Saúde/normas , Casas de Saúde/normas , Avaliação de Processos em Cuidados de Saúde/métodos , Avaliação de Processos em Cuidados de Saúde/normas , Instituições Residenciais/normas , Demência/psicologia , Feminino , Seguimentos , Pessoal de Saúde/psicologia , Humanos , Masculino , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/normas , Qualidade de Vida/psicologia , Autocuidado/métodos , Autocuidado/psicologia , Autocuidado/normas
19.
Clin Interv Aging ; 13: 165-177, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29416325

RESUMO

Dementia Care Mapping (DCM) is an observational tool set within a practice development process. Following training in the method, DCM is implemented via a cyclic process of briefing staff, conducting mapping observations, data analysis and report preparation, feedback to staff and action planning. Recent controlled studies of DCM's efficacy have found heterogeneous results, and variability in DCM implementation has been indicated as a potential contributing factor. This review aimed to examine the primary research evidence on the processes and the barriers and facilitators to implementing DCM as a practice development method within formal dementia care settings. PUBMED, PsycINFO, CINAHL, The Cochrane Library-Cochrane reviews, HMIC (Ovid), Web of Science and Social Care Online were searched using the term "Dementia Care Mapping". Inclusion criterion was primary research studies in any formal dementia care settings where DCM was used as a practice development tool and which included discussion/critique of the implementation processes. Assessment of study quality was conducted using the Mixed Methods Appraisal Tool. Twelve papers were included in the review, representing nine research studies. The papers included discussion of various components of the DCM process, including mapper selection and preparation; mapping observations; data analysis, report writing and feedback; and action planning. However, robust evidence on requirements for successful implementation of these components was limited. Barriers and facilitators to mapping were also discussed. The review found some consensus that DCM is more likely to be successfully implemented if the right people are selected to be trained as mappers, with appropriate mapper preparation and ongoing support and with effective leadership for DCM within the implementing organization/unit and in organizations that already have a person-centered culture or ethos. Future development of the DCM tool should consider ways to save on time taken to conduct DCM cycles. More research to understand the ingredients for effective DCM implementation is needed.


Assuntos
Terapia Comportamental/métodos , Demência/terapia , Assistência Centrada no Paciente/organização & administração , Pesquisa Qualitativa , Humanos
20.
Psychol Assess ; 27(4): 1182-94, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25894711

RESUMO

Previous research has suggested that defeat (conceptualized as a failed social struggle) and entrapment (conceptualized as a perceived inability to escape from aversive situations) form a single construct that reliably predicts psychopathological outcomes in clinical and community settings. However, scales designed to assess defeat and entrapment measure the constructs separately, whereas recent evidence suggests a single scale would be appropriate. Existing scales may also be too lengthy to have clinical utility. The present study developed and evaluated a scale that measured both defeat and entrapment. Exploratory and confirmatory factor analyses demonstrated that defeat and entrapment were best defined by a single factor, and 8 items were selected that best represented this construct to form the short scale. The scale had high internal consistency (α = .88 to .94), showed criterion validity with hopelessness (r = .45 to .93) and incremental validity for caregiver burden when controlling for depression and positive symptoms of psychosis when controlling for hopelessness (ß = .45 to .60). Additionally, the scale had excellent test-retest reliability using single measures absolute agreement intraclass correlation coefficients across 12 months (ricc = .88 to .92) within 4 samples: people with posttraumatic stress disorder, people with psychosis, care home employees, and people from community settings. The scale demonstrated known group validity through discrimination between clinical and nonclinical groups of participants. This scale could be implemented within therapeutic settings to help clinicians identify patients experiencing defeat and entrapment, and incorporate these factors into their clinical assessment and case formulations for treatment.


Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Depressão/psicologia , Escalas de Graduação Psiquiátrica , Transtornos Psicóticos/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Análise Fatorial , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicopatologia , Reprodutibilidade dos Testes , Adulto Jovem
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