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1.
BJPsych Open ; 10(5): e139, 2024 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-39103976

RESUMO

BACKGROUND: Only a third of people with dementia receive a diagnosis and post-diagnostic support. An eight session, manualised, modular post-diagnostic support system (New Interventions for Independence in Dementia Study (NIDUS) - family), delivered remotely by non-clinical facilitators is the first scalable intervention to improve personalised goal attainment for people with dementia. It could significantly improve care quality. AIMS: We aimed to explore system readiness for NIDUS-family, a scalable, personalised post-diagnostic support intervention. METHOD: We conducted semi-structured interviews with professionals from dementia care services; the Consolidated Framework for Implementation Research guided interviews and their thematic analysis. RESULTS: From 2022 to 2023, we interviewed a purposive sample of 21 professionals from seven English National Health Service, health and social care services. We identified three themes: (1) potential value of a personalised intervention - interviewees perceived the capacity for choice and supporting person-centred care as relative advantages over existing resources; (2) compatibility and deliverability with existing systems - the NIDUS-family intervention model was perceived as compatible with service goals and clients' needs, but current service infrastructures, financing and commissioning briefs constraining resources to those at greatest need were seen as barriers to providing universal, post-diagnostic care; (3) fit with current workforce skills - the intervention model aligned well with staff development plans; delivery by non-clinically qualified staff was considered an advantage over current care options. CONCLUSIONS: Translating evidence for scalable and effective post-diagnostic care into practice will support national policies to widen access to support and upskill support workers, but requires a greater focus on prevention in commissioning briefs and resource planning.

2.
Age Ageing ; 53(8)2024 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-39171389

RESUMO

INTRODUCTION: We report a mixed-methods process evaluation embedded within a randomised controlled trial. We aimed to test and refine a theory of change model hypothesising key causal assumptions to understand how the New Interventions for Independence in Dementia Study (NIDUS)-Family (a manualised, multimodal psychosocial intervention), was effective relative to usual care, on the primary outcome of Goal Attainment Scaling (GAS) over 1 year. METHODS: In 2021-2022, intervention-arm dyads completed an acceptability questionnaire developed to test causal assumptions. We conducted qualitative interviews with dyads and intervention facilitators, purposively selected for diverse follow-up GAS scores. We collected observational data from intervention session recordings. We thematically analysed data, then integrated qualitative and quantitative data. RESULTS: 174/204 (85.3%) dyads allocated to NIDUS-Family, fully completed it, 18 partially completed, while 12 received no intervention. We interviewed 27/192 (14%) of dyads receiving any sessions, and 9/10 facilitators; and observed 12 sessions. 47/192 (24.5%) of carers completed the acceptability questionnaire. We identified four themes: (A) 'Someone to talk to helps dyads feel supported'; (B) 'NIDUS-Family helps carers change their perspective'; (C) 'Personalisation helps people living with dementia maintain their identity' and (D) 'Small steps help dyads move forward'. CONCLUSION: Key causal pathway mechanisms were: a respectful, trusting and impartial relationship with the facilitator: supporting the development of meaningful goals and support to find manageable solutions. Core implementation factors were delivery of the modules from a consistent facilitator across regular sessions. Core contextual factors influencing these mechanisms were dyadic participation and understanding of abilities.


Assuntos
Cuidadores , Demência , Objetivos , Humanos , Demência/psicologia , Demência/terapia , Feminino , Masculino , Idoso , Cuidadores/psicologia , Idoso de 80 Anos ou mais , Intervenção Psicossocial/métodos , Pessoa de Meia-Idade , Apoio Social , Inquéritos e Questionários , Avaliação de Processos em Cuidados de Saúde
3.
Children (Basel) ; 11(8)2024 Jul 26.
Artigo em Inglês | MEDLINE | ID: mdl-39201836

RESUMO

BACKGROUND: Community champions have been employed across various settings to disseminate evidence-based public health information. The Building Babies' Brains programme trains champions to work with parents in communities, equipping them with child development knowledge and parental engagement strategies. We explored what makes community champions effective in distributing information to parents, including how the champion-parent relationship and champions' personal characteristics affect information dissemination. METHODS: Champions included both peers and professionals working with parents in target communities. We administered an online survey (n = 53) and follow-up interviews (n = 14) with champions, with representation from across all training cohorts. We conducted a realist-informed reflexive thematic analysis to generate themes in the data and highlight the contexts, mechanisms, and outcome patterns identified. RESULTS: We observed 15 Context-Mechanism-Outcome configurations across five themes: information sharing opportunities, information relevance, the nature of the champion-parent relationship, interaction expectations, and champion confidence. Our programme theory for how the community champion approach works identified that peer champions focused more on building rapport, modelling behaviours, and being a trusted community resource than direct information transfer. Professional champions, in contrast, showed greater expertise and confidence in discussing parenting practices directly. For both groups, traits such as friendliness and the ability to establish a trusting relationship enhanced effectiveness. CONCLUSIONS: This research identifies the impacts of champion role, characteristics, and the champion-parent relationship on the effectiveness of knowledge mobilisation in this context, with implications for training and recruitment of champions. Those using a champion model in comparable settings should ensure that champions have the necessary knowledge, skills, and confidence to engage parents and share information effectively.

4.
Lancet Healthy Longev ; 5(2): e141-e151, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38310894

RESUMO

BACKGROUND: Although national guidelines recommend that everyone with dementia receives personalised post-diagnostic support, few do. Unlike previous interventions that improved personalised outcomes in people with dementia, the NIDUS-Family intervention is fully manualised and deliverable by trained and supervised, non-clinical facilitators. We aimed to investigate the effectiveness of home-based goal setting plus NIDUS-Family in supporting the attainment of personalised goals set by people with dementia and their carers. METHODS: We did a two-arm, single-masked, multi-site, randomised, clinical trial recruiting patient-carer dyads from community settings. We randomly assigned dyads to either home-based goal setting plus NIDUS-Family or goal setting and routine care (control). Randomisation was blocked and stratified by site (2:1; intervention to control), with allocations assigned via a remote web-based system. NIDUS-Family is tailored to goals set by dyads by selecting modules involving behavioural interventions, carer support, psychoeducation, communication and coping skills, enablement, and environmental adaptations. The intervention involved six to eight video-call or telephone sessions (or in person when COVID-19-related restrictions allowed) over 6 months, then telephone follow-ups every 2-3 months for 6 months. The primary outcome was carer-rated goal attainment scaling (GAS) score at 12 months. Analyses were done by intention to treat. This trial is registered with the ISRCTN registry, ISRCTN11425138. FINDINGS: Between April 30, 2020, and May 9, 2021, we assessed 1083 potential dyads for eligibility, 781 (72·1%) of whom were excluded. Of 302 eligible dyads, we randomly assigned 98 (32·4%) to the control group and 204 (67·5%) to the intervention group. The mean age of participants with dementia was 79·9 years (SD 8·2), 169 (56%) were women, and 133 (44%) were men. 247 (82%) dyads completed the primary outcome, which favoured the intervention (mean GAS score at 12 months 58·7 [SD 13·0; n=163] vs 49·0 [14·1; n=84]; adjusted difference in means 10·23 [95% CI 5·75-14·71]; p<0·001). 31 (15·2%) participants in the intervention group and 14 (14·3%) in the control group experienced serious adverse events. INTERPRETATION: To our knowledge, NIDUS-Family is the first readily scalable intervention for people with dementia and their family carers that improves attainment of personalised goals. We therefore recommend that it be implemented in health and care services. FUNDING: UK Alzheimer's Society.


Assuntos
Demência , Masculino , Humanos , Feminino , Idoso , Idoso de 80 Anos ou mais , Demência/terapia , Objetivos , Cuidadores/psicologia , Terapia Comportamental
5.
BMC Geriatr ; 24(1): 188, 2024 Feb 26.
Artigo em Inglês | MEDLINE | ID: mdl-38408902

RESUMO

BACKGROUND: Over 850,000 people in the UK currently have dementia, and that number is expected to grow rapidly. One approach that may help slow or prevent this growth is personalized dementia prevention. For most people, this will involve targeted lifestyle changes. These approaches have shown promise in trials, but as of yet, the evidence for how to scale them to a population level is lacking. In this pre-implementation study, we aimed to explore stakeholder perspectives on developing system-readiness for dementia prevention programs. We focused on the APPLE-Tree program, one of several low-intensity, lifestyle-based dementia prevention interventions currently in clinical trials. METHODS: We conducted semi-structured interviews with health and social care professionals without previous experience with the APPLE-Tree program, who had direct care or managerial experience in services for older adults with memory concerns, without a dementia diagnosis. We used the Consolidated Framework for Implementation Research to guide interviews and thematic analysis. RESULTS: We interviewed 26 stakeholders: commissioners and service managers (n = 15) and frontline workers (n = 11) from eight NHS and 11 third sector organizations throughout England. We identified three main themes: (1) favorable beliefs in the effectiveness of dementia prevention programs in enhancing cognition and wellbeing and their potential to fill a service gap for people with memory concerns, (2) challenges related to funding and capacity to deliver such programs at organizations without staff capacity or higher prioritization of dementia services, and (3) modifications to delivery and guidance required for compatibility with organizations and patients. CONCLUSION: This study highlights likely challenges in scale-up if we are to make personalized dementia prevention widely available. This will only be possible with increased funding of dementia prevention activities; integrated care systems, with their focus on prevention, may enable this. Scale-up of dementia prevention programs will also require clear outlines of their core and adaptable components to fit funding, patient, and facilitator needs.


Assuntos
Demência , Idoso , Humanos , Demência/prevenção & controle , Inglaterra , Apoio Social
7.
Int J Older People Nurs ; 19(1): e12585, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37899684

RESUMO

BACKGROUND: Guidance and policy on personalised (or person-centred) care of older people living in care homes advocates that all residents must have their preferences considered, and that all care provided must be reasonably adjusted to meet the person's specific needs. Despite this, research that considers what matters to residents in terms of the care they receive is limited. OBJECTIVES: Our review aims to explore care home residents' lived experiences of personalised care and understand what really matters to them. METHODS: Six electronic databases (CINHAL, Medline (Ovid), Embase, PubMed, Web of Science & PsychInfo) and Google Scholar (grey literature) were searched to identify qualitative studies relating to personalised care in care home settings, which also included resident (voices) quotes. The literature review and synthesis are reported using eMERGe guidance. RESULTS: Fifteen studies met the inclusion criteria for our meta-ethnography. Four conceptual categories (the challenge of fitting into institutional care, the passing of time, holding onto a sense of self and a desire to feel at home) and two key concepts (creating a culture of purposeful living and caring and forming and maintaining meaningful & empowering relationships) were identified. Finally, a conceptual framework of understanding represents what personally matters to residents in terms of their care. CONCLUSION: Our meta-ethnography, guided by residents' lived experiences of personalised care, offers a new perspective of what personally matters to residents in terms of the care they receive. The conceptual framework of understanding highlights the importance of moving from an institutional position of doing for residents to a person-centred position of doing with residents. IMPLICATIONS FOR PRACTICE: Our findings highlight the importance of understanding the differences between personalised and person-centred care for policy and practice. Further considerations are required on how this might be applied through nurse and care home professionals' education and work practices.


Assuntos
Antropologia Cultural , Humanos , Idoso , Pesquisa Qualitativa
8.
Cureus ; 15(9): e44603, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37795070

RESUMO

Objectives Safety culture surveys have been widely used in healthcare for more than two decades predominantly as a tool for measuring the level of safety culture (as defined as the beliefs and attitudes that staff express about how their organisation ought to work and how it does in fact work). However, there is the potential for the survey process itself to influence the safety culture and working practices in departments and organisations. The objective of this study was to identify the mechanism by which these changes might occur. Design, setting and participants Mixed methods combining qualitative semi-structured interviews and quantitative scores from patient safety surveys. This evaluation was conducted across general practice, community and acute hospitals in two NHS regions in England; South West and Greater Manchester. The study was undertaken between 2015 and 2018 during the implementation of a series of Patient Safety Collaboratives. Safety, Communication, Operational Reliability, and Engagement (SCORE) surveys were administered in 15 units, followed by a staff debriefing and a second SCORE survey. Semi-structured interviews were conducted with clinicians (n=61). Results from the first and second surveys were compared in order to test for differences in responses. Sixty-one semi-structured interviews were conducted across participating units and thematically analysed.  Analysis and results Results from the first and second surveys were compared using chi-squared and Fisher's exact tests. Sixty-one semi-structured interviews were conducted across participating units and thematically analysed.  There was little change in responses between the first and second SCORE surveys. Within general practice there was some improvement in responses in three survey domains; however, these differences were not conclusive. The qualitative interview data demonstrated a beneficial effect on safety culture. Staff stated that the survey debriefings created a new safe space where problems could be discussed and improvement plans created.  Conclusions Safety culture surveys can improve safety culture within departments if they are followed by a process that includes debriefing the staff and working with them to develop improvement plans.

9.
Age Ageing ; 52(5)2023 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-37192505

RESUMO

BACKGROUND: Care homes are increasingly important settings for intervention research to enhance evidence-informed care. For such research to demonstrate effectiveness, it is essential that measures are appropriate for the population, setting and practice contexts. OBJECTIVE: To identify care home intervention studies and describe the resident outcome measures used. DESIGN: Scoping review. METHODS: We reviewed international care home research published from 2015 to August 2022. We searched MEDLINE, EMBASE, CINAHL and ASSIA. We included any intervention study conducted in a care home, reporting resident outcomes. We extracted resident outcome measures, organised these using the domains of an adapted framework and described their use. RESULTS: From 7,330 records screened, we included 396 datasets reported in 436 publications. These included 12,167 care homes and 836,842 residents, with an average of 80 residents per study. The studies evaluated 859 unique resident outcomes 2,030 times using 732 outcome measures. Outcomes were evaluated between 1 and 112 times, with 75.1% of outcomes evaluated only once. Outcome measures were used 1-120 times, with 68.4% of measures used only once. Only 14 measures were used ≥20 times. Functional status, mood & behaviour and medications were the commonest outcome domains assessed. More than half of outcomes were assessed using scales, with a fifth using existing records or administrative data. CONCLUSIONS: There is significant heterogeneity in the choice and assessment of outcomes for intervention research in care homes. There is an urgent need to develop a consensus on useful and sensitive tools for care homes, working with residents, families and friends and staff.


Assuntos
Instituição de Longa Permanência para Idosos , Internacionalidade , Avaliação de Resultados em Cuidados de Saúde , Pesquisa , Idoso , Humanos , Prática Clínica Baseada em Evidências , Conjuntos de Dados como Assunto , Projetos de Pesquisa
10.
Int J Geriatr Psychiatry ; 38(1): e5868, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36642866

RESUMO

OBJECTIVES: We culturally adapted STrAtegies for RelaTives (START), a clinically and cost-effective intervention for dementia family carers, for Black and South Asian families. It had previously been delivered to family carers around the time of diagnosis, when most people with dementia had very mild, mild or moderate dementia. METHODS: We interviewed a maximum variation sample of family carers (phase one; n = 15 South Asian; n = 11 Black) about what aspect of START, required cultural adaptation, then analysed it thematically using the Cultural Treatment Adaptation Framework then adapted it in English and into Urdu. Facilitators then delivered START individually to carers (phase two; n = 13 South Asian; n = 8 Black). We assessed acceptability and feasibility through the number of sessions attended, score for fidelity to the intervention and interviewing family carers about their experiences. We used the Hospital Anxiety and Depression Scale. to examine whether immediate changes in family carers' mental health were in line with previous studies. RESULTS: In phase one we made adaptations to peripheral elements of START, clarifying language, increasing illustrative vignettes numbers, emphasising privacy and the facilitator's cultural competence and making images ethnically diverse. In phase two 21 family carers consented to receive the adapted intervention; 12 completed ≥5/8 sessions; four completed fewer sessions and five never started. Baseline HADS score (n = 21) was 14.4 (SD = 9.8) but for those who we were able to follow up was 12.3 (SD 8.1) and immediately post-intervention was 11.3 (n = 10; SD = 6.1). Family carers were positive about the adapted START and continued to use elements after the intervention. CONCLUSIONS: Culturally adapted START was acceptable and feasible in South Asian and Black UK-based family carers and changes in mental health were in line with those in the original clinical trial. Our study shows that culturally inclusive START was also acceptable. Changes made in adaptations were relevant to all populations. We now use the adapted version for all family carers irrespective of ethnicity.


Assuntos
Cuidadores , Demência , Humanos , Povo Asiático , Cuidadores/psicologia , Demência/terapia , Saúde Mental , Reino Unido , População Negra
11.
BMJ Open ; 12(12): e066166, 2022 12 26.
Artigo em Inglês | MEDLINE | ID: mdl-36572489

RESUMO

INTRODUCTION: Most people living with dementia want to remain living in their own homes, and are supported to do so by family carers and homecare workers. There are concerns that homecare is often unable to meet the needs of this client group, with limited evidence regarding effective interventions to improve it for people living with dementia. We have developed a training and support programme for homecare workers (NIDUS-Professional) to be delivered alongside support sessions for people living with dementia and their family carers (NIDUS-Family). We aim to assess (1) its acceptability among homecare workers and employing agencies, and (2) the feasibility of homecare workers, people living with dementia and their family carers completing the outcomes of intervention in a future randomised controlled trial. METHODS AND ANALYSIS: This is a cluster-randomised (2:1) single-blind, multisite feasibility trial. We aim to recruit 60-90 homecare workers, 30-60 clients living with dementia and their family carers through 6-9 English homecare agencies. In the intervention arm, homecare staff will be offered six group sessions on video call over three months, followed by monthly group sessions over the subsequent three-month period. Outcome measures will be collected at baseline and at six months. ETHICS AND DISSEMINATION: The study received ethical approval on 7 January 2020 from the Camden & King's Cross Research Ethics Committee. Study reference: 19/LO/1667. Findings will be disseminated through a peer-reviewed journal, conference presentation and blog to research and clinical audiences; we will attend forums to present findings to participating homecare agencies and their clients. TRIAL REGISTRATION NUMBER: ISRCTN15757555.


Assuntos
Demência , Serviços de Assistência Domiciliar , Humanos , Demência/terapia , Estudos de Viabilidade , Método Simples-Cego , Cuidadores , Ensaios Clínicos Controlados Aleatórios como Assunto
12.
Dementia (London) ; 21(8): 2584-2600, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-36137761

RESUMO

BACKGROUND: Research has highlighted a need for more theoretical work in arts interventions, including the role of the dyad. This study aimed to test theories from a literature review on the impact of including carers in museum programmes for people with dementia, and develop a model which can be used in other programmes to consider the impact of including carers more broadly. METHODS: Using a realist evaluation approach, theory was developed through interviews and participant-observation at six museums in the UK. FINDINGS: The impacts of including carers fell into seven broad areas - caring responsibility, session function, controlling access, preventing engagement, comparisons and losses, long-term impact of in-the-moment activities, and reducing social isolation and opening up the museum. CONCLUSIONS: Including carers may have both unanticipated benefits and negative consequences, and greater attention is needed on how both carers and people with dementia can be supported in shared sessions. Carers should be viewed as participants of programmes, and can even be the main beneficiaries, even where the programme is ostensibly 'for' the person with dementia - it's not simply that carers are the enablers of, or barriers to, the impacts on the person with dementia.


Assuntos
Cuidadores , Demência , Humanos , Museus , Qualidade de Vida , Modelos Teóricos
13.
BMJ Open ; 12(5): e063356, 2022 05 24.
Artigo em Inglês | MEDLINE | ID: mdl-35613748

RESUMO

OBJECTIVES: Patient and public involvement (PPI) in health research is required by some funders and publications but we know little about how common it is. In this study we estimated the frequency of PPI inclusion in health research papers and analysed how it varied in relation to research topics, methods, funding sources and geographical regions. DESIGN: Cross-sectional. METHODS: Our sample consisted of 3000 research papers published in 2020 in a general health-research journal (BMJ Open) that requires a statement on whether studies included PPI. We classified each paper as 'included PPI' or 'did not include PPI' and analysed the association of this classification with location (country or region of the world), methods used, research topic (journal section) and funding source. We used adjusted regression models to estimate incident rate ratios of PPI inclusion in relation to these differences. RESULTS: 618 (20.6%) of the papers in our sample included PPI. The proportion of papers including PPI varied in relation to location (from 44.5% (95% CI 40.8% to 48.5%) in papers from the UK to 3.4% (95% CI 1.5% to 5.3%) in papers from China), method (from 38.6% (95% CI 27.1% to 50.1%) of mixed-methods papers to 5.3% (95% CI -1.9% to 12.5%) of simulation papers), topic (from 36.9% (95% CI 29.1% to 44.7%) of papers on mental health to 3.4% (95% CI -1.3% to 8.2%) of papers on medical education and training, and funding source (from 57.2% (95% CI 51.8% to 62.6%) in papers that received funding from the UK's National Institute for Health Research to 3.4% (95% CI 0.7% to 6.0%) in papers that received funding from a Chinese state funder). CONCLUSIONS: Most research papers in our sample did not include PPI and PPI inclusion varied widely in relation to location, methods, topic and funding source.


Assuntos
Participação do Paciente , Publicações , China , Estudos Transversais , Humanos , Participação do Paciente/métodos , Projetos de Pesquisa
14.
Health Soc Care Community ; 30(2): 592-601, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-32959473

RESUMO

We explore the views of managers' knowledge needs and use to optimise care practices and enhance the life experience for older people living, and staff working, in long-term care homes (with and without nursing). This paper contributes to previous research by offering insights into the knowledge types drawn upon and used by managers to inform efforts to better support gaining and mobilising knowledge. Using a pragmatic qualitative approach, we undertook 19 semi-structured interviews with managers and leaders in 15 care homes in the South West of England, varying in geographical location, size and type of ownership. We did a thematic analysis of the data using Framework Analysis. Our interpretations were informed by the existing literature on knowledge types. We identified three themes from our analysis as to managers' knowledge needs and use when implementing changes. First, views about training and formal reports or "explicit knowledge" consisting of the two sub-themes "gaining explicit knowledge" and "research knowledge". Second, perspectives relating to practical experience or "tacit knowledge" and judging the use of knowledge in particular cases or "phronesis". Third, the role of emotion in managers' knowledge needs and use. We found that having knowledge was positively valued by managers and leaders for improving care practices and enhancing the lives of people residing in care homes. Tacit knowledge and phronesis were particularly highly valued and we note challenges with the perceived applicability, relevance and use of research evidence. We identify that emotions are an important component within knowledge use and a need to further understand how to support the emotional wellbeing of managers so they can support care staff and residents. Greater consideration is needed as to how to optimise gaining and mobilising all knowledge types - "know-what," "know-how," "know-when" and "know-feel" - to benefit people living, and staff working, in care homes.


Assuntos
Assistência de Longa Duração , Casas de Saúde , Idoso , Inglaterra , Humanos , Pesquisa Qualitativa
15.
Dementia (London) ; 21(2): 426-441, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34969312

RESUMO

BACKGROUND AND OBJECTIVES: We engaged people living with dementia, family carers and health and social care professionals in co-designing two dementia care interventions: for family carers and people living with dementia (New Interventions for Independence in Dementia Study (NIDUS)-family and home-care workers (NIDUS-professional training programme). RESEARCH DESIGN AND METHODS: Over October 2019-March 2020, we invited public and patient (PPI) and professional members of our NIDUS co-design groups to complete the PPI Engagement Evaluation Tool (designed to assess engagement activities), and non-professional PPI members to participate in qualitative telephone interviews. We thematically analysed and integrated mixed-methods findings. RESULTS: Most (15/20; 75%) of the PPI members approached participated. We identified four themes: (1) Creating the right atmosphere: participants found group meetings positive and enabling, though one health professional was unsure how to position themselves within them; (2) Participants influencing the outcome: while most members felt that they had some influence, for one carer consultation seemed too late to influence; (3) Having the right information: several carers wanted greater clarity and more regular updates from researchers; (4) Unique challenges for people living with dementia: memory problems presented challenges in engaging with substantial information, and within a large group. DISCUSSION AND IMPLICATIONS: We reflect on the importance of providing accessible, regular updates, managing power imbalances between co-design group members with lived and professional experiences; and ensuring needs and voices of people living with dementia are prioritised. We encourage future studies to incorporate evaluations of co-design processes into study design.


Assuntos
Demência , Cuidadores , Humanos , Participação do Paciente , Apoio Social
16.
Trials ; 22(1): 865, 2021 Dec 02.
Artigo em Inglês | MEDLINE | ID: mdl-34857029

RESUMO

BACKGROUND: Most people living with dementia want to remain living in their own homes and are supported to do so by family carers. No interventions have consistently demonstrated improvements to people with dementia's life quality, functioning, or other indices of living as well as possible with dementia. We have co-produced, with health and social care professionals and family carers of people with dementia, a new intervention (NIDUS-family). To our knowledge, NIDUS-family is the first manualised intervention that can be tailored to personal goals of people living with dementia and their families and is delivered by facilitators without clinical training. The intervention utilizes components of behavioural management, carer support, psychoeducation, communication and coping skills training, enablement, and environmental adaptations, with modules selected to address dyads' selected goals. We will evaluate the effect of NIDUS-family and usual care on goal attainment, as measured by Goal Attainment Scaling (GAS) rated by family carers, compared to usual care alone at 12-month follow-up. We will also determine whether NIDUS-family and usual care is more cost-effective than usual care alone over 12 months. METHODS: A randomised, two-arm, single-masked, multi-site clinical trial involving 297 people living with dementia-family carer dyads. Dyads will be randomised 2:1 to receive the NIDUS-family intervention with usual care (n = 199) or usual care alone (n = 98). The intervention group will be offered, over 1 year, via 6-8 video call or telephone sessions (or face to face if COVID-19 restrictions allow in the recruitment period) in the initial 6 months, followed by telephone follow-ups every 1-2 months to support implementation, with a trained facilitator. DISCUSSION: Increasing the time lived at home by people living with dementia is likely to benefit lives now and in the future. Our intervention, which we adapted to include remote delivery prior to trial commencement due to the COVID-19 pandemic, aims to address barriers to living as well and as independently as possible that distress people living with dementia, exacerbate family carer(s) stress, negatively affect relationships, lead to safety risks, and frequently precipitate avoidable moves to a care home. TRIAL REGISTRATION: International Standard Randomised Controlled Trials Number ISRCTN11425138 . Registered on 7 October 2019.


Assuntos
COVID-19 , Demência , Cuidadores , Análise Custo-Benefício , Demência/diagnóstico , Demência/terapia , Humanos , Pandemias , Intervenção Psicossocial , Qualidade de Vida , SARS-CoV-2
17.
PLoS One ; 16(6): e0250410, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34077465

RESUMO

Family members remain the main care providers for the increasing numbers of people with dementia, and often become depressed or anxious. In an implementation research project, we aimed to widen access to Strategies for RelaTives (START), a clinically and cost-effective intervention for the mental health of family carers, by laying the foundations for its implementation in the third sector. We used the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework to guide implementation of START, a manual-based, individually-delivered, multicomponent eight-session coping strategy intervention. We interviewed a maximum variation sample of twenty-seven stakeholders from the English Alzheimer's Society (AS), about possible difficulties in management, training, and delivery of START. We trained and supervised three AS dementia support workers in different locations, to each deliver START to three family carers. Two researchers independently coded pre-intervention interviews for themes. We assessed intervention feasibility through monitoring delivery fidelity, rating audio-recordings from 1-5 (5 being high) and interviewing facilitators, family carers and AS managers about their experiences. We assessed effectiveness on family carers' mental health using the Hospital Anxiety and Depression Scale (HADS) before and after receiving START (scores 0-42). We changed START's format by reflecting carer diversity more and increasing carer stories prominence, but core content or delivery processes were unchanged. All carers received START and attended every session. The mean fidelity score was 4.2. Mean HADS-total score reduced from baseline 18.4 (standard deviation 7.4) to follow-up 15.8 (9.7). Six (67%) carers scored as clinically depressed on baseline HADS and 2 (22%) at follow-up. Facilitators and carers rated START positively. Appropriately experienced third sector workers can be trained and supervised to deliver START and it remains effective. This has the potential for widened access at scale.


Assuntos
Adaptação Psicológica , Ansiedade/epidemiologia , Cuidadores/psicologia , Demência/enfermagem , Depressão/epidemiologia , Família/psicologia , Implementação de Plano de Saúde , Adulto , Idoso , Ansiedade/psicologia , Depressão/psicologia , Medicina Baseada em Evidências , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Inquéritos e Questionários
18.
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
19.
Arts Health ; 13(1): 1-19, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-33538657

RESUMO

Background: "In the moment" museum programmes for people with dementia (PwD) are an increasingly popular way of supporting people to live well. Most programmes include carers, though it is not well understood what effects, if any, their inclusion has. This review aimed to understand how including carers in museum programmes impacts the PwD, the carer, and the relationship between them. Methods: A realist review of peer-reviewed and grey literature was conducted to develop theory in answer to the research questions. Results: Twenty-three documents were included and 15 theory statements were developed within four themes: seeing the PwD in a new way, shared respite, excess disability, and reduced social isolation. Conclusions: As both positive and negative impacts were found, it is important to consider that programmes may not be beneficial for all dyads. The review offers recommendations to support positive outcomes for dyads, highlights gaps in the literature, and suggestions for further research.


Assuntos
Cuidadores , Demência , Museus , Humanos
20.
Ageing Res Rev ; 62: 101113, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32534025

RESUMO

It is unclear what non-pharmacological interventions to prevent cognitive decline should comprise. We systematically reviewed lifestyle and psychosocial interventions that aimed to reduce cognitive decline in healthy people aged 50+, and people of any age with Subjective Cognitive Decline or Mild Cognitive Impairment. We narratively synthesised evidence, prioritising results from studies rated as at lower Risk of Bias (ROB) and assigning Centre for Evidence Based Medicine grades. We included 64 papers, describing: psychosocial (n = 12), multi-domain (n = 10), exercise (n = 36), and dietary (n = 6) interventions. We found Grade A evidence that over 4+ months: aerobic exercise twice weekly had a moderate effect on global cognition in people with/ without MCI; and interventions that integrate cognitive and motor challenges (e.g. dance, dumb bell training) had small to moderate effects on memory or global cognition in people with MCI. We found Grade B evidence that 4+ months of creative art or story-telling groups in people with MCI; 6 months of resistance training in people with MCI and a two-year, dietary, exercise, cognitive training and social intervention in people with or without MCI had small, positive effects on global cognition. Effects for some intervention remained up to a year beyond facilitated sessions.


Assuntos
Disfunção Cognitiva , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Cognição , Disfunção Cognitiva/prevenção & controle , Exercício Físico , Humanos , Estilo de Vida
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