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1.
BMC Geriatr ; 24(1): 364, 2024 Apr 23.
Artigo em Inglês | MEDLINE | ID: mdl-38654223

RESUMO

BACKGROUND: The National Institute for Health and Care Excellence guidelines state that psychosocial interventions should be the first line of treatment for people with dementia who are experiencing distress behaviours, such as agitation and depression. However, little is known about the characteristics and outcomes of psychosocial interventions or the facilitators and barriers to implementation on inpatient mental health dementia wards which provide care for people with dementia who are often experiencing high levels of distress. METHODS: A systematic search was conducted on MEDLINE, CINAHL, PsycINFO, Psychology and Behavioural Sciences Collection, and Scopus in May 2023, following PRISMA guidelines. Reference and citation searches were conducted on included articles. Peer-reviewed literature of any study design, relating to psychosocial interventions in inpatient mental health dementia wards, was included. One author reviewed all articles, with a third of results reviewed independently by a second author. Data were extracted to a bespoke form and synthesised using a narrative review. The quality of included studies was appraised using the Mixed Methods Appraisal Tool. RESULTS: Sixteen studies were included in the synthesis, which together included a total of 538 people with dementia. Study methods and quality varied. Psychosocial interventions delivered on wards included music therapy (five studies), multisensory interventions (four studies), multicomponent interventions (two studies), technology-based interventions (two studies), massage interventions (two studies) and physical exercise (one study). Reduction in distress and improvement in wellbeing was demonstrated inconsistently across studies. Delivering interventions in a caring and individualised way responding to patient need facilitated implementation. Lack of staff time and understanding of interventions, as well as high levels of staff turnover, were barriers to implementation. CONCLUSION: This review highlights a striking lack of research and therefore evidence base for the use of psychosocial interventions to reduce distress in this vulnerable population, despite current healthcare guidelines. More research is needed to understand which psychosocial interventions can reduce distress and improve wellbeing on inpatient mental health dementia wards, and how interventions should be delivered, to establish clinical and cost effectiveness and minimise staff burden.


Assuntos
Demência , Intervenção Psicossocial , Humanos , Demência/terapia , Demência/psicologia , Intervenção Psicossocial/métodos , Pacientes Internados/psicologia , Unidade Hospitalar de Psiquiatria
2.
BMJ Open ; 14(4): e080551, 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38589260

RESUMO

INTRODUCTION: Dementia is a complex medical condition that poses significant challenges to healthcare systems and support services. People living with dementia (PLWD) and their carers experience complex needs often exacerbated by social isolation and challenges in accessing support. Social prescribing (SP) seeks to enable PLWD and their carers to access community and voluntary sector resources to support them address such needs. Existing research, however, does not describe what SP interventions are currently in place in dementia care. Little is known about the needs these interventions are designed to address, the reasons that lead PLWD and their carers to participate in them, their effectiveness and the extent to which they could increase positive health outcomes if adopted and how. METHODS AND ANALYSIS: A complex intervention systematic review of SP for PLWD and/or their carers will be conducted using an iterative logic model approach. Six electronic (MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus and Cochrane/CENTRAL) and two grey literature databases (EThOS and CORE) were searched for publications between 1 January 2003 and June 2023, supplemented by handsearching of reference lists of included studies. Study selection, data extraction and risk of bias assessment, using Gough's Weight of Evidence Framework, will be independently performed by two reviewers. A narrative approach will be employed to synthesise and report quantitative and qualitative data. Reporting will be informed by the Preferred Reporting Items for Systematic Review and Meta-Analysis Complex Interventions extension statement and checklist. ETHICS AND DISSEMINATION: No ethical approval is required due to this systematic review operating only with secondary sources. Findings will be disseminated through peer-reviewed publications, conference presentations and meetings with key stakeholders including healthcare professionals, patient and carer groups, community organisations (eg, the Social Prescribing Network and the Evidence Collaborative at the National Academy for Social Prescribing), policymakers and funding bodies. PROSPERO REGISTRATION NUMBER: CRD42023428625.


Assuntos
Cuidadores , Demência , Humanos , Atenção à Saúde , Pessoal de Saúde , Metanálise como Assunto , Revisões Sistemáticas como Assunto
3.
Dementia (London) ; : 14713012241240906, 2024 Mar 28.
Artigo em Inglês | MEDLINE | ID: mdl-38545864

RESUMO

OBJECTIVE: A positive sense of self may be a key domain of psychological well-being for people living with dementia and therefore a legitimate target for psychosocial interventions in dementia care. Determining the effectiveness of such interventions often requires valid self-report instruments. This review aimed to investigate what aspects of self have been measured using self-report instruments in evaluating psychosocial interventions for people living with dementia and to explore the effectiveness of these interventions in terms of positive outcomes related to aspects of self. METHOD: A systematic search of the literature using five electronic databases and one register (CENTRAL) was conducted. A narrative synthesis and methodological quality assessment was completed for the included studies. RESULTS: A total of 24 studies were included in the review. Seven aspects of self were measured using a range of self-report instruments, many of which have not been validated for dementia. Aspects of self were; self-esteem, self-efficacy, self-compassion, self-growth, self-acceptance, self-management, and self-identity. Studies included a variety of interventions; however, the effectiveness of these interventions for these aspects of self was mixed. CONCLUSION: There is some evidence that psychosocial interventions improve specific aspects of self in dementia but further research to improve this evidence base is needed. Future research should also investigate and confirm the validity and reliability of existing self-report instruments that aim to measure aspects of self in dementia. Limitations and implications of the review are discussed.

4.
Aging Ment Health ; : 1-10, 2024 Jan 08.
Artigo em Inglês | MEDLINE | ID: mdl-38189283

RESUMO

OBJECTIVES: This study aimed to understand which character strengths are most important for people living with dementia and therefore which strengths-based psychological interventions could be most meaningful and acceptable. METHODS: A participatory design, utilising Delphi methodology, was incorporated into an iterative three stage framework: (1) literature reviewed for Positive Psychology (PP) interventions and patient public involvement to define the character strengths; (2) modified Delphi (N = 10) identified which character strengths are most important for living with dementia; (3) focus groups (N = 14) explored which PP interventions are most acceptable and meaningful. Qualitative data from the focus groups was analysed using thematic analysis. RESULTS: Love, kindness and humour were deemed the most important character strengths for living with dementia. Qualitative data from the focus groups was captured in three superordinate themes: (1) lack of opportunity not capacity; (2) key considerations of PP interventions for people living with dementia; and (3) potential benefits of PP interventions. CONCLUSIONS: Love, kindness and humour come naturally to people with dementia, but people may lack social opportunities to use these strengths. Therefore, a PP intervention promoting positive emotion, social relationships and connection to one's values appears most meaningful and acceptable as this may provide a social context to use and maintain these strengths.

5.
Dementia (London) ; 23(1): 41-68, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37969077

RESUMO

Background: On average, people with dementia live with 4.6 additional health conditions. Additionally, two thirds of carers of people with dementia are spouses, and are also likely to live with multimorbidity, given that older age is strongly associated with an increase in health conditions. Consequently, living with dementia and multimorbidity is often a shared experienced as a couple. However, research has not explored how living with both dementia and multimorbidity may impact on couplehood. Method: We conducted a qualitive evidence review using a meta-ethnographic approach, to answer the following question: In what way (if any) does living with dementia and multimorbidity impact on couplehood? No papers were found on couplehood, dementia and multimorbidity, therefore the review consists of a meta-synthesis of couples' experiences of living with dementia in relation to couplehood, with an additional search for any data related to health within the qualitative findings. Findings: Two major reciprocal themes and five subthemes were identified from the 14 study findings. 1. Change and adjustment in the relationship, which included themes around a sense of 'togetherness', change in roles and identity and developing shared coping strategies and 2. Commitment, which was encapsulated by themes on unconditional love and commitment to wedding vows. Health-related findings were limited but included the impact on emotional wellbeing and how other health conditions, rather than dementia, were attributed to a loss in physical sexual intimacy. Conclusion: This review found that couplehood was threatened when dementia symptoms progressed and couples experienced feelings of loss of independence and identity. However, a strong foundation of commitment, love and loyalty to each other developed over the course of the relationship, was the 'glue' that helped couples face dementia together. However, further research is needed to explore couples' experiences of living with both multimorbidity and dementia in relation to couplehood in order to develop holistic, relationship-centred interventions.


Assuntos
Adaptação Psicológica , Demência , Humanos , Estudos Transversais , Multimorbidade , Demência/psicologia , Antropologia Cultural , Pesquisa Qualitativa
6.
BMJ Open ; 13(12): e078248, 2023 12 07.
Artigo em Inglês | MEDLINE | ID: mdl-38149417

RESUMO

INTRODUCTION: Support following a dementia diagnosis in the UK is variable. Attending a Recovery College course with and for people with dementia, their supporters and healthcare professionals (staff), may enable people to explore and enact ways to live well with dementia. Recovery Colleges are established within mental health services worldwide, offering peer-supported short courses coproduced in partnership between staff and people with lived experience of mental illness. The concept of recovery is challenging in dementia narratives, with little evidence of how the Recovery College model could work as a method of postdiagnostic dementia support. METHODS AND ANALYSIS: Using a realist evaluation approach, this research will examine and define what works, for whom, in what circumstances and why, in Recovery College dementia courses. The ethnographic study will recruit five case studies from National Health Service Mental Health Trusts across England. Sampling will seek diversity in new or long-standing courses, delivery methods and demographics of population served. Participant observations will examine course coproduction. Interviews will be undertaken with people with dementia, family and friend supporters and staff involved in coproducing and commissioning the courses, as well as people attending. Documentary materials will be reviewed. Analysis will use a realist logic of analysis to develop a programme theory containing causal explanations for outcomes, in the form of context-mechanism-outcome-configurations, at play in each case. ETHICS AND DISSEMINATION: The study received approval from Coventry & Warwickshire Research Ethics Committee (22/WM/0215). Ethical concerns include not privileging any voice, consent for embedded observational fieldwork with people who may experience fluctuating mental capacity and balancing researcher 'embedded participant' roles in publicly accessible learning events. Drawing on the realist programme theory, two stakeholder groups, one people living with dementia and one staff will work with researchers to coproduce resources to support coproducing Recovery College dementia courses aligned with postdiagnostic services.


Assuntos
Demência , Serviços de Saúde Mental , Humanos , Medicina Estatal , Inglaterra , Antropologia Cultural , Demência/diagnóstico
9.
Health Expect ; 26(3): 1227-1235, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36934455

RESUMO

INTRODUCTION: An admission to a mental health ward is an uncertain and unexpected part of a person's journey with dementia and consequently, families require information about what to expect and how to prepare. This study aimed to establish the information needs of people with dementia and their families at the point of admission to a mental health ward and to collate existing ward information leaflets to explore if they meet these information needs. METHODS: This research was conducted in two parts: (1) a qualitative study using focus groups, one with people with dementia and family carers with lived experience of such an admission (n = 6), and another with Admiral Nurses (n = 6) to explore information needs at the point of admission. (2) Each National Health Service (NHS) mental health trust (n = 67) was asked to provide a copy of their ward information shared at admission. A total of 30 leaflets were received from 15 NHS trusts; after removing duplicates, 22 were included. A content analysis was conducted to evaluate to what extent leaflets met the information needs identified by focus groups. RESULTS: Two main categories 'honest, accurate and up-to-date information' and 'who is the information for' and four subcategories were derived from focus group data. Participants felt that people with dementia and their families were likely to have different information needs. Material for people with dementia needed to be in an accessible format. Information should cover the aim of the admission, a timeline of what to expect and details about how families will be involved in care. Practical information about what to pack and ward facilities was valued. Participants spoke about the need to consider the tone of the information, given that people are likely to be distressed. The information leaflets reviewed did not meet the information needs identified by focus group participants. CONCLUSIONS: People with dementia and family carers have different information needs at the point of admission to a mental health ward. Information provided to people with dementia needs to be in an accessible format with content relevant to these needs. Wards should aim to co-create information to ensure that they meet people's information needs. PATIENT OR PUBLIC CONTRIBUTION: This research was supported by a patient and public involvement (PPI) group of people with dementia and carers who have experience in mental health wards. The idea for the study came from the group and was motivated by their experiences. The PPI group helped with the design of the study and took part in the focus groups. The information generated has been written up in this paper, and the knowledge generated has also been used to co-create a guide for wards on writing their information leaflets and to support the co-creation of a public information leaflet by Dementia UK about mental health admissions for people with dementia.


Assuntos
Demência , Saúde Mental , Humanos , Cuidadores/psicologia , Medicina Estatal , Hospitalização , Demência/psicologia
10.
Front Psychiatry ; 14: 1093894, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36937714

RESUMO

Introduction: This study investigates family carers experiences of inpatient mental health care for people with dementia. A mental health inpatient admission for a person with dementia is usually considered when a person is distressed and this distress leads to behaviours that are assessed to be risky for the person or others. Methods: Participants included seven family carers whose relative with dementia had been cared for within a mental health ward in the United Kingdom UK within the last 5 years. Interviews were used to explore the circumstances that led to the admission, expectations of mental health care, and perceptions of care during the admission and support received by family carers. Results: Participants described their distress at the time of admission and how the process of admission sometimes added to their distress. Carers often felt excluded from their relatives care in hospital and many felt a loss of their rights. Participants felt that the mental health admission had a negative impact on their relative with dementia. Mental health law and legislation was difficult to navigate and carers were concerned about how much knowledge and understanding of dementia staff have. Discussion: Findings suggest that family carers may benefit from targeted support during their relatives admission. Mental health wards could do more to recognise the expertise in care and knowledge of the person with dementia of family carers and involve them in planning care. More research is needed to explore the experiences and outcomes of people with dementia during such admissions.

11.
Pilot Feasibility Stud ; 9(1): 34, 2023 Mar 03.
Artigo em Inglês | MEDLINE | ID: mdl-36869406

RESUMO

BACKGROUND: Cognitive problems associated with dementia affect a large proportion of older adults living in residential care. Knowledge of cognitive impairments is important for providing person-centred care (PCC). The impact of specific cognitive impairments on residents' needs is often overlooked in dementia training and information about residents' individual cognitive profiles are frequently underspecified in care-plans, potentially undermining the delivery of PCC. This can lead to reduced resident quality of life and increased distressed behaviours-a major cause of staff stress and burnout. The COG-D package was developed to fill this gap. Daisies provide a visual representation of a resident's individual cognitive strengths and weaknesses in a colourful flower (Daisy) representing five cognitive domains. By viewing a resident's Daisy, care-staff can flexibly adjust in-the-moment care-decisions and can consult Daisies in care-plans for longer-term planning. The primary aim of this study is to assess the feasibility of implementing the COG-D package in residential care homes for older adults. METHODS/DESIGN: This 24-month feasibility cluster randomized controlled trial involves a 6-month intervention of the use of Cognitive Daisies in 8-10 residential care homes for older adults after training of care staff on the use of Cognitive Daisies in daily care (basic training) and on conducting the COG-D assessments with residents (advanced training). The key feasibility outcomes include % residents recruited, % COG-D assessments completed, and % staff completing the training. Candidate outcome measures for residents and staff will be obtained at baseline, and at 6 and 9 months post-randomization. COG-D assessments of residents will be repeated 6 months after the first assessment. A process evaluation will assess intervention implementation and barriers and facilitators to this through care-plan audits, interviews and focus groups with staff, residents, and relatives. Feasibility outcomes will be analysed against progression criteria to a full trial. DISCUSSION: The results of this study will provide important information about the feasibility of using COG-D in care homes and will inform the design of a future large-scale cluster RCT to assess the effectiveness and cost-effectiveness of the COG-D intervention in care homes. TRIAL REGISTRATION: This trial was registered on 28/09/2022 (ISRCTN15208844) and is currently open to recruitment.

12.
Dementia (London) ; 22(1): 125-143, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36350191

RESUMO

BACKGROUND: Narratives of dementia can undermine the ability of people to live well. Positive psychology, concerned with the cultivation of personal strengths, is a model through which people's capacity to have positive experiences can be researched. This study explored the meanings and experiences of hope, a positive psychological construct found to facilitate well-being, in people with dementia. METHODS: People with dementia submitted poems about the meanings and their experiences of hope through an online platform. The submitted poems (n = 29) underwent thematic analysis. FINDINGS: There were three main themes: (1) "hope is light in the darkness" encapsulated the meaning ascribed to hope as a resource that spotlights what is still possible, (2) "poetry gives voice to experiences of hope" captured the role of poetry in communicating the otherwise elusive concept of hope, and (3)"peers uphold hope and cast away the darkness" captured that participants' hope was blocked by stigmatising views held and expressed by others but facilitated through positive social interactions. CONCLUSIONS: People are capable of having hope in the context of dementia, with hope being a uniquely functional strength that supports wellbeing. Health professionals, family and society have a clear role in supporting people with dementia to maintain their hope.


Assuntos
Demência , Humanos , Demência/psicologia , Narração , Nível de Saúde , Pessoal de Saúde
13.
J Multimorb Comorb ; 12: 26335565221128432, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36187908

RESUMO

Background: Older people and people with dementia experience a high prevalence of multiple health conditions. The terms 'comorbidity' and 'multimorbidity' are often used interchangeably to describe this, however there are key conceptual differences between these terms and their definitions. This has led to issues in the validity and comparability of research findings, potentially inappropriate intervention development and differences in quality of health care. Objective: To review how the terms 'comorbidity' and 'multimorbidity' are defined within peer-reviewed dementia research and propose an operational framework. Design: A scoping review of definitions within dementia research was carried out. Searches took place across five databases: Academic Search Premier, CINAHL Complete, MEDLINE, PsycARTICLES and PsycINFO. PRISMA-ScR guidelines were followed. Results: Content analysis revealed five key themes, showing significant overlap and inconsistencies from both within, and between, the comorbidity and multimorbidity definitions; 1. Number of conditions; 2. Type of health conditions; 3. The co-occurrence of conditions; 4. The inclusion of an index disease (or not); 5. Use of medical language. The analysis also revealed gaps in how the underlying concepts of the definitions relate to people with dementia living with multiple health conditions. Conclusion: This scoping review found that current definitions of comorbidity and multimorbidity are heterogeneous, reductionist and disease-focussed. Recommendations are made on the design of research studies including transparency and consistency of any terms and definitions used. A syndemic framework could be a useful tool for researchers, clinicians and policy makers to consider a more holistic picture of a person with dementia's health and wellbeing.

14.
Front Rehabil Sci ; 3: 952722, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36189033

RESUMO

Policy continues to emphasise the importance of wellbeing in dementia. However, there is a vital need for psychosocial interventions that can promote positive outcomes to enhance "living well with dementia". Our developing understanding of what people living with dementia report as being important to them, has resulted in new interpretations of what constitutes wellbeing including constructs such as "growth", "purpose" and "participation". These exciting and important constructs are not currently captured by outcome measures within dementia research. This limits our understanding of the value of psychosocial interventions. This paper explores the concept of participation and how continued participation in social life can make a difference to the rights of people living with dementia as citizens. We will firstly consider why participation is important for how we might measure outcomes in dementia research and care. Secondly, we will explore how we might measure participation. Finally, we will consider the value of participation as a psychosocial outcome in future research.

15.
Dementia (London) ; 21(7): 2351-2376, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-35939420

RESUMO

OBJECTIVE: Despite growing awareness of the importance of engagement with the natural world for people living with dementia, little is known about the impact specifically for people living independently in their own home. This review identifies, analyses and synthesises existing research, incorporating first-person narrative accounts of the benefits and potential challenges experienced in forging meaningful connections with the natural world. METHODS: Six databases were searched from February 2000 to February 2021. Relevant organisations and authors were contacted, and a hand search of included study reference lists was conducted. The findings of included studies were synthesised using a thematic analysis approach. FINDINGS: Sixteen studies were included: 13 qualitative and three mixed methods. Eight themes and three sub-themes were identified, revealing how contact with the natural world held a significance for people living with dementia, associated with a sense of pleasure, comfort, stimulation, freedom and meaning. Support and the use of adaptive strategies afforded opportunities for continued engagement with meaningful outdoor activities and the promotion of identity, independence, social interaction, enhanced wellbeing and quality of life for people living independently with dementia. CONCLUSION: Meaningful connections with the natural world offer far more than a 'breath of fresh air'. When support mechanisms are in place, engaging with the natural world can be a valuable arena for enablement and continuity, providing a sense of connectedness to self, place and others.


Assuntos
Demência , Humanos , Pesquisa Qualitativa , Qualidade de Vida
16.
BMC Nurs ; 21(1): 194, 2022 Jul 20.
Artigo em Inglês | MEDLINE | ID: mdl-35854261

RESUMO

BACKGROUND: People with dementia are most at risk of experiencing serious health related suffering, if they do not have a palliative care approach introduced early enough in the illness. It can be challenging for nurses to assess experienced needs of people, who are thought no longer able to self-report such as people with dementia. Assessment help to understand the care the patient and their family need promptly. It is unknown how nurses recognise holistic palliative care needs in people with dementia during routine care. METHODS: Scoping review where EMBASE, MEDLINE, CINAHL, PsycInfo databases, and references were searched with an advanced search strategy, which was built on three concepts (nurses, dementia, and nursing assessment) using corresponding Medical Subject Headings. Data were charted in a piloted extraction form, based on the assessment domains within the nursing process followed by summarise and synthesise results narratively. RESULTS: 37 out of 2,028 qualitative and quantitative articles published between 2000 and 2021, and relating to 2600 + nurses, were identified. Pain was sole focus of assessment in 29 articles, leaving 8 articles to describe assessment of additional needs (e.g., discomfort). Nurses working in a nursing home assess pain and other needs by observing the persons with dementia behaviour during routine care. Nurses in the acute care setting are more likely to assess symptoms with standard assessment tools at admission and evaluate symptoms by observational methods. Across settings, about one third of pain assessments are supported by person-centred pain assessment tools. Assessments were mostly triggered when the person with dementia vocalised discomfort or a change in usual behaviour was observed. Nurses rely on family members and colleagues to gain more information about needs experienced by people with dementia. CONCLUSION: There is a scarcity of evidence about techniques and methods used by nurses to assess needs other than pain experienced by people with dementia. A holistic, person-centred screening tool to aid real-time observations at the bedside and used in conversations with health care professionals and families/friends, may improve need recognition other than pain, to ensure holistic needs could then be addressed timely to improve care in people with dementia.

17.
Clin Gerontol ; : 1-20, 2022 Jul 27.
Artigo em Inglês | MEDLINE | ID: mdl-35897148

RESUMO

OBJECTIVES: Inpatient mental health beds for people with dementia are a limited resource. Practitioners need an understanding of this population to provide high-quality care and design services. This review examines the characteristics, care, and outcomes of people with dementia admitted to inpatient mental health services. METHODS: Systematic searches of key databases were undertaken up to November 2021. Findings were grouped into categories and then synthesized into a narrative review. RESULTS: The review identified 36 international papers, the majority of which were retrospective audits. The literature describes significant psychiatric and medical comorbidity and significant risk of change in residence and death associated with admission. CONCLUSIONS: We found a limited literature describing the characteristics, care, and outcomes of people with dementia in inpatient mental health services. The lack of research is striking given the complexity and vulnerability of this client group. More research is needed to describe the needs of this group, current and best practice to optimize care. CLINICAL IMPLICATIONS: Professionals working in inpatient mental health services need to be aware of the evidence base available, consider how they evaluate patient outcomes, review their staffing and skills mix, and seek the views of patients and relatives in improving services.

18.
Age Ageing ; 51(3)2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-35231095

RESUMO

OBJECTIVE: following the #BanBPSD campaign there has been critical interest in common terminology used for 'changes in behaviour' associated with dementia. However, commentaries and emerging studies have not fully considered family carer perspectives. This study explores the views of family carers on terminology and language for this paradigm. METHOD: a mixed methods online survey was conducted with family carers. Language preferences were scoped and examined with supporting open-ended questions that explored the reasons for choices. RESULTS: about 229 family carers completed the survey. Terms such as Challenging Behaviour, Behaviour that Challenges and Behavioural and Psychological Symptoms of dementia were mostly disliked. The most preferred term was a new concept called 'Behavioural and Emotional Expressions of Need' that few people had previously heard of. Overall, carers preferred positively construed, easily understood, person-centred terms that attributed changes in behaviour to unmet need, which also acknowledged the carer's role in management. CONCLUSIONS: given that carers are often the agents of change for this paradigm-where they may also be called on to act as proxy decision makers, it is important that professionals take time to explore their understandings and give due consideration to the language used when offering tailored interventions. These findings suggest that frequently used terms for changes in behaviour associated with dementia, such as Challenging Behaviour, BtC and BPSD, should be avoided.


Assuntos
Cuidadores , Demência , Cuidadores/psicologia , Demência/complicações , Demência/diagnóstico , Demência/terapia , Humanos , Idioma , Procurador , Inquéritos e Questionários
19.
Dementia (London) ; 21(1): 94-113, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34187203

RESUMO

Background: Current policy emphasises the role of digital technologies in facilitating the management of long-term conditions. While digital resources have been developed for carers, there has been little attention to their development for people with dementia. The Caregiverspro-MMD website was developed as a joint resource for people with dementia and carers, delivering access to information, informal content, games and peer support. Research Design and Methods: This study explored the experiences of dyads consisting of people with dementia and carers of using the website. Interviews and focus groups were conducted with 43 participants. Findings: Thematic analysis identified 10 subthemes grouped under three superordinate themes which highlight participants' experiences of and responses to the website functions; important aspects of the website design and delivery; and barriers to use. Discussion: Findings highlight the value of a credible information source which negated the need for arduous online searches, the pleasure associated with playing games and interacting with others online. However, participants were reluctant to share personal information online, preferring to create 'informal content' which celebrated everyday life, and were reluctant to 'friend' people online who they had not met in person. The importance of training and support to use the website was highlighted. Health problems, lack of interest or difficulties using technology, and time were all identified as barriers to use.


Assuntos
Cuidadores , Demência , Aconselhamento , Grupos Focais , Humanos
20.
Dementia (London) ; 21(1): 335-352, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34461753

RESUMO

RATIONALE: Supporting people to live well with dementia is an international government priority. People living with dementia experience a range of positive emotions despite the challenges associated with dementia. Further research is needed to explore how these positive experiences can be fostered to support well-being. There is empirical evidence of the benefits of gratitude in other clinical groups, but no studies have explored how gratitude is experienced by people living with dementia. METHODS: In this mixed-methods study, eight people living with dementia shared their experiences of gratitude through interviews and gratitude diaries. Qualitative data were analysed using interpretative phenomenological analysis. Quantitative data regarding diary use were analysed using descriptive statistics. FINDINGS AND CONCLUSIONS: Gratitude holds interpersonal and transpersonal meanings for people living with dementia, balanced with challenges of dementia and ageing. This study offers insight into the existence and relevance of gratitude for people living with dementia, highlighting the importance of using multiple methods in dementia research. Positive psychology interventions informed by these findings may be effective in supporting well-being for people with dementia.


Assuntos
Demência , Humanos , Psicologia Positiva , Pesquisa Qualitativa
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