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1.
Int J Geriatr Psychiatry ; 39(7): e6120, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38972859

RESUMO

OBJECTIVES: The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context. METHODS: Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12. RESULTS: Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors. CONCLUSIONS: Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.


Assuntos
Cuidadores , Demência , Grupos Focais , Motivação , Humanos , Quênia , Cuidadores/psicologia , Demência/enfermagem , Demência/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Idoso , População Rural , Família/psicologia , Pesquisa Qualitativa
2.
Int J Geriatr Psychiatry ; 39(5): e6101, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38752797

RESUMO

OBJECTIVES: This systematic review and meta-analysis aimed to determine the prevalence of loneliness and social isolation among informal carers of individuals with dementia and to identify potential influencing factors. METHODS: We conducted a comprehensive search across 10 electronic databases, including PubMed, Cochrane, Embase, Web of Science, PsycINFO, CINAHL, Scopus, Chinese Biomedical, China National Knowledge Internet, and WANFANG. Our search strategy covered the inception of the databases up to September 16, 2023, with an updated search conducted on March 8, 2024. Prevalence estimates of loneliness and social isolation, presented with 95% confidence intervals, were synthesized through meta-analysis. Subgroup analyses and meta-regression were employed to explore potential moderating variables and heterogeneity. RESULTS: The study encompassed 27 research papers involving 11,134 informal carers from 17 different countries. The pooled prevalence of loneliness among informal carers of individuals with dementia was 50.8% (95% CI: 41.8%-59.8%), while the pooled prevalence of social isolation was 37.1% (95% CI: 26.7%-47.6%). Subgroup analyses and meta-regression indicated that various factors significantly influenced the prevalence of loneliness and social isolation. These factors included the caregiving setting, study design, the intensity of loneliness, geographical location (continent), data collection time, and the choice of assessment tools. CONCLUSIONS: This study underscores the substantial prevalence of loneliness and social isolation among informal carers of individuals with dementia. It suggests that policymakers and healthcare providers should prioritize the development of targeted interventions and support systems to alleviate loneliness and social isolation within this vulnerable population.


Assuntos
Cuidadores , Demência , Solidão , Isolamento Social , Humanos , Solidão/psicologia , Demência/psicologia , Demência/enfermagem , Isolamento Social/psicologia , Cuidadores/psicologia , Prevalência
3.
BMC Psychiatry ; 24(1): 452, 2024 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-38890607

RESUMO

BACKGROUND: Getting lost with family members who have dementia is a significant source of stress for family caregivers. In Taiwan, family caregivers develop strategies to deal with dementia persons who may get lost. This study aimed to explore the experiences of family caregivers caring for persons with dementia who have been lost outside the home. METHODS: A descriptive phenomenological method was used. The COREQ checklist was used to ensure the explicit reporting of data. A total of 20 family caregivers caring for persons with dementia who were lost outside their homes were selected from hospital outpatient clinics and a day care center in northern Taiwan using purposive sampling. Data were analyzed using the Giorgi analysis method. RESULTS: Five main themes emerged: (i) surprised persons with dementia lost outside, (ii) using strategies to prevent persons with dementia from getting lost, (iii) using strategies to find lost persons with dementia, (iv) exhaustion in long-term care persons with dementia, and (v) coping with the care load. It was found that family caregivers were surprised, nervous, and worried about persons with dementia being lost outside. They used the first strategy to supervise persons with dementia to prevent external losses. In addition, long-term supervision of persons with dementia led to mental exhaustion in the family caregivers. Finally, the family caregivers learned about loss prevention strategies and obtained family support and care replacement workers to reduce the care burden. CONCLUSIONS: It is essential to teach family caregivers early to prevent persons with dementia from losing external strategies. Nurses also provide long-term care services to reduce the care burden on family caregivers.


Assuntos
Adaptação Psicológica , Cuidadores , Demência , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Demência/enfermagem , Demência/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Taiwan , Família/psicologia , Adulto , Estresse Psicológico/psicologia , Idoso de 80 Anos ou mais
4.
Nurs Res ; 73(4): 320-327, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38905623

RESUMO

BACKGROUND: Research involvement and engagement is a vital aspect of nursing practice. However, research in dementia care remains limited compared to research focused on finding a cure, presenting a significant gap that specialist dementia nurses (Admiral Nurses) can help bridge by participating in research themselves and facilitating recruitment to research. OBJECTIVES: This study aimed to assess the research involvement and support needs of Admiral Nurses and identify factors affecting their participation in research. This research is particularly timely as Dementia UK has launched its first research strategy, which necessitates strengthening research capacity within Admiral Nursing. METHODS: We used a mixed methods convergent parallel synthesis design, simultaneously collecting quantitative and qualitative data. An online survey was conducted in January 2023, targeting current Admiral Nurses across the United Kingdom. The survey included questions addressing demographics, research experience, goals, barriers, facilitators, and support needs. Data analysis involved descriptive statistics, frequencies, univariate analyses, and thematic analysis. RESULTS: A positive relationship was found between the highest level of academic achievement and current or previous research involvement, as well as interest in becoming involved in research in the future. Although most nurses recognized the importance of research, only half reported current or past research involvement, indicating a need for increased support. A lack of access and opportunities for peer discussion hindered engagement with research findings. Time constraints, lack of support, and low confidence were major barriers to research involvement. Support needs varied but included mentorship, coaching, and the potential for a community of practice for research. DISCUSSION: This survey of Admiral Nurses sheds light on their research involvement, support needs, and barriers to participation. Recognizing the significance of research while identifying challenges and support requirements is crucial for enhancing research capacity among these specialized nurses. This study contributes valuable insights into the world of specialist dementia nursing and lays the foundation for future strategies to increase research engagement in this field.


Assuntos
Demência , Pesquisa em Enfermagem , Humanos , Demência/enfermagem , Reino Unido , Feminino , Masculino , Inquéritos e Questionários , Adulto , Pessoa de Meia-Idade , Atitude do Pessoal de Saúde
5.
Aging Ment Health ; 28(7): 977-984, 2024 07.
Artigo em Inglês | MEDLINE | ID: mdl-38217299

RESUMO

Objectives: The aim of this study was to explore unpaid carers' experiences of supporting people with dementia to use social media.Methods: Unpaid carers (n = 234) responded to an online survey about their attitudes towards people with dementia using social media and any experiences supporting this usage. Responses to closed questions were analysed using frequency analysis; qualitative data were analysed thematically.Results: Fifty-five carers (23.5%) cared for someone with dementia who used social media. Thematic analysis produced four themes: (1) carers as social media navigators; (2) social media supports care; (3) carers as social media guardians; and (4) labour-intensive work. Carers valued the social connectivity and stimulation social media provided but remained vigilant about online safety. They carefully managed the online experiences of people with dementia, balancing perceived benefits with safety, security, and caring demands.Conclusions: These findings shed light on the complexities of caring in the digital age. Many carers are supporting people with dementia in using social media, but there is little guidance on how best to do this. As older adults continue to embrace social media, carers, support organisations, and policymakers must adapt and work with technology developers to ensure safe and supportive online experiences.


Assuntos
Cuidadores , Demência , Mídias Sociais , Humanos , Cuidadores/psicologia , Demência/enfermagem , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Adulto , Apoio Social , Pesquisa Qualitativa , Inquéritos e Questionários , Idoso de 80 Anos ou mais
6.
Aging Ment Health ; 28(7): 985-994, 2024 07.
Artigo em Inglês | MEDLINE | ID: mdl-38356118

RESUMO

OBJECTIVES: This research project investigated how family carers in Norway experienced delivering iCST, their need for supervision and the potential for co-occupation. METHODS: Reflexive thematic analysis was used to understand the experiences of 11 carers using iCST for 8 wk. Three semi-structured interviews were conducted with each participant, including a pre-assessment of caregiver burden and a rating of dementia severity. RESULTS: Most carers described the manual as self-instructive. Some felt overwhelmed when starting iCST. It was important to plan and individualise the sessions to the specific needs of the person with dementia. After delivering iCST the carers described new insights into the person with dementia's resources and challenges. Obstacles to doing iCST were related to the context, the manual or to specific challenges linked to the person with dementia or to the carer. Most participants described positive experiences, in which shared interaction, engagement and mastery were common. CONCLUSION: When the carer understands the iCST programme as a tool and adapts it to the specific needs of the person with dementia then co-occupation and positive interactions happen. However, some carers would benefit from supervision and the iCST programme did not address all persons with dementia.


Assuntos
Cuidadores , Terapia Cognitivo-Comportamental , Demência , Pesquisa Qualitativa , Humanos , Cuidadores/psicologia , Noruega , Masculino , Feminino , Demência/terapia , Demência/enfermagem , Idoso , Pessoa de Meia-Idade , Terapia Cognitivo-Comportamental/métodos , Idoso de 80 Anos ou mais , Manuais como Assunto , Adulto
7.
Aging Ment Health ; 28(7): 969-976, 2024 07.
Artigo em Inglês | MEDLINE | ID: mdl-38100598

RESUMO

OBJECTIVES: Research has shown the relevance of stress and coping factors in explaining caregivers' insomnia symptoms. However, few attempts have been made to empirically test an integrative model for insomnia severity in family caregivers of people with dementia. The aim of this study was to test such a model, in which insomnia severity is proposed to be influenced by predisposing factors, precipitated by stressors, and perpetuated by behaviors to cope with these stressors. METHODS: 311 family caregivers of people with dementia were assessed for variables categorized as predisposing (e.g. female gender), precipitating (e.g. care-recipient's behavioral and psychological symptoms of dementia [BPSD]), and perpetuating factors (e.g. sleep aids). A theoretical model was developed and then statistically tested using structural equation modelling, analyzing the direct and indirect effects of the assessed variables on caregivers' insomnia severity. RESULTS: Distress, sleep aids, and experiential avoidance showed a direct association with insomnia severity. Female gender, younger age, cognitive fusion, leisure activities, dysfunctional thoughts, frequency and distress caused by care-recipient's BPSD showed indirect associations with insomnia severity. The model explained 22% of the variance of caregivers' insomnia severity. CONCLUSION: The results provide additional empirical support for the importance of predisposing, precipitating and perpetuating factors associated with caregivers' insomnia severity. The integrative model we propose may also be useful for developing interventions targeting insomnia symptoms in family dementia caregivers.


Assuntos
Cuidadores , Demência , Índice de Gravidade de Doença , Distúrbios do Início e da Manutenção do Sono , Humanos , Cuidadores/psicologia , Feminino , Masculino , Distúrbios do Início e da Manutenção do Sono/psicologia , Demência/enfermagem , Demência/psicologia , Idoso , Pessoa de Meia-Idade , Idoso de 80 Anos ou mais , Adaptação Psicológica , Adulto , Estresse Psicológico/psicologia , Família/psicologia , Modelos Psicológicos
8.
J Adv Nurs ; 80(8): 3103-3118, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38197503

RESUMO

AIM: To describe uncertainty in surrogate decision-making regarding end-of-life care for people with dementia using Mishel's reconceptualized uncertainty in illness theory. DESIGN: Integrative literature review using Whittemore and Knafl's approach. DATA SOURCES: PubMed, CINAHL, EMBASE, Scopus and Web of Science were searched using terms such as uncertainty/unpredictability, decision-making/advance care planning/end-of-life care planning, surrogate/family/caregiver/proxy and dementia. The search was initially conducted on 28 September 2021 and updated on 31 July 2023. REVIEW METHODS: Through systematic screening, 20 research articles were included in the analysis. Content related to uncertainty in surrogate decision-making regarding end-of-life care was extracted and analysed, focusing on the reconceptualized uncertainty in illness theory. RESULTS: First, surrogate uncertainty exists in various areas of surrogate decision-making regarding end-of-life care. Second, antecedents of surrogate uncertainty include numerous intrinsic and extrinsic factors. Third, surrogates exhibited some negative psychological responses to uncertainty but continually processed and structured their uncertainty through certain approaches, leading them to grow as decision-makers. Finally, research-based evidence on surrogates' processing of uncertainty and shifts to new life perspectives remains limited. CONCLUSION: Surrogates' uncertainty in decision-making regarding end-of-life care for people with dementia is well characterized using the reconceptualized uncertainty in illness theory. Healthcare providers should help surrogates manage their uncertainty in surrogate decision-making more constructively throughout the dementia trajectory. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The findings highlight the importance of assessing how surrogates process uncertainty and gauging how to help them process uncertainty and transition to new life perspectives. IMPACT: This review contributes to healthcare professionals' understanding of surrogates' uncertainty in end-of-life care planning for people with dementia, especially what they are uncertain about, what influences their uncertainty and how they process it. REPORTING METHOD: This study adheres to the PRISMA reporting guidelines. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.


Assuntos
Tomada de Decisões , Demência , Procurador , Assistência Terminal , Humanos , Demência/psicologia , Demência/enfermagem , Demência/terapia , Assistência Terminal/psicologia , Incerteza , Procurador/psicologia , Planejamento Antecipado de Cuidados , Idoso , Cuidadores/psicologia , Masculino , Feminino , Idoso de 80 Anos ou mais
9.
BMC Med Educ ; 24(1): 677, 2024 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-38890662

RESUMO

BACKGROUND: Dementia is a prevalent global health issue, necessitating comprehensive education for healthcare practitioners and students. Nursing and pharmacy students, provide support across healthcare settings often working as frontline caregivers. Therefore, it is imperative to equip these students with a profound understanding of dementia. The aim of this study was to evaluate whether a serious dementia game co-designed with stakeholders, students, and people living with dementia improved the attitudes of nursing and pharmacy students. METHODS: A pretest-posttest design was used to assess the attitudes of health professions students (nursing and pharmacy) towards dementia. The Approaches to Dementia Questionnaire (ADQ) was administered before and after playing a serious Dementia Game. The ADQ measured the total score, Hope subscale, and Recognition of Personhood subscale. Matched pairs t-test was used for analysis conducted with IBM SPSS statistics 27. RESULTS: A diverse cohort of 505 participants from one university in Northern Ireland participated, with 461 matched pairs used for analysis. Both nursing and pharmacy students demonstrated a significant increase in overall dementia attitudes post-gameplay, with nursing students showing an increase from 79.69 to 83.59 and pharmacy students from 75.55 to 79.86. Subscales for Hope (Nursing = 28.77 to 31.22, Pharmacy = 26.65 to 29.20). and Recognition of Personhood also exhibited significant improvement (Nursing = 50.93 to 52.38, Pharmacy = 48.89 to 50.67). Demographic data revealed predominantly female participants, a lack of personal connections to dementia, and varied training experiences. DISCUSSION: The study highlights the efficacy of the serious Dementia Game in enhancing attitudes to dementia amongst health professions students, indicating its potential as an educational tool. The study contributes to the growing body of evidence supporting serious games and gamification in healthcare education.


Assuntos
Atitude do Pessoal de Saúde , Demência , Estudantes de Enfermagem , Humanos , Demência/enfermagem , Masculino , Feminino , Irlanda do Norte , Estudantes de Enfermagem/psicologia , Adulto , Estudantes de Farmácia/psicologia , Adulto Jovem , Conhecimentos, Atitudes e Prática em Saúde , Inquéritos e Questionários , Conscientização
10.
J Clin Nurs ; 33(8): 2849-2884, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38544319

RESUMO

AIM: To synthesise evidence from the literature on hospital nurses' perceived challenges and opportunities in the care of people with dementia. BACKGROUND: People with dementia often have longer lengths of hospital stay and poorer health outcomes compared to those without dementia. Nurses play a pivotal role in the care of people with dementia. However, there is a scarcity of systematic reviews that synthesise the challenges and opportunities they perceive. METHODS: A mixed-methods systematic review was conducted with a database search covering Ageline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Emcare, Embase, Medline, PsycINFO, ProQuest, Scopus and Web of Science in April 2022. In total, 27 articles that met the selection criteria were critically reviewed and included in this systematic review. Data from the selected articles were extracted and synthesised using a convergent segregated approach. RESULTS: Three main themes and eight subthemes were identified. Theme 1 described nurse-related factors consisting of the lack of capability in dementia care, experiencing multiple sources of stress and opportunities for nurses to improve dementia care. Theme 2 revealed people living with dementia-related factors including complex care needs and the need to engage family carers in care. Theme 3 explained organisation-related factors comprising the lack of organisational support for nurses and people with dementia and opportunities for quality dementia care. CONCLUSION: Hospital nurses experience multidimensional challenges in the care of people with dementia. Opportunities to overcome those challenges include organisational support for nurses to develop dementia care capability, reduce their stress and partner with the family caregivers. RELEVANCE TO CLINICAL PRACTICE: Hospitals will need to build an enabling environment for nurses to develop their capabilities in the care of people with dementia. Further research in empowering nurses and facilitating quality dementia care in acute care hospitals is needed. REPORTING METHOD: The review followed the PRISMA 2020 checklist. PATIENT OR PUBLIC CONTRIBUTION: No.


Assuntos
Demência , Recursos Humanos de Enfermagem Hospitalar , Humanos , Demência/enfermagem , Recursos Humanos de Enfermagem Hospitalar/psicologia , Atitude do Pessoal de Saúde , Feminino
11.
J Clin Nurs ; 33(8): 3224-3235, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38590077

RESUMO

AIM: To understand nurses' knowledge, beliefs and experiences affect pain management practices in hospitalised persons living with dementia (PLWD). DESIGN: Naturalistic inquiry using qualitative descriptive design. METHODS: Semi-structured interviews were conducted with 12 registered nurses who worked in one acute care hospital in Southern California from October to November 2022. Data were analysed using content analysis to identify themes. RESULTS: Two themes were developed: improvising pain assessment, which included how pain was documented, and administration hesitancy referring to nurse's concerns about PLWD's confusion. Nurses described the challenges of assessing pain in hospitalised PLWD particularly if they were non-verbal and/or demonstrating responsive behaviours. Nurse's years of experience, dementia stigma, and their unconscious biases affected nurses' pain management practices. CONCLUSIONS: The study findings highlight the complex challenges of pain management in hospitalised PLWD that are exacerbated by nurses' knowledge deficits, negative stereotypical beliefs, dementia stigma and unconscious biases towards older people that contributes to undermanaged pain in hospitalised PLWD. IMPLICATIONS: A comprehensive strategy using an implementation framework is needed to address nurse's knowledge gaps, unconscious bias, dementia stigma and techniques that enhance communication skills is suggested. Building a foundation in these areas would improve pain management in hospitalised PLWD. IMPACT: Improving pain management in hospitalised PLWD would improve the quality of life, decrease hospital length of stay, prevent readmissions, and improve nurse satisfaction. REPORTING METHOD: The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ). PATIENT CONTRIBUTIONS: Improving pain management in hospitalised PLWD would prevent long term confusion, episodes of delirium and improve quality of life as they recover from their acute illness for which they required hospital care.


Assuntos
Demência , Conhecimentos, Atitudes e Prática em Saúde , Manejo da Dor , Pesquisa Qualitativa , Humanos , Demência/enfermagem , Manejo da Dor/métodos , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Recursos Humanos de Enfermagem Hospitalar/psicologia , California , Hospitalização
12.
J Clin Nurs ; 33(8): 3089-3100, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38716873

RESUMO

AIMS: Simulation offers a feasible modality to prepare nurses for challenges communicating with patients with dementia. Elderspeak communication is speech that sounds like baby talk and can lead to rejection of care by patients with dementia. However, it is unknown if simulation can be used to capture elderspeak communication in dementia care. The purpose of this mixed-methods study was to determine if simulation accurately captures elderspeak communication by nursing staff in hospital dementia care. DESIGN: A 3-part mixed-methods design in which (1) three dementia care simulations were designed and validated by a panel of experts, (2) communication by nursing staff completing each simulation was quantitatively compared to communication during actual patient care, and (3) views on the realism were explored using within- and across-case coding. METHODS: Three simulations using different modalities (manikin, role-play, and standardised patient) were designed and validated with eight experts using the Lynn Method. Ten nursing staff were audio-recorded and their communication was coded for elderspeak communication. Results for each simulation were compared using Wilcoxon signed-rank test to recordings taken during actual dementia care encounters. Debriefings were coded for realism and results were converged. RESULTS: The average time using elderspeak during naturalistic care was 29.9% (SD = 20.9%) which did not differ from the average amount of elderspeak used across the three simulations modalities which ranged from 29.1% to 30.4%. Qualitative results suggested a lack of realism with the manikin condition and the nursing staff indicated preference for the simulation with the standardised patient. CONCLUSIONS: Communication elicited in the dementia care simulations was congruent to communication produced in actual dementia care but preference was for the standardised patient. IMPLICATIONS FOR PATIENT CARE: Elderspeak communication can be accurately produced in the simulated environment which indicates that simulation is a valid method for person-centred communication training in nursing staff. IMPACT: Simulation offers a feasible modality to prepare nurses for challenges communicating with patients with dementia. Elderspeak communication is speech that sounds like baby talk and can lead to rejection of care by patients with dementia. However, it is unknown if simulation can be used to capture elderspeak communication in dementia care. Elderspeak communication captured in the simulated environment was congruent to communication nursing staff use during actual patient care to hospitalised persons living with dementia. This study empirically identifies that communication is elicited in similar patterns by nursing staff in the simulated environment compared to the naturalistic care environment which demonstrates that simulation can be used as a valid tool for education and research on person-centred communication. REPORTING METHODS: STROBE. PATIENT OR PUBLIC CONTRIBUTION: No Patient or Public Contribution.


Assuntos
Comunicação , Demência , Humanos , Demência/enfermagem , Projetos Piloto , Feminino , Masculino , Idoso , Simulação de Paciente , Relações Enfermeiro-Paciente , Adulto , Recursos Humanos de Enfermagem Hospitalar/psicologia , Pessoa de Meia-Idade
13.
J Clin Nurs ; 33(7): 2719-2731, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38528439

RESUMO

AIM: To explore home-dwelling people with dementia and family members' perceptions of the feasibility and acceptability of an intervention using dementia-related literature excerpts to facilitate conversations on ethical issues related to living with dementia. BACKGROUND: Ethical issues in dementia care emerge throughout the illness. In the early stages, they may involve decisions about disclosing the illness to the family, shifting roles and responsibilities, and considerations of transitioning to a nursing home. Addressing ethical issues and providing adequate support to home-dwelling people with dementia and their families are often lacking. DESIGN: An exploratory-descriptive qualitative study. METHODS: We conducted eight interviews with 14 home-dwelling persons with dementia and their family caregivers. Six were dyadic interviews, and two were individual interviews with family caregivers. We analysed the interview data using template analysis. We adhered to the COREQ checklist in reporting this study. RESULTS: Using excerpts from dementia-related literature was a feasible and acceptable way of initiating discussions on ethical issues among home-dwelling persons with dementia and family caregivers. However, engaging the families of newly diagnosed individuals was challenging due to emotional distress. The intervention provided peer support, including identifying with others and sharing experiences. Moreover, participating couples found intimacy and relational attunement through shared reflections. CONCLUSION: Based on the findings, it appears that the participants in this study felt that using excerpts from dementia-related literature to deliberate on ethical issues was feasible and acceptable. Deliberating on ethical issues with peers and family caregivers offers valuable social support and opportunities for strengthening relationships. IMPLICATIONS FOR PATIENT CARE: This study makes an important contribution by providing valuable insights into how ethical issues related to living with dementia can be addressed using related literature and suggests how the intervention can be integrated into existing care initiatives for home-dwelling people with dementia and their families. REPORTING METHOD: We have adhered to relevant EQUATOR guidelines with the COREQ reporting method. PATIENT OR PUBLIC CONTRIBUTION: A healthcare professional working as a so-called dementia coordinator (a title used in the Danish context) was involved in the conduct of this study by being responsible for the recruitment of home-dwelling people with dementia and their family members. Moreover, she had joint responsibility for facilitating the intervention along with the first author.


Assuntos
Cuidadores , Demência , Família , Pesquisa Qualitativa , Humanos , Demência/enfermagem , Demência/psicologia , Feminino , Masculino , Idoso , Família/psicologia , Cuidadores/psicologia , Idoso de 80 Anos ou mais , Vida Independente , Pessoa de Meia-Idade , Comunicação
14.
J Clin Psychol ; 80(8): 1821-1837, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38639034

RESUMO

OBJECTIVES: To explore the profiles of psychological flexibility among dementia family caregivers and examine their associations with psychological well-being and caregiving factors. METHODS: Participants were 521 dementia family caregivers in Japan. Latent profile analysis was conducted to explore the profiles of psychological flexibility. The analyses examined differences in depression, anxiety, life satisfaction, and work-family conflict/enrichment between the profiles, and whether sociodemographic variables and caregiving stressors predict the profile. RESULTS: Four distinct profiles were identified: high psychological flexibility (14.2%), moderate psychological flexibility with high commitment (24.7%), moderate psychological flexibility with low commitment (48.0%), and low psychological flexibility (13.1%). The low psychological flexibility profile exhibited the highest scores of depression, anxiety and work-family conflict, followed by the moderate psychological flexibility with low/high commitment profiles, and the high psychological flexibility profile. The high psychological flexibility and moderate psychological flexibility with high commitment profiles exhibited higher life satisfaction than the moderate psychological flexibility with low commitment profile. Caregiving stressors, marital status, and caregiver status predicted the profile. CONCLUSION: Enhancing defusion and acceptance, rather than increasing commitment to personal values, may be beneficial in supporting distressed caregivers. Having more caregiving stressors, being single/divorced/bereaved, and being a primary caregiver may be useful indicators of decreased psychological flexibility among dementia family caregivers.


Assuntos
Cuidadores , Demência , Satisfação Pessoal , Humanos , Cuidadores/psicologia , Feminino , Masculino , Demência/psicologia , Demência/enfermagem , Pessoa de Meia-Idade , Idoso , Adulto , Japão , Depressão/psicologia , Adaptação Psicológica , Ansiedade/psicologia , Estresse Psicológico/psicologia , Análise de Classes Latentes , Idoso de 80 Anos ou mais , Família/psicologia
15.
Arch Psychiatr Nurs ; 50: 147-159, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38789227

RESUMO

PURPOSE: This study assesses the effectiveness of a health education program on caregiving outcomes for people with dementia and their families. METHODS: This quasi-experimental study involved 250 people with dementia and their family caregivers. Behavioral problems in people with dementia were assessed using the Chinese version of the Cohen-Mansfield Agitation Inventory-community form. Family caregiver outcomes were measured using the Agitation Management Self-Efficacy Scale, Caregiver Preparedness Scale, Competence Scale, and Community Resource Awareness and Utilization Assessment. RESULTS: Following the intervention, the experimental group demonstrated significant improvements in terms of self-efficacy, preparedness, competence, and awareness and utilization of community resources among family caregivers. Additionally, the experimental group exhibited lower levels of behavioral problems among people with dementia. CONCLUSIONS: This study helped improve caregiving outcomes for people with dementia and their family caregivers. Therefore, outpatient healthcare providers can utilize these findings to enhance care for this population.


Assuntos
Cuidadores , Demência , Educação em Saúde , Profissionais de Enfermagem , Autoeficácia , Humanos , Cuidadores/psicologia , Cuidadores/educação , Demência/enfermagem , Demência/psicologia , Masculino , Feminino , Educação em Saúde/métodos , Profissionais de Enfermagem/educação , Idoso , Pessoa de Meia-Idade
16.
Geriatr Nurs ; 57: 117-122, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38640645

RESUMO

Effective staff-patient communication is critical in acute care settings, particularly for patients with dementia. Limited work has examined the impact of quality of staff-patient care interactions on patient engagement. The purpose of this study was to determine whether the quality of staff-patient care interactions were associated with active patient engagement during the interaction after controlling for relevant covariates. The study was a secondary data analysis using baseline data from the Function Focused Care for Acute Care intervention study, with a total sample of 286 patients. Descriptive statistics and a generalized linear mixed model were used. The findings indicated that there was a significant relationship between the quality of care interactions and patient engagement such that receiving positive care interactions resulted in higher odds of active patient engagement. These findings can inform future interventions and training for acute care staff to improve quality of care interactions and patient engagement.


Assuntos
Demência , Participação do Paciente , Qualidade da Assistência à Saúde , Humanos , Demência/enfermagem , Masculino , Feminino , Idoso , Comunicação , Idoso de 80 Anos ou mais , Relações Profissional-Paciente
17.
Geriatr Nurs ; 57: 179-187, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38663186

RESUMO

Caregivers of people living with dementia face strain, reduced self-care, and poorer health status. However, research examining the links among those outcomes is limited. We explored the association between caregiver strain and the impact of caregiving on health status and identified the mediating role of self-care difficulty in this association. In the national caregiving dataset "Caregiving in the U.S. 2020," we included 312 caregivers in this study. Demographics, caregiving characteristics, a composite scale for caregiver strain, and single-item questions for the impact of caregiving on health status and self-care difficulty were used. Descriptive statistics and mediation analysis were conducted. Results revealed that higher caregiver strain was associated with higher self-care difficulty (OR 2.054, p < .001) and negative health changes due to caregiving (OR 2.719, p < .001). Self-care difficulty partially mediated this association. These results indicated the need to explore interventions or resources to offer caregivers to encourage their self-care awareness and activities.


Assuntos
Cuidadores , Demência , Autocuidado , Humanos , Masculino , Feminino , Estudos Transversais , Cuidadores/psicologia , Idoso , Demência/enfermagem , Inquéritos e Questionários , Pessoa de Meia-Idade , Nível de Saúde , Estresse Psicológico/psicologia , Estados Unidos
18.
Psychogeriatrics ; 24(4): 897-908, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38837527

RESUMO

BACKGROUND: Without appropriate support, taking care of people living with dementia may become a burden for family caregivers. Identifying the needs for caregivers can help them minimise the burden of caring and meet quality care for people living with dementia. METHODS: In the first phase, a content validity test was conducted on the Carers' Needs Assessment of Dementia (CNA-D) in the Indonesian version. The second phase, a sequential explanatory mixed-methods design, was conducted on 65 family caregivers in two stages. The first stage was a cross-sectional study. A correlation test between caregiver problems and caregiver burden was conducted. The caregiver problems that were statistically significant were analyzed to reveal the unmet needs. A needs analysis was also conducted on problems experienced by more than half of the caregivers. In the second stage, we conducted a semi-structured individual interview, and thematic analysis was used to analyze the data. RESULTS: The result of the validity test of the CNA-D instrument, Indonesian version, obtained a high value for content validity. The main problem of caregivers is a lack of information about dementia; however, it does not have a significant correlation with caregiver burden. The caregiver problem with the highest correlation to caregiver burden is burnout due to caring. More than 50% of caregivers' needs in Sleman Regency were not met in this research. The most essential needs that were not met were counselling and psychotherapy (83.3%-92%). The personal understanding of dementia, spiritual values in caring, cultural values in caring, barriers to accessing healthcare services, and self-care strategies should be considered in fulfilling family caregiver needs. CONCLUSION: Most of the needs of family caregivers of people living with dementia in Sleman Regency, Yogyakarta, have not been met. Therefore, it requires collaboration with multi-professionals and all stakeholders to fulfil these needs.


Assuntos
Cuidadores , Demência , Avaliação das Necessidades , Humanos , Cuidadores/psicologia , Demência/enfermagem , Demência/psicologia , Feminino , Masculino , Estudos Transversais , Pessoa de Meia-Idade , Indonésia , Idoso , Adulto , Inquéritos e Questionários , Sobrecarga do Cuidador/psicologia , Família/psicologia , Idoso de 80 Anos ou mais , Efeitos Psicossociais da Doença , Reprodutibilidade dos Testes , Apoio Social
19.
Br J Community Nurs ; 29(7): 321-325, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38963276

RESUMO

Many people living with dementia will also have multimorbidity comprising several other intercurrent, long-term and comorbid conditions. This article examines the relationship between such conditions in the context of dementia, giving an overview of the literature, including prevalence and some of the common conditions that can coexist with dementia. The theory and evidence-base will be tied together using a case study approach, to illustrate the complexity of managing comorbid conditions and multimorbidity alongside dementia, and explore some of the approaches that can be used by community nurses to support the overall health of people living with dementia that they work with.


Assuntos
Comorbidade , Demência , Multimorbidade , Humanos , Demência/epidemiologia , Demência/enfermagem , Idoso , Enfermagem em Saúde Comunitária , Prevalência , Feminino
20.
Br J Community Nurs ; 29(6): 271-274, 2024 Jun 02.
Artigo em Inglês | MEDLINE | ID: mdl-38814836

RESUMO

People with dementia and their family carers may be subject to a number of different risks; these risks may overlap with, and impact on one another. Due to changes in capacity that come with dementia, people with the diagnosis may be overly cautious about decisions made relating to risk made on their behalf, and this may have a negative impact on their wellbeing and quality of life. This article aims to educate community nurses on the risks they need to be aware of when working with families affected by dementia, and presents a risk enablement framework as a way of assessing and managing risk in a person-centred way.


Assuntos
Cuidadores , Demência , Humanos , Demência/enfermagem , Cuidadores/psicologia , Enfermagem em Saúde Comunitária , Qualidade de Vida , Medição de Risco
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