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OBJECTIVE: We examined the user experience in different modalities (face-to-face, semi-automated phone-based, and fully automated phone-based) of cognitive testing in people with subjective cognitive decline and mild cognitive impairment. METHOD: A total of 67 participants from the memory clinic of the Maastricht University Medical Center+ participated in the study. The study consisted of cognitive tests in different modalities, namely, face-to-face, semi-automated phone-based guided by a researcher, and fully automated phone-based without the involvement of a researcher. After each assessment, a user experience questionnaire was administered, including questions about, for example, satisfaction, simplicity, and missing personal contact, on a seven-point Likert scale. Non-parametric tests were used to compare user experiences across different modalities. RESULTS: In all modalities, user experiences were rated above average. The face-to-face ratings were comparable to the ratings of the semi-automated phone-based assessment, except for the satisfaction and recommendation items, which were rated higher for the face-to-face assessment. The face-to-face assessment was preferred above the fully automated phone-based assessment on all items. In general, the semi- and fully automated phone-based assessments were comparable (simplicity, conceivability, quality of sound, visiting the hospital, and missing personal contact), while on all the other items, the semi-automated phone-based assessment was preferred. CONCLUSIONS: User experience was rated high within all modalities. Simplicity, conceivability, comfortability, and participation scores were comparable in the semi-automated phone-based and face-to-face assessment. Based on these findings and earlier research on validation of the semi-automated phone-based assessment, the semi-automated assessment could be useful for screening for clinical trials, and after more research, in clinical practice.
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AIM: To investigate the experiences of people with Parkinson's disease in coping with and adapting to their disease and to identify considerations for a tailored self-management support program. DESIGN: A descriptive phenomenological focus group study. METHODS: Five semi-structured focus groups were conducted between April 2023 and June 2023 in the Netherlands, with 12 people with Parkinson's disease. Two researchers independently performed an inductive content analysis. RESULTS: Three principal categories emerged: (1) Rational realisation versus emotional experience: the coping strategy transition. This category includes three main coping strategies: denial or avoidance coping, acknowledging with less active coping and proactive and task-oriented coping. (2) Factors that influence coping, including mindset and skills, social circles and communication and access to support and care. (3) Considerations for successful self-management of Parkinson's disease, highlighting key areas such as psycho-emotional guidance, nutrition and lifestyle, peer support and maintaining autonomy and sense of identity. CONCLUSION: Coping and adaptation strategies are individual and dynamic processes, with multiple key or turning points during the transition between strategies. Tailored self-management support can enhance coping abilities during these transitions, fostering adaptation to a life with Parkinson's disease. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: A patient-focused version of an existing blended self-management support program for family caregivers will be developed, which will be delivered by healthcare professionals. IMPACT: This study can help healthcare professionals tailor support for people with Parkinson's disease, emphasising their role in facilitating coping and adaptation. Enhancing self-management can improve self-efficacy, quality of life and potentially reduce healthcare utilisation in people with Parkinson's disease. REPORTING METHOD: Findings are reported according to the COREQ guidelines. PATIENT OR PUBLIC CONTRIBUTION: Patients and Parkinson's disease experts participated in the preparation and implications of the findings. All participants could contribute to the self-management support program, either through video interviews or content feedback.
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OBJECTIVES: Loneliness and social isolation are associated with adverse health outcomes, especially within the older adult population, underlining the need for effective interventions. This systematic review and meta-analysis aims to summarize all available evidence regarding the effectiveness of interventions for loneliness and social isolation, to map out their working mechanisms, and to give implications for policy and practice. DESIGN: Systematic literature review and meta-analysis. SETTING AND PARTICIPANTS: Older adults (≥65 years). METHODS: A systematic search was conducted in MEDLINE, PsycINFO, and CINAHL for studies quantitively or qualitatively assessing effects of interventions for loneliness and social isolation in older adults, following predefined selection criteria. Risk of bias as well as small study effects were assessed and, wherever appropriate, information about effect sizes of individual studies pooled using random-effects meta-analyses. Sources for between-study heterogeneity were explored using meta-regression. RESULTS: Of n = 2223 identified articles, n = 67 were eventually included for narrative synthesis. Significant intervention effects were reported for a proportion of studies (55.9% and 50.0% for loneliness and social isolation, respectively) and 57.6% of studies including a follow-up measure (n = 29) reported sustained intervention effects. Meta-analysis of n = 27 studies, representing n = 1756 participants, suggested a medium overall effect of loneliness interventions (d = -0.47; 95% CI, -0.62 to -0.32). Between-study heterogeneity was substantial and could not be explained by differences in study design, year of publication, outcome measures, intervention length, participant demographics, setting, baseline level of loneliness, or geographic location. However, non-technology-based interventions reported larger effect sizes on average (Δd = -0.35; 95% CI, -0.66 to -0.04; P = .029) and were more often significant. Qualitative assessment of potential intervention mechanisms resulted in 3 clusters of effective components: "promoting social contact," "transferring knowledge and skills," and "addressing social cognition". CONCLUSIONS AND IMPLICATIONS: Interventions for loneliness and social isolation can generally be effective, although some unexplained between-study heterogeneity remains. Further research is needed regarding the applicability of interventions across different settings and countries, also considering their cost-effectiveness.
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Solidão , Isolamento Social , Humanos , Solidão/psicologia , Isolamento Social/psicologia , Idoso , Masculino , Feminino , Idoso de 80 Anos ou maisRESUMO
OBJECTIVE: Online interventions hold promise in supporting the well-being of family caregivers and enhancing the quality of care they provide for individuals with long-term or chronic conditions. However, dropout rates from support programs among specific groups of caregivers, such as caregivers of people with dementia, pose a challenge. Focused reviews are needed to provide more accurate insights and estimates in this specific research area. METHODS: A meta-analysis of dropout rates from available online interventions for family caregivers of people with dementia was conducted to assess treatment acceptability. A systematic search yielded 18 studies involving 1,215 caregivers. RESULTS: The overall pooled dropout rate was 18.4%, with notable heterogeneity indicating varied intervention adherence. Interventions incorporating human contact, interactive features, and personalization strategies for specific types and stages of dementia predicted significantly lower dropout rates. Methodological assessment revealed variability in study quality. CONCLUSION: Findings support the effectiveness of social support, personalization strategies, and co-design in enhancing intervention adherence among dementia family caregivers. Further research is needed to explore factors influencing dropout rates and conduct robust trials to refine the implementation of future interventions.
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Cuidadores , Demência , Apoio Social , Humanos , Cuidadores/psicologia , Demência/enfermagem , Demência/terapia , Intervenção Baseada em Internet , Pacientes Desistentes do TratamentoRESUMO
BACKGROUND: Recognised as essential for high-quality dementia service, person-centred care aims to understand and respect the unique needs of each individual. Self-experience practices may offer caregivers an opportunity to acquire knowledge, empathy, and skills related to person-centred care, especially through recreating experiences similar to dementia. Given the need to enhance the understanding of self-experience practices in dementia care, a more comprehensive investigation of these training interventions for (future) caregivers is needed. METHODS: We conducted a scoping review to map the evidence on the use of self-experience practices in dementia training. We systematically searched Cochrane Library, MEDLINE via PubMed, CINAHL, and Web of Science. We also searched for grey literature, as well as registry entries, and conducted backward citation tracking of included reviews. We analysed data on intervention characteristics, factors influencing the implementation, and learning outcomes based on Kirkpatrick's model. RESULTS: We included 44 reports across 30 intervention programmes. The majority of reports (91%) were published from 2016 onwards, with 32% originating from the USA and 25% from the UK. We identified passive, interactive, immersive, and multicomponent self-experience interventions in dementia education and training. Learning outcomes based on Kirkpatrick's model were fairly distributed across all identified modalities. Both consumers and providers emphasised aspects related to the development and implementation of practices, particularly organisational-related considerations such as temporal and spatial planning of trainings. CONCLUSIONS: Our review highlights diverse interventions incorporating self-experience practices, with an increasing role for technological tools. While self-experience interventions engage participants, the impact on individuals with dementia and organisational levels remain largely unreported. Our overview, informed by current literature, underscores unique considerations and challenges associated with dementia-related self-experience practices. Implementing and evaluating complex training interventions using self-experience practices should consider ethical aspects. TRIAL REGISTRATION: Registry: Registered within the Open Science Framework (available at https://osf.io/fycxa/).
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Cuidadores , Demência , Humanos , Demência/terapia , Cuidadores/psicologia , Assistência Centrada no PacienteRESUMO
OBJECTIVES: Young-onset dementia (YOD) symptoms often first present in the workplace, resulting in work performance challenges and eventually loss of employment. This study aims to investigate the experiences, work values, and support needs of employees with YOD and their relatives. METHOD: Semi-structured interviews were conducted to explore the experiences, work values, and support needs of (former) employees with YOD and their relatives. Subsequently, separate focus group discussions were conducted for employees and relatives to review and prioritize interview findings. Inductive thematic analysis was applied to both datasets. RESULTS: A total of 15 interviews (six employees; nine relatives) and four focus group discussions (ten employees; six relatives) were conducted. Six themes emerged, with five revolving around the central theme: desire to work. The other themes represent essential contributing factors, including importance of receiving a YOD diagnosis; knowledge, awareness, and understanding regarding YOD; open communication, joint decision making, and collaboration; work adjustments, involvement, and support; phasing out work and future perspectives. CONCLUSION: The findings highlight a strong desire to work post-YOD diagnosis, serving as a foundation for developing workplace support tools and guidance. This has the potential to help individuals with YOD preserve their self-confidence and identity while working within their capabilities.
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Demência , Família , Pesquisa Qualitativa , Humanos , Demência/psicologia , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Família/psicologia , Idade de Início , Grupos Focais , Emprego/psicologia , Apoio Social , Local de Trabalho/psicologia , Entrevistas como AssuntoRESUMO
OBJECTIVES: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. METHOD: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. RESULTS: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. CONCLUSION: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.
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BACKGROUND: Acceptance and commitment therapy (ACT), as an empirically based third-wave cognitive behavioral therapy, has shown promise in enhancing well-being and functioning across diverse populations. However, in the context of caregiving, the effect size of available ACT interventions remains at best moderate, sometimes accompanied by high dropout rates, highlighting the need for more effective and feasible intervention designs. OBJECTIVE: The objective of our study was to evaluate the feasibility and acceptability of a fully online ACT program designed for family caregivers of people with dementia. This study aimed to boost psychological flexibility and support caregivers, enabling them to realize and prioritize their own life values alongside their caregiving responsibilities. METHODS: A mixed methods feasibility study using an uncontrolled pretest-posttest design was conducted. This intervention included a 9-week web-based self-help program based on ACT incorporating collaborative goal setting and weekly web-based motivational coaching for family caregivers of people with dementia. This study involved 30 informal caregivers recruited through memory clinics and social media platforms in the Netherlands and received approval from the Medical Ethics Committee of the Maastricht University Medical Center+ (NL77389.068.21/metc21-029). RESULTS: A total of 24 caregivers completed the postintervention assessment, indicating a high adherence rate (24/29, 83%). Caregivers reported positive feedback regarding collaborative goal setting, but some found challenges in implementing new skills due to their own habitual responses or the unpredictable context of dementia caregiving. Personalizing the intervention based on individual value preferences was highlighted as beneficial. CONCLUSIONS: Compared to other web-based self-help ACT interventions for family caregivers, this intervention showed a high adherence and sufficient level of feasibility, which underscores the use of personalization in delivering web-based interventions. Moreover, the potential of this ACT-based intervention for family caregivers of people with dementia was demonstrated, suggesting that further research and a larger-scale controlled trial are warranted to validate its effectiveness. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2022-070499.
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Terapia de Aceitação e Compromisso , Demência , Intervenção Baseada em Internet , Humanos , Cuidadores/psicologia , Estudos de Viabilidade , Demência/terapiaRESUMO
INTRODUCTION: The intermediate stages of dementia are relatively under-researched, including in Portugal. The Actifcare (ACcess to TImely Formal Care) EU-JPND project studied people with mild-moderate dementia, namely their needs, access to and use of community services (e.g., day centers, home support). In our baseline assessment of the Portuguese Actifcare cohort, the unmet needs of some participants would call for formal support, which was not always accessible or used. We now report the main results of the 12-month follow-up, analyzing changes in needs, service (non)use, quality of life and related variables. METHODS: This was a longitudinal, observational study using a convenience sample of 54 dyads of people with dementia and their family carers. Our main outcomes were the Camberwell Assessment of Need for the Elderly (CANE) and the Resources Utilization in Dementia. Clinical-functional, quality of life, psychological distress and caregiving-related assessments were also used. RESULTS: At follow-up, the cognitive and functional status of people with dementia declined (p < 0.001), and their neuropsychiatric symptoms increased (p = 0.033). Considering CANE interviewers' ratings, the total needs of people with dementia increased at follow-up (p < 0.001) but not the unmet needs. Quality of life was overall stable. The use of formal care did not increase significantly, but informal care did in some domains. Carers' depressive symptoms increased (p = 0.030) and perseverance time decreased (p = 0.045). However, carers' psychological distress unmet needs were lower (p = 0.007), and their stress and quality of life remained stable. CONCLUSION: People with dementia displayed complex biopsychosocial unmet needs. Their cognitive-functional decline over one year was not accompanied by a corresponding increase in any pattern of unmet need, nor of service use. Reliance on informal care (namely supervision) may have contributed to this. Caregiving-related outcomes evolved according to different trends, although stability was almost the rule. Primary carers were even more present at follow-up, without an apparently heavier toll on their own needs, burden, and quality of life. Overall, this longitudinal study comprehensively assessed Portuguese community-dwelling people with dementia. Despite the lack of generalizability, participants' needs remained overall stable and partly unmet over one year. Longer follow-up periods are needed to understand such complex processes.
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Cuidadores , Demência , Qualidade de Vida , Humanos , Demência/terapia , Feminino , Masculino , Portugal , Idoso , Estudos Longitudinais , Cuidadores/psicologia , Seguimentos , Idoso de 80 Anos ou mais , Fatores de Tempo , Necessidades e Demandas de Serviços de Saúde , Pessoa de Meia-Idade , Avaliação das NecessidadesRESUMO
OBJECTIVE: This study aimed to create a tool to assess eHealth interventions for dementia by adapting an existing implementation readiness (ImpRess) checklist that assessed manualised interventions. METHODS: In Part 1, online semi-structured interviews with individual stakeholders (N = 9) with expertise in eHealth and dementia were conducted (response rate 83%). The Nonadoption, Abandonment, and challenges to the Scale-Up, Spread, and Sustainability of Health and care technologies (NASSS) framework was applied, both to guide the construction of the interview guide, as well as to use its subdomains as codes in the deductive qualitative thematic analysis. Respondents were industry professionals (n = 3), researchers (n = 3), policy officers (n = 2), and a clinician (n = 1). In Part 2, the items of the original ImpRess checklist were supplemented by items that covered determinants discussed in the interviews, that were not included in the original checklist. RESULTS: The main findings from the interviews included: Participants' preference for a non-dementia-specific, more general approach to the checklist; the importance of searching for shared values with implementers; and the need for more systematic monitoring of implementation. CONCLUSIONS: The EmpRess checklist applies an inclusive design approach. The checklist will help evaluate the implementation determinants of eHealth interventions for dementia and provide up-to-date information on what is, and is not, working in eHealth for dementia care.
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Lista de Checagem , Demência , Pesquisa Qualitativa , Telemedicina , Humanos , Demência/terapia , Telemedicina/métodos , Telemedicina/normas , Participação dos Interessados , Entrevistas como Assunto , Feminino , MasculinoRESUMO
BACKGROUND: The evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with young-onset dementia (YOD). OBJECTIVE: To describe palliative care practices including advance care planning (ACP) in people with YOD residing in Dutch nursing homes. METHODS: The study presents baseline questionnaire data from an observational cohort study. Physicians, family caregivers, and nursing staff completed questionnaires about 185 residents with YOD. The questionnaires included items on sociodemographics, quality of life measured with the quality of life in late-stage dementia (QUALID) scale, dementia-related somatic health problems, symptoms, pain medication, psychotropic drugs, and ACP. RESULTS: The mean age was 63.9 (SD 5.8) years. Half (50.3%) of them were female. Alzheimer's disease dementia (42.2%) was the most prevalent subtype. The mean QUALID score was 24.0 (SD 7.9) as assessed by family caregivers, and 25.3 (SD 8.6) as assessed by the nursing staff. Swallowing problems were the most prevalent dementia-related health problem (11.4%). Agitation was often reported by physicians (42.0%) and nursing staff (40.5%). Psychotropics were prescribed frequently (72.3%). A minority had written advance directives (5.4%) or documentation on treatment preferences by the former general practitioner (27.2%). Global care goals most often focused on comfort (73.9%). Proportions of do-not-treat orders were higher than do-treat orders for all interventions except for hospitalization and antibiotics. CONCLUSIONS: ACP must be initiated earlier, before nursing home admission. A palliative approach seems appropriate even though residents are relatively young and experience few dementia-related health problems.
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Doença de Alzheimer , Demência , Humanos , Feminino , Idoso , Masculino , Cuidados Paliativos , Cuidadores , Qualidade de Vida , Demência/epidemiologia , Demência/terapia , Casas de SaúdeRESUMO
OBJECTIVES: This study aims to provide more insight into possible barriers and facilitators caregivers of people with Huntington's disease (HD) encounter, and what their needs and wishes are regarding a remote support program. METHODS: In total, 27 persons participated in four focus group interviews. Eligible participants were caregivers (n = 19) of a person with HD, and healthcare professionals (n = 8) involved in HD care. Qualitative data were analyzed by two researchers who independently performed an inductive content analysis. RESULTS: Four major themes emerged from the data, including (1) a paradox between taking care of yourself and caring for others; (2) challenges HD caregivers face in daily life, including lack of HD awareness, taboo and shame, feelings of loneliness, concerns about heredity and children, and coping with HD symptoms; (3) facilitators in the caregiving process, including a social network, professional support, openness, talking in early phases, and daily structure; (4) needs regarding a support program. CONCLUSION: These insights will be used to develop a remote support program for HD caregivers, using a blended and self-management approach. Newly developed and tailored support should be aimed at empowering caregivers in their role and help them cope with their situation, taking into account barriers and facilitators.
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Doença de Huntington , Humanos , Doença de Huntington/terapia , Grupos Focais , Cuidadores , Capacidades de Enfrentamento , Emoções , Pesquisa QualitativaRESUMO
OBJECTIVES: To evaluate the effectiveness of the SPAN-intervention, a psychosocial intervention aiming at improving a sense of usefulness and engaging in meaningful activities, for community-dwelling people living with young-onset dementia (YOD) and their family caregivers. METHODS: A cluster-randomized controlled trial with two parallel groups (SPAN-intervention vs. care as usual) with assessments at baseline and five-month follow-up was performed. Sixty-one persons living with YOD and their family caregivers were included (SPAN-intervention group: n = 35; care as usual group: n = 26). Outcomes included, for the person living with YOD, empowerment (operationalized by self-management abilities using the SMAS-30; primary outcome), quality of life, neuropsychiatric symptoms, disability, apathy; and, for the family caregiver, quality of life, emotional distress, sense of competence. Data were analyzed using linear mixed models. RESULTS: We found no statistically significant effects of the SPAN-intervention on empowerment, nor on the secondary outcome measures for persons living with YOD or their family caregivers. CONCLUSION: Although the SPAN-intervention may provide concrete opportunities to engage in activities and stimulate reciprocity, such as meaningful social activities, this study did not demonstrate intervention effects. Additional qualitative evaluations may provide more insight into the implementation process and experiences of people living with YOD and their family caregivers.This trial was registered at ClinicalTrials.gov (NCT02937883).
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Demência , Angústia Psicológica , Humanos , Qualidade de Vida , Cuidadores/psicologia , Emoções , Demência/psicologiaRESUMO
BACKGROUND: High cognitive activity possibly reduces the risk of cognitive decline and dementia. AIMS: To investigate associations between an individual's need to engage in cognitively stimulating activities (need for cognition, NFC) and structural brain damage and cognitive functioning in the Dutch general population with and without existing cognitive impairment. METHOD: Cross-sectional data were used from the population-based cohort of the Maastricht Study. NFC was measured using the Need For Cognition Scale. Cognitive functioning was tested in three domains: verbal memory, information processing speed, and executive functioning and attention. Values 1.5 s.d. below the mean were defined as cognitive impairment. Standardised volumes of white matter hyperintensities (WMH), cerebrospinal fluid (CSF) and presence of cerebral small vessel disease (CSVD) were derived from 3T magnetic resonance imaging. Multiple linear and binary logistic regression analyses were used adjusted for demographic, somatic and lifestyle factors. RESULTS: Participants (n = 4209; mean age 59.06 years, s.d. = 8.58; 50.1% women) with higher NFC scores had higher overall cognition scores (B = 0.21, 95% CI 0.17-0.26, P < 0.001) and lower odds for CSVD (OR = 0.74, 95% CI 0.60-0.91, P = 0.005) and cognitive impairment (OR = 0.60, 95% CI 0.48-0.76, P < 0.001) after adjustment for demographic, somatic and lifestyle factors. The association between NFC score and cognitive functioning was similar for individuals with and without prevalent cognitive impairment. We found no significant association between NFC and WMH or CSF volumes. CONCLUSIONS: A high need to engage in cognitively stimulating activities is associated with better cognitive functioning and less presence of CSVD and cognitive impairment. This suggests that, in middle-aged individuals, motivation to engage in cognitively stimulating activities may be an opportunity to improve brain health.
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Disfunção Cognitiva , Imageamento por Ressonância Magnética , Humanos , Feminino , Masculino , Estudos Transversais , Pessoa de Meia-Idade , Disfunção Cognitiva/epidemiologia , Idoso , Países Baixos/epidemiologia , Doenças de Pequenos Vasos Cerebrais , Cognição , Substância Branca/diagnóstico por imagem , Substância Branca/patologia , Testes NeuropsicológicosRESUMO
BACKGROUND: Previous research has shown that verbal memory accurately measures cognitive decline in the early phases of neurocognitive impairment. Automatic speech recognition from the verbal learning task (VLT) can potentially be used to differentiate between people with and without cognitive impairment. OBJECTIVE: Investigate whether automatic speech recognition (ASR) of the VLT is reliable and able to differentiate between subjective cognitive decline (SCD) and mild cognitive impairment (MCI). METHODS: The VLT was recorded and processed via a mobile application. Following, verbal memory features were automatically extracted. The diagnostic performance of the automatically derived features was investigated by training machine learning classifiers to distinguish between participants with SCD versus MCI/dementia. RESULTS: The ICC for inter-rater reliability between the clinical and automatically derived features was 0.87 for the total immediate recall and 0.94 for the delayed recall. The full model including the total immediate recall, delayed recall, recognition count, and the novel verbal memory features had an AUC of 0.79 for distinguishing between participants with SCD versus MCI/dementia. The ten best differentiating VLT features correlated low to moderate with other cognitive tests such as logical memory tasks, semantic verbal fluency, and executive functioning. CONCLUSIONS: The VLT with automatically derived verbal memory features showed in general high agreement with the clinical scoring and distinguished well between SCD and MCI/dementia participants. This might be of added value in screening for cognitive impairment.
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Doença de Alzheimer , Disfunção Cognitiva , Demência , Humanos , Reprodutibilidade dos Testes , Disfunção Cognitiva/diagnóstico , Disfunção Cognitiva/psicologia , Memória , Rememoração Mental , Testes Neuropsicológicos , Doença de Alzheimer/psicologia , Aprendizagem VerbalRESUMO
Objective: Close relationships influence health and quality of life outcomes for people with dementia and their families. Yet, we know little on the role of different relationship domains with quantitative methods having proved to have limitations in this research field. We aimed to study these relationship domains over time, contrasting the views of people with dementia and their family carers, making use of both quantitative and qualitative approaches.Methods: A convergent mixed methods design was adopted, analysing longitudinal data (four time points over three years) from 66 dyads of Portuguese community-dwelling people with dementia and their primary carers, from the EU-Actifcare project sample. Quantitative assessments used sociodemographic and clinical variables, and Positive Affect Index scores, with descriptive and inferential analyses. Qualitative data, collected through individual and joint semi-structured interviews, were explored using thematic analysis.Results: Both quantitative and qualitative findings demonstrated that some domains of relationship quality are affected in different ways, with changes occurring at different stages. Some (e.g., 'communication') may even improve after initial decline. 'Closeness' was consistently altered over time, from carers' perspectives, and played an important protective role regarding institutionalisation. Overall, changes in the relationship quality were perceived differently by people with dementia and their carers, and these divergent perspectives often led to tension. Qualitative data revealed that 'mixed feelings' (ambivalence) involve complex experiences, arguably more difficult to manage than negative feelings alone. Furthermore, perceived informal support, particularly from the extended family, and receiving formal services' assistance, seemed to facilitate positive (re)appraisals of the relationship.Conclusions: A deeper understanding of relationship quality and its domains as dementia progresses may help tailoring interventions to tackle modifiable aspects of relationships, meeting the needs and cherishing the resources of dyads and families. Timely assessments could identify relationships at risk and need for support, including for alternative caring arrangements.
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Demência , Qualidade de Vida , Humanos , Cuidadores , Relações FamiliaresRESUMO
Importance: There is limited information on modifiable risk factors for young-onset dementia (YOD). Objective: To examine factors that are associated with the incidence of YOD. Design, Setting, and Participants: This prospective cohort study used data from the UK Biobank, with baseline assessment between 2006 and 2010 and follow-up until March 31, 2021, for England and Scotland, and February 28, 2018, for Wales. Participants younger than 65 years and without a dementia diagnosis at baseline assessment were included in this study. Participants who were 65 years and older and those with dementia at baseline were excluded. Data were analyzed from May 2022 to April 2023. Exposures: A total of 39 potential risk factors were identified from systematic reviews of late-onset dementia and YOD risk factors and grouped into domains of sociodemographic factors (education, socioeconomic status, and sex), genetic factors (apolipoprotein E), lifestyle factors (physical activity, alcohol use, alcohol use disorder, smoking, diet, cognitive activity, social isolation, and marriage), environmental factors (nitrogen oxide, particulate matter, pesticide, and diesel), blood marker factors (vitamin D, C-reactive protein, estimated glomerular filtration rate function, and albumin), cardiometabolic factors (stroke, hypertension, diabetes, hypoglycemia, heart disease, atrial fibrillation, and aspirin use), psychiatric factors (depression, anxiety, benzodiazepine use, delirium, and sleep problems), and other factors (traumatic brain injury, rheumatoid arthritis, thyroid dysfunction, hearing impairment, and handgrip strength). Main Outcome and Measures: Multivariable Cox proportional hazards regression was used to study the association between the risk factors and incidence of YOD. Factors were tested stepwise first within domains and then across domains. Results: Of 356â¯052 included participants, 197â¯036 (55.3%) were women, and the mean (SD) age at baseline was 54.6 (7.0) years. During 2 891 409 person-years of follow-up, 485 incident YOD cases (251 of 485 men [51.8%]) were observed, yielding an incidence rate of 16.8 per 100â¯000 person-years (95% CI, 15.4-18.3). In the final model, 15 factors were significantly associated with a higher YOD risk, namely lower formal education, lower socioeconomic status, carrying 2 apolipoprotein ε4 allele, no alcohol use, alcohol use disorder, social isolation, vitamin D deficiency, high C-reactive protein levels, lower handgrip strength, hearing impairment, orthostatic hypotension, stroke, diabetes, heart disease, and depression. Conclusions and Relevance: In this study, several factors, mostly modifiable, were associated with a higher risk of YOD. These modifiable risk factors should be incorporated in future dementia prevention initiatives and raise new therapeutic possibilities for YOD.
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Alcoolismo , Demência , Diabetes Mellitus , Perda Auditiva , Cardiopatias , Acidente Vascular Cerebral , Masculino , Humanos , Feminino , Pessoa de Meia-Idade , Estudos Prospectivos , Alcoolismo/complicações , Biobanco do Reino Unido , Bancos de Espécimes Biológicos , Proteína C-Reativa , Força da Mão , Demência/diagnóstico , Fatores de Risco , Acidente Vascular Cerebral/epidemiologia , Cardiopatias/complicações , Apolipoproteínas , Perda Auditiva/complicaçõesRESUMO
Introduction: We studied the accuracy of the automatic speech recognition (ASR) software by comparing ASR scores with manual scores from a verbal learning test (VLT) and a semantic verbal fluency (SVF) task in a semiautomated phone assessment in a memory clinic population. Furthermore, we examined the differentiating value of these tests between participants with subjective cognitive decline (SCD) and mild cognitive impairment (MCI). We also investigated whether the automatically calculated speech and linguistic features had an additional value compared to the commonly used total scores in a semiautomated phone assessment. Methods: We included 94 participants from the memory clinic of the Maastricht University Medical Center+ (SCD N = 56 and MCI N = 38). The test leader guided the participant through a semiautomated phone assessment. The VLT and SVF were audio recorded and processed via a mobile application. The recall count and speech and linguistic features were automatically extracted. The diagnostic groups were classified by training machine learning classifiers to differentiate SCD and MCI participants. Results: The intraclass correlation for inter-rater reliability between the manual and the ASR total word count was 0.89 (95% CI 0.09-0.97) for the VLT immediate recall, 0.94 (95% CI 0.68-0.98) for the VLT delayed recall, and 0.93 (95% CI 0.56-0.97) for the SVF. The full model including the total word count and speech and linguistic features had an area under the curve of 0.81 and 0.77 for the VLT immediate and delayed recall, respectively, and 0.61 for the SVF. Conclusion: There was a high agreement between the ASR and manual scores, keeping the broad confidence intervals in mind. The phone-based VLT was able to differentiate between SCD and MCI and can have opportunities for clinical trial screening.
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Informal caregivers are the primary source of support for adults with chronic conditions and disabilities. Empirical research highlights chronic stress and other risks of adverse outcomes of caregiving. Acceptance and Commitment Therapy (ACT) is an emerging evidenced-based practice that shows promise in improving an array of outcomes, theoretically by increasing psychological flexibility as the primary process of change. Research has begun to evaluate ACT among informal caregivers of adult populations, and a systematic review is now needed to summarise this evidence base. Electronic searches from five databases, including PubMed, PsycInfo, Embase, CINAHL, and Cochrane Library, yielded an initial 7896 hits, which after screening for inclusion criteria, resulted in 21 clinical trials. Studies were coded to synthesise the feasibility, effectiveness, and quality of evidence. Findings show that ACT was reported to be largely feasible and acceptable. However, the efficacy of ACT was mixed, with a more consistent pattern for informal caregivers of people with dementia. Several methodological quality issues limited the findings. However, theoretical synthesis and preliminary evidence support the promising effect of ACT in subgroups of informal caregivers. Research on the process of change, as well as larger-scale, methodologically rigorous trials, are needed to consolidate these findings.
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INTRODUCTION: Numerous caregiver support programmes have shown promise in promoting the mental health of informal caregivers of people with dementia (PwD). However, there is still a lack of evidence-based interventions tailored to the specific needs of this population. This mixed-methods study aims to evaluate the feasibility, acceptability and preliminary efficacy of a blended intervention based on acceptance and commitment therapy (ACT) for informal caregivers of PwD, leading to a better understanding of intervention refinements for future controlled trials. METHODS AND ANALYSIS: This study includes an uncontrolled pre-post intervention pilot study. A total of 30 informal caregivers of PwD will be recruited through memory clinics and social media platforms in the Netherlands. The ACT for informal caregiver (ACT-IC) intervention will be delivered over a 9-week period and consists of a collaborative goal-setting session, nine online ACT modules, nine telephone-based motivational coaching sessions and 6 monthly booster sessions following the main intervention period. Feasibility and acceptability will be assessed using attrition rate, adherence to and engagement with the intervention, proportion of missing data and semistructured interviews. Preliminary efficacy will be assessed with retrospective measures of depression, anxiety, stress, sense of competence, burden and self-efficacy at baseline, postintervention, at 3-month and 6-month follow-ups. ETHICS AND DISSEMINATION: The Medical Ethical Committee from the Maastricht academic hospital and Maastricht University approved the study. The findings of this study will be shared with healthcare professionals, researchers and public audience through various channels, including scientific publications, conference presentations, online forums and community outreach programmes. TRIAL REGISTRATION NUMBER: NCT05064969.