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1.
Br J Psychiatry ; 224(6): 189-197, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38105553

RESUMO

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.


Assuntos
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 Neuropsicológicos
2.
Psychol Med ; : 1-11, 2024 Sep 04.
Artigo em Inglês | MEDLINE | ID: mdl-39228209

RESUMO

BACKGROUND: Different aspects of social relationships (e.g., social network size or loneliness) have been associated with dementia risk, while their overlap and potentially underlying pathways remain largely unexplored. This study therefore aimed to (1) discriminate between different facets of social relationships by means of factor analysis, (2) examine their associations with dementia risk, and (3) assess mediation by depressive symptoms. METHODS: Thirty-six items from questionnaires on social relationships administered in Wave 2 (2004/2005) of the English Longitudinal Study of Ageing (n = 7536) were used for exploratory and confirmatory factor analysis. Factors were then used as predictors in Cox proportional hazard models with dementia until Wave 9 as outcome, adjusted for demographics and cardiovascular risk factors. Structural equation modeling tested mediation by depressive symptoms through effect decomposition. RESULTS: Factor analyses identified six social factors. Across a median follow-up time of 11.8 years (IQR = 5.9-13.9 years), 501 people developed dementia. Higher factor scores for frequency and quality of contact with children (HR = 0.88; p = 0.021) and more frequent social activity engagement (HR = 0.84; p < 0.001) were associated with lower dementia risk. Likewise, higher factor scores for loneliness (HR = 1.13; p = 0.011) and negative experiences of social support (HR = 1.10; p = 0.047) were associated with higher dementia risk. Mediation analyses showed a significant partial effect mediation by depressive symptoms for all four factors. Additional analyses provided little evidence for reverse causation. CONCLUSIONS: Frequency and quality of social contacts, social activity engagement, and feelings of loneliness are associated with dementia risk and might be suitable targets for dementia prevention programs, partly by lowering depressive symptoms.

3.
Am J Geriatr Psychiatry ; 32(10): 1271-1291, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-38735829

RESUMO

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.


Assuntos
Cuidadores , Demência , Apoio Social , Humanos , Cuidadores/psicologia , Demência/enfermagem , Demência/terapia , Intervenção Baseada em Internet , Pacientes Desistentes do Tratamento
4.
Aging Ment Health ; 28(5): 791-800, 2024 05.
Artigo em Inglês | MEDLINE | ID: mdl-38468471

RESUMO

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.


Assuntos
Lista de Checagem , Demência , Pesquisa Qualitativa , Telemedicina , Humanos , Demência/terapia , Telemedicina/métodos , Telemedicina/normas , Participação dos Interessados , Entrevistas como Assunto , Feminino , Masculino
5.
Aging Ment Health ; 28(8): 1119-1128, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38669151

RESUMO

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.


Assuntos
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 Assunto
6.
Aging Ment Health ; 28(1): 178-187, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37409463

RESUMO

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.


Assuntos
Doença de Huntington , Humanos , Doença de Huntington/terapia , Grupos Focais , Cuidadores , Capacidades de Enfrentamento , Emoções , Pesquisa Qualitativa
7.
Aging Ment Health ; 28(2): 275-284, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-37776001

RESUMO

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).


Assuntos
Demência , Angústia Psicológica , Humanos , Qualidade de Vida , Cuidadores/psicologia , Emoções , Demência/psicologia
8.
Aging Ment Health ; 28(11): 1447-1456, 2024 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-38656033

RESUMO

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.


Assuntos
Cuidadores , Demência , Pesquisa Qualitativa , Apoio Social , Humanos , Demência/diagnóstico , Feminino , Masculino , Cuidadores/psicologia , Idoso , Austrália , Idoso de 80 Anos ou mais , Canadá , Pessoa de Meia-Idade , Países Baixos , Polônia , Grupos Focais
9.
J Adv Nurs ; 2024 Sep 03.
Artigo em Inglês | MEDLINE | ID: mdl-39225125

RESUMO

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.

10.
Int J Geriatr Psychiatry ; 38(5): e5916, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-37132330

RESUMO

OBJECTIVES: The study aims to describe people with dementia and informal caregivers' respective experiences of support after diagnosis and compares these experiences. Additionally, we determine how people with dementia and informal caregivers who are satisfied with support differ from those dissatisfied. METHODS: A cross-sectional survey study in Australia, Canada, the Netherlands, Poland, and United Kingdom was carried out to examine people with dementia and informal caregivers experience with support (satisfaction with information, access to care, health literacy, and confidence in ability to live well with dementia). The separate surveys contained closed questions. Analysis consisted of descriptive statistics and Chi-square tests. RESULTS: Ninety people with dementia and 300 informal caregivers participated, and 69% of people with dementia and 67% of informal caregivers said support after diagnosis helped them deal more efficiently with their concerns. Up to one-third of people with dementia and informal caregivers were dissatisfied with information about management, prognosis, and strategies for living positively. Few people with dementia (22%) and informal caregivers (35%) received a care plan. People with dementia were more often satisfied with information, had more often confidence in their ability to live well with dementia, and were less often satisfied with access to care compared to informal caregivers. Informal caregivers who were satisfied with support were more satisfied with information and access to care compared to informal caregivers not satisfied with support. CONCLUSIONS: Experience of dementia support can be improved and people with dementia and informal caregiver differ in their experiences of support.


Assuntos
Cuidadores , Demência , Humanos , Demência/diagnóstico , Estudos Transversais , Países Baixos , Reino Unido
11.
Aging Ment Health ; 27(10): 1983-1989, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37310855

RESUMO

OBJECTIVES: The aim of the current study was to investigate the health-related quality of life (HRQol) of the family caregiver in MCI, explore possible determinants and study possible differences with mild dementia. METHODS: This secondary data analysis included 145 persons with MCI and 154 persons with dementia and their family caregivers from two Dutch cohort studies. HRQoL was measured with the VAS of the EuroQol-5D-3L version. Regressions analyses were conducted to examine potential demographic and clinical determinants of the caregiver's HRQoL. RESULTS: The mean EQ5D-VAS in family caregivers of persons with MCI was 81.1 (SD 15.7), and did not significantly differ from family caregivers in mild dementia (81.9 (SD 13.0)). In MCI, patient measurements were not significantly associated with caregiver mean EQ5D-VAS. Concerning caregiver characteristics, being a spouse and a lower educational level were associated with a lower mean EQ5D-VAS (in a multiple linear regression model: unstandardized B -8.075, p = 0.013 and unstandardized B -6.162, p = 0.037 resp.). In mild dementia, the NPI item irritability showed an association with caregiver EQ5D-VAS in bivariate linear regression analyses. CONCLUSION: Results indicate that especially family caregiver characteristics seem to influence family caregiver HRQoL in MCI. Future research should include other potential determinants such as burden, coping strategies and relationship quality.


Assuntos
Cuidadores , Demência , Humanos , Qualidade de Vida , Modelos Lineares , Adaptação Psicológica
12.
Neuropsychol Rev ; 32(2): 294-315, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-33877569

RESUMO

Feedback of neuropsychological test results to patients and family members include psychoeducation and implications for daily life. This scoping review aimed to provide an overview of the literature on neuropsychological feedback and to offer clinical recommendations. In accordance with formal scoping review methodology, PubMed, PsycInfo, Web of Science, CINAHL, and Embase databases were searched. Studies were included if they reported on neuropsychological feedback, if full papers were available, and if they included human participants. All languages were included, and no limit was placed on the year of publication. Of the 2,173 records screened, 34 publications met the inclusion criteria. Five additional publications were included after cross-referencing. An update of the search led to the inclusion of two additional papers. Of these 41 publications, 26 were research papers. Neuropsychological feedback is provided for a wide spectrum of diagnoses and usually given in-person and has been related to optimal a positive effect on patient outcomes (e.g. increase the quality of life). Most papers reported on satisfaction and found that satisfaction with an NPA increased when useful feedback was provided. However, information retention was found to be low, but communication aids, such as written information, were found to be helpful in improving retention. The current review demonstrated the benefits of neuropsychological feedback and that this should be part of standard clinical procedures when conducting a neuropsychological assessment. Further research on the benefits of neuropsychological feedback and how to improve information provision would enrich the neuropsychological literature.


Assuntos
Família , Qualidade de Vida , Humanos , Testes Neuropsicológicos , Qualidade de Vida/psicologia
13.
Int J Geriatr Psychiatry ; 37(3)2022 Feb 08.
Artigo em Inglês | MEDLINE | ID: mdl-35156239

RESUMO

OBJECTIVES: Dementia at a young age differs from late onset dementia in pathology and care needs. This requires further research to improve the understanding of this group, support and service provision. Aim of current study is to reach consensus on the terminology and operational definition (i.e., age-related criteria and possible causes) of dementia at a young age, to aid further research. METHODS: A classical Delphi technique was used to transform opinions into group consensus by using an online survey. In three rounds statements regarding (1) terminology, (2) age-related criteria, and (3) aetiologies that can be considered as causes of dementia at a young age were sent to international experts in the field to give their opinions and additional comments on the statements. RESULTS: Forty-four experts responded and full consensus was reached on 22 out of 35 statements. Young-onset dementia emerged as the term of preference. Provisional consensus was found for the use of age 65 at symptom onset as preferred cut-off age. Consensus was reached on the inclusion of 15 out of 22 aetiologies and categories of aetiologies as potential cause for dementia at a young age. CONCLUSIONS: A clear term and operational definition have been reached. Although beneficial for conducting future research to gain more insight in pathology and care needs of young people living with dementia, still consensus about some details is lacking. To reach consensus about these details and implications for use in research and clinical practice, the organisation of an in person consensus meeting is advised.

14.
Aging Ment Health ; 26(2): 277-285, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-33325262

RESUMO

BACKGROUND: Frontotemporal dementia (FTD) has a profound impact on the spouse and other family caregivers involved. While caregivers have a need for support, it is difficult for healthcare providers to respond to their specific needs. This qualitative study explores the lived experiences and needs of caregivers of persons with FTD to facilitate the development of support. METHODS: Three focus group discussions were organized to explore the lived experiences of Dutch FTD caregivers. The included caregivers (n = 24) were aged 16 years or older and were involved in the care of a relative with FTD. Two researchers independently performed an inductive content analysis using open and axial coding. RESULTS: The main category emerging from the data was a lack of recognition, acknowledgment, and understanding experienced by caregivers. This was linked to caregivers' experiences with (1) complex emotional and behavioral symptoms in the person with FTD, (2) the trivializing responses of family and friends, (3) a perceived lack of knowledge and support from healthcare professionals, and (4) the bureaucratic procedures that accompany caregiving. As a result, caregivers felt lonely and solely responsible for the caregiving role. CONCLUSION: Caregivers of persons with FTD experience a lack of understanding in caring for their relative with FTD, which contributes to feelings of loneliness. A specialized support approach is needed to address the specific needs of caregivers of persons with FTD. Support should address strategies that caregivers can use to inform and involve family and friends in the caregiving situation to prevent loneliness in FTD caregivers.


Assuntos
Cuidadores , Demência Frontotemporal , Família , Grupos Focais , Humanos , Pesquisa Qualitativa , Cônjuges
15.
Aging Ment Health ; 26(2): 294-304, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-33291998

RESUMO

Objectives: A psychosocial intervention for spousal carers of people with dementia promoted emotional well-being through self-monitoring and personalized feedback, as demonstrated in a previous randomized controlled trial. The mechanism behind the intervention effects is thought to lie in increased awareness of, and thus, engagement in behaviours that elicit positive emotions (PA). This secondary analysis tests the assumption by investigating momentary data on activities, affect, and stress and explores the relevance of personalized feedback compared to self-monitoring only.Methods: The intervention was based on the experience sampling method (ESM), meaning that carers self-monitored own affect and behaviours 10 times/day over 6 weeks. The experimental group received personalized feedback on behaviours that elicit PA, while the pseudo-experimental group performed self-monitoring only. A control group was also included. ESM-data of 72 carers was analysed using multilevel mixed-effects models.Results: The experimental group reported significant increases in passive relaxation activities over the 6 weeks (B = 0.28, SE = 0.12, Z = 2.43, p < .05). Passive relaxation in this group was negatively associated with negative affect (r = -0.50, p = .01) and positively associated with activity-related stress (r = 0.52, p = .007) from baseline to post-intervention. Other activities in this or the other groups did not change significantly.Conclusion: Carer's daily behaviours were only affected when self-monitoring was combined with personalized feedback. Changing one's daily behaviour while caring for a person with dementia is challenging and aligned with mixed emotions. Acknowledging simultaneously positive and negative emotions, and feelings of stress is suggested to embrace the complexity of carer's life and provide sustainable support.


Assuntos
Cuidadores , Demência , Afeto , Avaliação Momentânea Ecológica , Humanos , Projetos de Pesquisa
16.
Aging Ment Health ; 26(11): 2307-2315, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-34486887

RESUMO

OBJECTIVES: Relationship quality (RQ) between a person with dementia and a family carer may influence their health and quality of life. However, evidence regarding its course and influencing factors is limited. We aimed to explore RQ trajectories in dementia, and identify predictors of change. METHODS: We analysed longitudinal data from a cohort of 350 community-dwelling people with dementia and their informal carers, participating in the Actifcare study in eight European countries. The Positive Affect Index, rated separately by both people with dementia and their carers, assessed RQ. Other measures included the Neuropsychiatric Inventory Questionnaire (regarding persons with dementia), and the Relative Stress Scale, Sense of Coherence Scale and Lubben Social Network Scale (for carers). Trajectories and influencing factors were explored applying a latent growth model (LGM). RESULTS: RQ in the group of carers declined over 1 year, but RQ scores for the persons with dementia did not change. Higher stress in carers negatively influenced their baseline RQ ratings. Carer sense of coherence and being a spouse were associated with more positive baseline RQ carer assessments. Higher levels of neuropsychiatric symptoms were linked to decline in carers' RQ, whereas social support was associated with more positive RQ trajectories. CONCLUSION: This study provides a valuable insight into the course of RQ. LGM proved useful to explore the factors that influence RQ trajectories and variability within- and between-persons. Our findings emphasise the importance of carer-perceived social support and sense of coherence, and of reducing neuropsychiatric symptoms, in maintaining a good RQ.


Assuntos
Demência , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Demência/epidemiologia , Demência/psicologia , Estudos Longitudinais , Cuidadores/psicologia , Cônjuges/psicologia
17.
Aging Ment Health ; 26(4): 725-734, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33860718

RESUMO

OBJECTIVES: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. METHODS: We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates. RESULTS: Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p < 0.001), 0.76 (p < 0.001) and 0.78 (p = 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.39 points, p = 0.007) and at six months follow-up (mean 0.31 points, p = 0.006). Unmet needs for company were associated with more affective symptoms at baseline, six and twelve months, mean 0.44 (p = 0.033), 0.67 (p < 0.001) and 0.91 (p < 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.40 points, p = 0.005) and at six months (mean 0.35 points, p = 0.002) follow-up. CONCLUSION: Interventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.


Assuntos
Demência , Transtornos Psicóticos , Idoso , Demência/psicologia , Necessidades e Demandas de Serviços de Saúde , Humanos , Estudos Longitudinais , Inquéritos e Questionários
18.
Alzheimers Dement ; 2022 Jun 17.
Artigo em Inglês | MEDLINE | ID: mdl-35715891

RESUMO

INTRODUCTION: Reliable data on the incidence rates for young-onset dementia (YOD) are lacking, but are necessary for research on disease etiology and to raise awareness among health care professionals. METHODS: We performed a systematic review and meta-analysis on population-based studies on the incidence of YOD, published between January 1, 1990 and February 1, 2022, according to Meta-analyses of Observational Studies in Epidemiology (MOOSE) guidelines. Data were analyzed using random-effects meta-analyses. Results were age-standardized, and heterogeneity was assessed by subgroup analyses and meta-regression. RESULTS: Sixty-one articles were included. Global age-standardized incidence rates increased from 0.17/100,000 in age 30 to 34 years, to 5.14/100,000 in age 60 to 64 years, giving a global total age-standardized incidence rate of 11 per 100,000 in age 30 to 64. This corresponds to 370,000 new YOD cases annually worldwide. Heterogeneity was high and meta-regression showed geographic location significantly influenced this heterogeneity. DISCUSSION: This meta-analysis shows the current best estimate of YOD incidence. New prospective cohort studies are needed.

19.
Mov Disord ; 36(11): 2539-2548, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-33617699

RESUMO

BACKGROUND: Anxiety disorders are among the most prevalent and disabling neuropsychiatric syndromes in patients with Parkinson's disease (PD), but no randomized controlled treatment trials of anxiety have been published to date. OBJECTIVE: The aim of this study was to assess the effectiveness of cognitive behavioral therapy (CBT) in the treatment of anxiety in patients with PD. METHODS: Forty-eight patients with PD with anxiety were randomized 1:1 between CBT and clinical monitoring only (CMO). The CBT program was developed to specifically address anxiety symptoms in PD and consisted of 10 weekly sessions. Assessments were conducted by blinded assessors at baseline, at the end of the intervention, after 3 months, and after 6 months (CBT group only). Main outcome measures were the Hamilton Anxiety Rating Scale (HARS) and the Parkinson Anxiety Scale (PAS). RESULTS: Both the CBT and CMO groups showed clinically relevant improvement. Although there was no between-group difference in outcome on the Hamilton Anxiety Rating Scale (6.7-point reduction in the CBT group versus 3.9-point reduction in the CMO group; P = 0.15), there was both a statistically significant and a clinically relevant between-group difference on the total PAS in favor of CBT (9.9-point reduction in the CBT group versus 5.2-point reduction in the CMO group; P = 0.012), which was due to improvement on the PAS subscales for episodic (situational) anxiety and avoidance behavior. This greater improvement was maintained at 3- and 6-month follow-ups. CONCLUSION: CBT is an effective treatment for anxiety in patients with PD and reduces situational and social anxiety, as well as avoidance behavior. © 2021 The Authors. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.


Assuntos
Terapia Cognitivo-Comportamental , Doença de Parkinson , Ansiedade/etiologia , Ansiedade/terapia , Transtornos de Ansiedade/etiologia , Transtornos de Ansiedade/terapia , Humanos , Doença de Parkinson/complicações , Doença de Parkinson/psicologia , Doença de Parkinson/terapia , Resultado do Tratamento
20.
Prev Med ; 147: 106522, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33744328

RESUMO

Strategies to reduce dementia risk are needed to minimize the burden of this growing public health concern. Most individuals are not aware that dementia risk reduction is possible, let alone how this could be achieved. Health education, such as public awareness campaigns on the topic of dementia risk reduction, can meet this need. A public health campaign (including social media and offering an online individual risk assessment tool) was carried out over a 7-month period in Flanders, Belgium. Impact was assessed in two independent online surveys, before (n = 1003) and after the campaign (n = 1008), in representative samples of adults aged 40-75 years. Questions regarding personal needs, wishes and barriers were also included. After the campaign, more individuals (10.3%) were aware that dementia risk reduction is possible than before the campaign, and more individuals correctly identified 10 out of 12 surveyed modifiable dementia risk and protective factors. However, no differences were observed in low-educated individuals. Further, specific differences in potential needs, wishes and barriers for future campaigns or interventions were observed between demographic strata. The majority of the respondents (89%) indicated that they would welcome more information on improving their brain-health. More than half (54%) also believed that they lacked the necessary knowledge to make brain-healthy behavior changes. In conclusion, effective public awareness campaigns on the topic of dementia risk reduction are feasible and timely, given the state of the evidence. Special efforts need to be made to develop effective campaigns, tailored towards low-educated individuals.


Assuntos
Demência , Adulto , Conscientização , Bélgica , Demência/prevenção & controle , Conhecimentos, Atitudes e Prática em Saúde , Promoção da Saúde , Humanos , Comportamento de Redução do Risco
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