133 results on '"Wolfs, Claire"'
Search Results
2. Moving forward with dementia: an explorative cross-country qualitative study into post-diagnostic experiences
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Hevink, Maud, primary, Linden, Iris, additional, de Vugt, Marjolein, additional, Brodaty, Henry, additional, Low, Lee-Fay, additional, Phillipson, Lyn, additional, Jeon, Yun-Hee, additional, Gresham, Meredith, additional, Doucet, Shelly, additional, Luke, Alison, additional, Vedel, Isabelle, additional, McAiney, Carrie, additional, Szcześniak, Dorota, additional, Błaszkiewicz, Maria, additional, Rymaszewska, Joanna, additional, Verhey, Frans, additional, and Wolfs, Claire, additional
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- 2024
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3. Screening for Brain Metastases in Patients With NSCLC: A Qualitative Study on the Psychologic Impact of Being Diagnosed With Asymptomatic Brain Metastases
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Schoenmaekers, Janna J.A. O., Bruinsma, Jeroen, Wolfs, Claire, Barberio, Lidia, Brouns, Anita, Dingemans, Anne-Marie C., and Hendriks, Lizza E.L.
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- 2022
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4. Caregiver Burden and Quality of Life Across Alzheimer’s Disease Severity Stages
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van Hezik-Wester, Valérie J., Handels, Ron L.H., Wolfs, Claire A.G., and Kanters, Tim A.
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- 2023
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5. Exploring diagnostic strategies for memory complaints in older adults: A retrospective general practice database study
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Linden, Iris, primary, Perry, Marieke, additional, Wolfs, Claire, additional, Schers, Henk, additional, Dirksen, Carmen, additional, and Ponds, Rudolf, additional
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- 2024
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6. Why to test for dementia: perspectives of patients, significant others and general practitioners
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Linden, Iris, primary, Wolfs, Claire, additional, Hevink, Maud, additional, Dirksen, Carmen, additional, Ponds, Rudolf, additional, and Perry, Marieke, additional
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- 2024
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7. The patient decision aid ‘Diagnostic testing for dementia or not’: Early uptake and first impressions
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Linden, Iris, primary, Heins, Pascale, additional, Wolfs, Claire, additional, Weijden, Trudy van der, additional, Dirksen, Carmen, additional, Ponds, Rudolf, additional, and Perry, Marieke, additional
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- 2023
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8. Experiences of people with dementia and informal caregivers with post‐diagnostic support: Data from the international COGNISANCE study
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Hevink, Maud, primary, Wolfs, Claire, additional, Ponds, Rudolf, additional, Doucet, Shelley, additional, McAiney, Carrie, additional, Vedel, Isabelle, additional, Maćkowiak, Maria, additional, Rymaszewska, Joanna, additional, Rait, Greta, additional, Robinson, Louise, additional, Poole, Marie, additional, Gresham, Meredith, additional, Jeon, Yun‐Hee, additional, Phillipson, Lyn, additional, Low, Lee‐Fay, additional, Brodaty, Henry, additional, de Vugt, Marjolein, additional, and Verhey, Frans, additional
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- 2023
- Full Text
- View/download PDF
9. Voorkeuren van patiënten bij dementiediagnostiek
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Linden, Iris, primary, Perry, Marieke, additional, Wolfs, Claire, additional, Hevink, Maud, additional, Dirksen, Carmen, additional, and Ponds, Rudolf, additional
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- 2022
- Full Text
- View/download PDF
10. Combinations of Service Use Types of People With Early Cognitive Disorders
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Janssen, Niels, Handels, Ron L.H., Koehler, Sebastian, Ramakers, Inez H.G.B., Hamel, Renske E.G., Olde Rikkert, Marcel G.M., Scheltens, Philip, Bouwman, Femke H., van der Flier, Wiesje M., Wolfs, Claire A.G., de Vugt, Marjolein E., Evers, Silvia M.A.A., and Verhey, Frans R.J.
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- 2016
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11. Understanding patients’ and significant others’ preferences on starting a diagnostic trajectory for dementia: An integrative review
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Linden, Iris, primary, Hevink, Maud, additional, Wolfs, Claire, additional, Perry, Marieke, additional, Dirksen, Carmen, additional, and Ponds, Rudolf, additional
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- 2022
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- View/download PDF
12. Understanding patients' and significant others' preferences on starting a diagnostic trajectory for dementia: An integrative review.
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Linden, Iris, Hevink, Maud, Wolfs, Claire, Perry, Marieke, Dirksen, Carmen, and Ponds, Rudolf
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DIAGNOSIS of dementia ,SIGNIFICANT others ,ONLINE information services ,PSYCHOLOGY information storage & retrieval systems ,CINAHL database ,MEDICAL information storage & retrieval systems ,SOCIAL support ,SYSTEMATIC reviews ,SOCIAL networks ,HEALTH status indicators ,SOCIAL factors ,SOCIAL stigma ,PATIENTS' attitudes ,SOCIOECONOMIC factors ,PSYCHOSOCIAL factors ,HEALTH attitudes ,MEMORY disorders ,DECISION making ,DESCRIPTIVE statistics ,RESEARCH funding ,MEDLINE ,THEMATIC analysis ,PATIENT-professional relations - Abstract
To explore the preferences of people with memory complaints (PwMC) and their significant others regarding starting a diagnostic trajectory for dementia. A systematic literature search was conducted in PubMed, PsycINFO, CINAHL, Web of Science, and Embase. Selection of abstracts and papers was performed independently by two researchers. Methodological quality was assessed with the Mixed Method Appraisal Tool. Result sections of the selected papers were thematically synthesized. From 2497 citations, seven qualitative studies and two mixed methods studies published between 2010 and 2020 were included. Overall quality of the studies was high to moderate. A thematic synthesis showed that preferences for starting a diagnostic trajectory arose from the feeling of needing to do something about the symptoms, beliefs on the necessity and expected outcomes of starting a diagnostic trajectory. These views were influenced by normalization or validation of symptoms, the support or wishes of the social network, interactions with health care professionals, the health status of the PwMC, and societal factors such as stigma and socioeconomic status. A variety of considerations with regard to decision-making on starting a diagnostic trajectory for dementia were identified. This emphasizes the need to explore individual preferences to facilitate a timely dementia diagnosis. [ABSTRACT FROM AUTHOR]
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- 2023
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13. Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries
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Stephan, Astrid, Bieber, Anja, Hopper, Louise, Joyce, Rachael, Irving, Kate, Zanetti, Orazio, Portolani, Elisa, Kerpershoek, Liselot, Verhey, Frans, de Vugt, Marjolein, Wolfs, Claire, Eriksen, Siren, Røsvik, Janne, Marques, Maria J., Gonçalves-Pereira, Manuel, Sjölund, Britt-Marie, Jelley, Hannah, Woods, Bob, Meyer, Gabriele, and on behalf of the Actifcare Consortium
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- 2018
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14. a longitudinal study
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Michelet, Mona, Selbaek, Geir, Strand, Bjørn Heine, Lund, Anne, Engedal, Knut, Bieber, Anja, Gonçalves-Pereira, Manuel, Hopper, Louise, Irving, Kate, Jelley, Hannah, Marques, Maria J, Orrell, Martin, Portolani, Daniel M, Sjölund, Britt-Marie, Sköldunger, Anders, Stephan, Astrid, Verhey, Frans, de Vugt, Marjolein, Wolfs, Claire, Woods, Bob, Zanetti, Orazio, Bergh, Sverre, Comprehensive Health Research Centre (CHRC) - pólo NMS, Centro de Estudos de Doenças Crónicas (CEDOC), and NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)
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needs assessment ,daytime activities ,Dementia ,BPSD ,company - Abstract
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
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- 2021
15. Implementation of a diagnostic decision aid for people with memory complaints and their general practitioners: a protocol of a before and after pilot trial
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Linden, Iris, primary, Wolfs, Claire, additional, Perry, Marieke, additional, Metsemakers, Job, additional, van der Weijden, Trudy, additional, de Vugt, Marjolein, additional, Verhey, Frans R, additional, Handels, Ron, additional, Olde Rikkert, Marcel, additional, Dirksen, Carmen, additional, and Ponds, Rudolf W H M, additional
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- 2021
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16. Needs for Care and Service Use in Dementia: Baseline Assessment of Portuguese Participants in the Actifcare Cohort Study
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Goncalves-Pereira, Manuel, Marques, Maria J., Balsinha, Conceicao, Fernandes, Alexandra, Machado, Ana Sa, Verdelho, Ana, Barahona-Correa, Bernardo, Barrios, Helena, Guimaraes, Joao, Grave, Joana, Alves, Luisa, de Almeida, Manuel Caldas, Reis, Teresa, Orrell, Martin, Woods, Bob, De Vugt, Marjolein, Verhey, Frans, Wolfs, Claire, Handels, Ron, Kerpershoek, Liselot, Meyer, Gabriele, Stephan, Astrid, Bieber, Anja, Broda, Anja, Bartoszek, Gabriele, Jelley, Hannah, Wimo, Anders, Skoldunger, Anders, Sjolund, Britt-Marie, Engedal, Knut, Selbaek, Geir, Michalet, Mona, Rosvik, Janne, Eriksen, Siren, Irving, Kate, Hopper, Louise, Joyce, Rachael, Zanetti, Orazio, Portolani, Elisa, FCT (FCT-JPND-HC-0001/2012 e PD/ BD/128011/2016), EU Joint Programme – Neurodegenerative Disease Research), JPND/2013/2, Psychiatrie & Neuropsychologie, RS: MHeNs - R1 - Cognitive Neuropsychiatry and Clinical Neuroscience, MUMC+: MA Med Staf Spec Psychiatrie (9), and Promovendi MHN
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lcsh:Medicine ,Caregivers ,Dementia ,Health Services Accessibility ,Needs Assessment ,Portugal ,HOSPITAL ANXIETY ,VALIDATION ,03 medical and health sciences ,0302 clinical medicine ,030212 general & internal medicine ,OLDER-PEOPLE ,VALIDITY ,lcsh:R5-920 ,Acesso aos Serviços de Saúde ,lcsh:R ,General Medicine ,Cuidadores ,STATE ,030227 psychiatry ,ELDERLY CANE ,Determinação de Necessidades de Cuidados de Saúde ,CAMBERWELL ASSESSMENT ,lcsh:Medicine (General) ,BURDEN ,Demência - Abstract
Introdução: As pessoas com demência e os seus familiares deveriam ter acesso atempado a cuidados formais na comunidade (centros de dia, apoio domiciliário). O projecto EU-Actifcare investigou o acesso/utilização destes serviços em países europeus. Descrevemos a implementação do estudo de coorte e a avaliação inicial em Portugal, com foco nas necessidades de cuidados e recurso aos serviços.Material e Métodos: Selecionámos uma amostra de conveniência de 66 pessoas com diagnóstico de demência ligeira a moderada (residindo na comunidade sem cuidados formais relevantes) e respetivos familiares-cuidadores. A avaliação (clínico-funcional e social) incluiu os instrumentos Camberwell Assessment of Need for the Elderly e Resource Utilization in Dementia.Resultados: Identificámos necessidades não-cobertas dos doentes (média 1,1; DP = 1,7), principalmente de companhia (23% dos casos), sofrimento psicológico (20%) e atividades diárias (14%). Os familiares-cuidadores dedicavam 150 minutos/dia (mediana) à prestação de cuidados e 44% apresentavam necessidades não-cobertas de sofrimento psicológico. Quando havia problemas de acesso/utilização dos serviços de saúde e sociais na comunidade, estes estavam frequentemente relacionados com recusa ou desconhecimento de utentes/familiares.Discussão: A seleção dos participantes não foi fácil, pela especificidade dos critérios adotados. Não almejando representatividade nacional, recrutámos uma amostra típica de pessoas em estádios ligeiros a moderados de demência, em serviços e regiões diferentes. Nalguns casos, encontrámos necessidades não-cobertas e repercussões familiares que já justificariam respostas de serviços na comunidade, não fossem os problemas de acesso/utilização.Conclusão: Na área das demências, existem dificuldades no acesso atempado e utilização efectiva de cuidados formais, coexistindo com uma cobertura menor de necessidades específicas.
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- 2019
17. a Delphi process conducted by the Actifcare project
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Røsvik, Janne, Michelet, Mona, Engedal, Knut, Bergh, Sverre, Bieber, Anja, Gonçalves-Pereira, Manuel, Portolani, Daniel Michael, Hopper, Louise, Irving, Kate, Jelley, Hannah, Kerpershoek, Liselot, Meyer, Gabriele, Marques, Maria J., Sjølund, Britt Marie, Sköldunger, Anders, Stephan, Astrid, Verhey, Frans, de Vugt, Marjolein, Woods, Bob, Wolfs, Claire, Zanetti, Orazio, Selbaek, Geir, NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM), Centro de Estudos de Doenças Crónicas (CEDOC), and Comprehensive Health Research Centre (CHRC) - pólo NMS
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services ,Psychiatry and Mental health ,access ,SDG 3 - Good Health and Well-being ,consensus ,best practice ,Phychiatric Mental Health ,Delphi process ,Dementia ,Geriatrics and Gerontology ,Gerontology - Abstract
Funding: The Research Council of Norway; Portugal, Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did not influence the design of the study or the content of the manuscript Objectives: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. Method: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. Results: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access. Coordination and flexibility in setting and type of services were among the Recommendations to enhance use. Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. Conclusion: The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers. publishersversion published
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- 2021
18. Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study.
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Michelet, Mona, Selbaek, Geir, Strand, Bjørn Heine, Lund, Anne, Engedal, Knut, Bieber, Anja, Gonçalves-Pereira, Manuel, Hopper, Louise, Irving, Kate, Jelley, Hannah, Marques, Maria J., Orrell, Martin, Portolani, Daniel M., Sjölund, Britt-Marie, Sköldunger, Anders, Stephan, Astrid, Verhey, Frans, de Vugt, Marjolein, Wolfs, Claire, and Woods, Bob
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ACTIVITIES of daily living ,DEMENTIA patients ,BEHAVIOR disorders ,SEVERITY of illness index ,ALEXITHYMIA ,QUESTIONNAIRES ,NEEDS assessment ,MEDICAL needs assessment ,LONGITUDINAL method - Abstract
To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. 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. 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. Interventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia. [ABSTRACT FROM AUTHOR]
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- 2022
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19. Is there equity in initial access to formal dementia care in Europe? The Andersen model applied to the Actifcare cohort
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Kerpershoek, Liselot, de Vugt, Marjolein, Wolfs, Claire, Orrell, Martin, Woods, Bob, Jelley, Hannah, Meyer, Gabriele, Selbaek, Geir, Michelet, Mona, Irving, Kate, Hopper, Louise, Gonçalves-Pereira, Manuel, Zanetti, Orazio, and Verhey, Frans
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accesstocare ,Andersenmodel ,equity ,middle‐stage dementia ,service use - Abstract
Objectives:In the current study, the Anderson model is used to determine equita-ble access to dementia care in Europe. Predisposing, enabling, and need variableswere investigated to find out whether there is equitable access to dementia‐specificformal care services. Results can identify which specific factors should be a target toimprove access.Methods:A total of 451 People with middle‐stage dementia and their informalcarers from eight European countries were included. At baseline, there was no useof formal care yet, but people were expected to start using formal care within thenext year. Logistic regressions were carried out with one of four clusters of serviceuse as dependent variables (home social care, home personal care, day care, admis-sion). The independent variables (predisposing, enabling, and need variables) wereadded to the regression in blocks.Results:The most significant predictors for the different care clusters are diseaseseverity, a higher sum of (un)met needs, hours spent on informal care, living alone,age, region of residence, and gender.Conclusion:The Andersen model provided for this cohort the insight that (besidesneed factors) the predisposing variables region of residence, gender, and age do playa role in finding access to care. In addition, it showed us that the numbers of hoursspent on informal care, living alone, needs, and disease severity are also importantpredictors within the model's framework. Health care professionals should pay atten-tion to these predisposing factors to ensure that they do not become barriers forthose in need for care.
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- 2019
20. Development of best practice recommendations to enhance access to and use of formal community care services for people with dementia in Europe: a Delphi process conducted by the Actifcare project
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Røsvik, Janne, primary, Michelet, Mona, additional, Engedal, Knut, additional, Bergh, Sverre, additional, Bieber, Anja, additional, Gonçalves-Pereira, Manuel, additional, Portolani, Daniel Michael, additional, Hopper, Louise, additional, Irving, Kate, additional, Jelley, Hannah, additional, Kerpershoek, Liselot, additional, Meyer, Gabriele, additional, Marques, Maria J., additional, Sjølund, Britt-Marie, additional, Sköldunger, Anders, additional, Stephan, Astrid, additional, Verhey, Frans, additional, de Vugt, Marjolein, additional, Woods, Bob, additional, Wolfs, Claire, additional, Zanetti, Orazio, additional, and Selbaek, Geir, additional
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- 2020
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21. Development of best practice recommendations to enhance access to and use of formal community care services for people with dementia in Europe: a Delphi process conducted by the Actifcare project.
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Røsvik, Janne, Michelet, Mona, Engedal, Knut, Bergh, Sverre, Bieber, Anja, Gonçalves-Pereira, Manuel, Portolani, Daniel Michael, Hopper, Louise, Irving, Kate, Jelley, Hannah, Kerpershoek, Liselot, Meyer, Gabriele, Marques, Maria J., Sjølund, Britt-Marie, Sköldunger, Anders, Stephan, Astrid, Verhey, Frans, de Vugt, Marjolein, Woods, Bob, and Wolfs, Claire
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DEMENTIA prevention ,CONSENSUS (Social sciences) ,MEDICAL quality control ,HEALTH services accessibility ,COMMUNITY health services ,MEDICAL personnel ,PATIENT-centered care ,HUMAN services programs ,DEMENTIA patients ,PSYCHOLOGY of caregivers ,PSYCHOSOCIAL factors ,SCALE analysis (Psychology) ,DESCRIPTIVE statistics ,QUALITY of life ,DELPHI method - Abstract
Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access. Coordination and flexibility in setting and type of services were among the Recommendations to enhance use. Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers. [ABSTRACT FROM AUTHOR]
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- 2021
- Full Text
- View/download PDF
22. Determinants of Cross-Sectional and Longitudinal Health-Related Quality of Life in Memory Clinic Patients Without Dementia
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Banning, Leonie C. P., primary, Janssen, Eveline P. C. J., additional, Hamel, Renske E. G., additional, de Vugt, Marjolein, additional, Köhler, Sebastian, additional, Wolfs, Claire A. G., additional, Oosterveld, Saskia M., additional, Melis, Rene J. F., additional, Olde Rikkert, Marcel G. M., additional, Kessels, Roy P. C., additional, Pijnenburg, Yolande A. L., additional, Koene, Ted, additional, van der Flier, Wiesje M., additional, Scheltens, Philip, additional, Visser, Pieter Jelle, additional, Verhey, Frans R. J., additional, Aalten, Pauline, additional, and Ramakers, Inez H. G. B., additional
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- 2019
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23. Optimizing access to and use of formal dementia care: qualitative findings from the European Actifcare study
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Kerpershoek, Liselot, Wolfs, Claire, Verhey, Frans, Jelley, Hannah, Woods, Bob, Bieber, Anja, Hopper, Louise, Irving, Kate, Marques, Maria J., Gonçalves-Pereira, Manuel, and Vugt, Marjolein
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access to care ,dementia, in‐depth interviews ,informal care ,service use - Abstract
This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi‐structured in‐depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross‐national analysis. Overall, analysis of the in‐depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease‐related factors and system‐related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care‐giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision‐making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified.
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- 2019
24. Supplemental Material, Appendix_revised - Determinants of Cross-Sectional and Longitudinal Health-Related Quality of Life in Memory Clinic Patients Without Dementia
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Banning, Leonie C. P., Janssen, Eveline P. C. J., Hamel, Renske E. G., Vugt, Marjolein De, Köhler, Sebastian, Wolfs, Claire A. G., Oosterveld, Saskia M., Melis, Rene J. F., Rikkert, Marcel G. M. Olde, Kessels, Roy P. C., Pijnenburg, Yolande A. L., Koene, Ted, Flier, Wiesje M. Van Der, Scheltens, Philip, Visser, Pieter Jelle, Verhey, Frans R. J., Aalten, Pauline, and Ramakers, Inez H. G. B.
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FOS: Psychology ,FOS: Clinical medicine ,170199 Psychology not elsewhere classified ,110319 Psychiatry (incl. Psychotherapy) ,110308 Geriatrics and Gerontology ,110904 Neurology and Neuromuscular Diseases ,Neuroscience - Abstract
Supplemental Material, Appendix_revised for Determinants of Cross-Sectional and Longitudinal Health-Related Quality of Life in Memory Clinic Patients Without Dementia by Leonie C. P. Banning, Eveline P. C. J. Janssen, Renske E. G. Hamel, Marjolein de Vugt, Sebastian Köhler, Claire A. G. Wolfs, Saskia M. Oosterveld, Rene J. F. Melis, Marcel G. M. Olde Rikkert, Roy P. C. Kessels, Yolande A. L. Pijnenburg, Ted Koene, Wiesje M. van der Flier, Philip Scheltens, Pieter Jelle Visser, Frans R. J. Verhey, Pauline Aalten and Inez H. G. B. Ramakers in Journal of Geriatric Psychiatry and Neurology
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- 2019
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25. Findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries
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Stephan, Astrid, Bieber, Anja, Hopper, Louise, Joyce, Rachael, Irving, Kate, Zanetti, Orazio, Portolani, Elisa, Kerpershoek, Liselot, Verhey, Frans, De Vugt, Marjolein, Wolfs, Claire, Eriksen, Siren, Røsvik, Janne, Marques, Maria J., Gonçalves-Pereira, Manuel, Sjölund, Britt Marie, Jelley, Hannah, Woods, Bob, Meyer, Gabriele, Handels, Ron, Broda, Anja, Bartoszek, Gabriele, Woods, Bob T., Orrell, Martin, Wimo, Anders, Sköldunger, Anders, Engedal, Knut, Selbæk, Geir, Michelet, Mona, Conceição Balsinha, M., Bárrios, Helena, Machado, Ana, Centro de Estudos de Doenças Crónicas (CEDOC), and NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)
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Formal care ,Utilisation ,Dementia ,Informal carer ,Person with dementia ,Geriatrics and Gerontology ,Focus groups - Abstract
This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project (http://www.jpnd.eu). The project is supported through the following national funding organisations under the aegis of JPND: Germany, Ministry of Education and Research; Ireland, Health research board; Italy, Ministry of Health; the Netherlands, The Netherlands organisation for Health Research and Development; Sweden, The Swedish Research Council for Health, Working Life and Welfare; Norway, The Research Council of Norway; Portugal, Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did not influence the design of the study or the content of the manuscript. We acknowledge the financial support within the funding programme Open Access Publishing by the German Research Foundation (DFG). Background: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals. Method: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports. Results: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives. Conclusion: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families. publishersversion published
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- 2018
26. Additional file 1: of Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries
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Stephan, Astrid, Bieber, Anja, Hopper, Louise, Joyce, Rachael, Irving, Kate, Zanetti, Orazio, Portolani, Elisa, Kerpershoek, Liselot, Verhey, Frans, Vugt, Marjolein De, Wolfs, Claire, Siren Eriksen, Røsvik, Janne, Marques, Maria J., Gonçalves-Pereira, Manuel, Britt-Marie Sjölund, Jelley, Hannah, Woods, Bob, and Meyer, Gabriele
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Actifcare_topic guide. The topic guide which was used in the focus groups across all countries. (DOCX 47 kb)
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- 2018
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27. Interventions to enhance access to and utilization of formal community care services for home dwelling persons with dementia and their informal carers. A scoping review
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Røsvik, Janne, primary, Michelet, Mona, additional, Engedal, Knut, additional, Bieber, Anja, additional, Broda, Anja, additional, Gonçalves-Pereira, Manuel, additional, Hopper, Louise, additional, Irving, Kate, additional, Jelley, Hannah, additional, Kerpershoek, Liselot, additional, Meyer, Gabriele, additional, Marques, Maria J., additional, Portolani, Elisa, additional, Sjölund, Britt-Marie, additional, Sköldunger, Anders, additional, Stephan, Astrid, additional, Verhey, Frans, additional, de Vugt, Marjolein, additional, Woods, Bob, additional, Wolfs, Claire, additional, Zanetti, Orazio, additional, and Selbaek, Geir, additional
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- 2019
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28. Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice
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Kerpershoek, Liselot, de Vugt, Marjolein, Wolfs, Claire, Woods, Bob, Jelley, Hannah, Orrell, Martin, Stephan, Astrid, Bieber, Anja, Hopper, Louise, Irving, Kate, and Verhey, Frans
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Dementia ,(un)met needs ,informal carer ,quality of life - Abstract
Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL). Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses. Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both. Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs.
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- 2017
29. Carers' experiences of timely access to and use of dementia care services in eight European countries.
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Jelley, Hannah, Kerpershoek, Liselot, Verhey, Frans, Wolfs, Claire, de Vugt, Marjolein, Bieber, Anja, Stephan, Astrid, Meyer, Gabriele, Michelet, Mona, Selbaek, Geir, Sjölund, Britt-Marie, Sköldunger, Anders, Hopper, Louise, Irving, Kate, Marques, Maria, Balsinha, Maria Conceição, Gonçalves-Pereira, Manuel, Portolani, Daniel Michael, Zanetti, Orazio, and Woods, Bob
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PSYCHOLOGICAL adaptation ,PSYCHOLOGY of caregivers ,CONTENT analysis ,DEMENTIA patients ,HEALTH ,HEALTH services accessibility ,INTERVIEWING ,RESEARCH methodology ,MEDICAL care use ,PSYCHOLOGY of Minorities ,NEEDS assessment ,PRIMARY health care ,SATISFACTION ,INFORMATION resources ,SOCIAL support ,CAREGIVER attitudes ,DESCRIPTIVE statistics - Abstract
Timely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed. [ABSTRACT FROM AUTHOR]
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- 2021
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30. Determinants of Cross-Sectional and Longitudinal Health-Related Quality of Life in Memory Clinic Patients Without Dementia.
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Banning, Leonie C. P., Janssen, Eveline P. C. J., Hamel, Renske E. G., de Vugt, Marjolein, Köhler, Sebastian, Wolfs, Claire A. G., Oosterveld, Saskia M., Melis, Rene J. F., Olde Rikkert, Marcel G. M., Kessels, Roy P. C., Pijnenburg, Yolande A. L., Koene, Ted, van der Flier, Wiesje M., Scheltens, Philip, Visser, Pieter Jelle, Verhey, Frans R. J., Aalten, Pauline, and Ramakers, Inez H. G. B.
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QUALITY of life ,DEMENTIA patients ,MINI-Mental State Examination ,COMORBIDITY ,COGNITIVE ability ,CLINICS - Abstract
Objective: To identify determinants within 3 different domains (ie, somatic comorbidities, cognitive functioning, and neuropsychiatric symptoms [NPS]) of health-related quality of life (HRQoL) over time in memory clinic patients without dementia.Methods: This longitudinal multicenter cohort study with a 3-year observation period recruited 315 individuals (age: 69.8 ± 8.6, 64.4% males, Mini-Mental State Examination score 26.9 ± 2.6). A multivariable explanatory model was built using linear mixed effects models (forward selection per domain) to select determinants for self-perceived HRQoL over time, as measured by the EuroQoL-5D visual analogue scale (EQ VAS).Results: Mean HRQoL at study entry was 69.4 ± 15.6. The presence of agitation, appetite and eating abnormalities, and eyes/ears/nose (ie, sensory impairment) comorbidities were associated with a change in HRQoL over time. Agitation was most strongly associated with HRQoL over time.Conclusions: The association of somatic comorbidities and NPS in memory clinic patients with course of HRQoL shows that these should receive more awareness, detection, and monitoring by clinicians. [ABSTRACT FROM AUTHOR]- Published
- 2020
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31. Perspectives of policy and political decision makers on access to formal dementia care: Expert interviews in eight European countries
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Broda, Anja, Bieber, Anja, Meyer, Gabriele, Hopper, Louise, Joyce, Rachael, Irving, Kate, Zanetti, Orazio, Portolani, Elisa, Kerpershoek, Liselot, Verhey, Frans, Vugt, Marjolein De, Wolfs, Claire, Eriksen, Siren, Røsvik, Janne, Marques, Maria J., Gonçalves-Pereira, Manuel, Sjölund, Britt Marie, Woods, Bob, Jelley, Hannah, Orrell, Martin, Stephan, Astrid, Centro de Estudos de Doenças Crónicas (CEDOC), and NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)
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SDG 3 - Good Health and Well-being ,Health Policy ,Access to formal dementia care ,Dementia ,Expert interviews - Abstract
Background: As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers. Methods: Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4-7 experts (total N = 38). The interview guide addressed the topics "Complexity and Continuity of Care", "Formal Services", and "Public Awareness". Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries. Results: The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness. Conclusions: Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations. publishersversion published
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- 2017
32. Additional file 1: of Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries
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Broda, Anja, Bieber, Anja, Meyer, Gabriele, Hopper, Louise, Joyce, Rachael, Irving, Kate, Zanetti, Orazio, Portolani, Elisa, Kerpershoek, Liselot, Verhey, Frans, Vugt, Marjolein, Wolfs, Claire, Siren Eriksen, RøSvik, Janne, Marques, Maria, GonçAlves-Pereira, Manuel, Britt-Marie SjÜlund, Woods, Bob, Jelley, Hannah, Orrell, Martin, and Stephan, Astrid
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Data_FILES ,ComputingMethodologies_DOCUMENTANDTEXTPROCESSING - Abstract
The interview guide used in this study is available as supplementary file with the file name Broda_Suppl_interview guide.pdf. (PDF 53 kb)
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- 2017
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33. Erratum : Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study (BMC Health Services Research (2016) 16 (620) DOI: 10.1186/s12913-016-1672-3)
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Kerpershoek, Liselot, De Vugt, Marjolein, Wolfs, Claire, Jelley, Hannah, Orrell, Martin, Woods, Bob, Stephan, Astrid, Bieber, Anja, Meyer, Gabriele, Engedal, Knut, Selbaek, Geir, Handels, Ron, Wimo, Anders, Hopper, Louise, Irving, Kate, Marques, Maria João Lopes, Goncalves-Pereira, Manuel, Portolani, Elisa, Zanetti, Orazio, Verhey, Frans, Consortium, Actifcare, Centro de Estudos de Doenças Crónicas (CEDOC), and NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)
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[No abstract available] publishersversion published
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- 2016
34. Do caregiver profiles predict the use of dementia care services? Findings from the Actifcare study.
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Kerpershoek, Liselot, Woods, Bob, Wolfs, Claire, Verhey, Frans, Jelley, Hannah, Bieber, Anja, Stephan, Astrid, Michelet, Mona, Selbaek, Geir, Handels, Ron, Wimo, Anders, Hopper, Louise, Irving, Kate, Marques, Maria J., Gonçalves-Pereira, Manuel, Portolani, Elisa, Zanetti, Orazio, and de Vugt, Marjolein
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ALZHEIMER'S disease treatment ,TREATMENT of dementia ,PERSONAL beauty ,HEALTH services accessibility ,HOME care services ,HOSPITAL admission & discharge ,PATIENTS ,LOGISTIC regression analysis ,SOCIAL support ,ADULT day care ,CAREGIVER attitudes - Abstract
Objectives: Previously developed dementia caregiver profiles defined by caregiver age and burden, have been associated with caregiver quality of life, depression and perseverance time. The current aim was to investigate whether these caregiver profiles could predict subsequent service use. In addition, non-personal (e.g. meals on wheels) and supportive services (e.g. Alzheimer café) in early dementia were investigated as predictors. Methods: A total of 451 dyads of people with dementia and their informal caregivers from eight European countries were followed for one year. People were included if they did not use formal (personal) care but were expected to do so within 1 year. Logistic regression analyses were used with four clusters of service use as dependent variables (home social care, home personal care, day care and admission). The independent variables were caregiver profiles, and non-personal and supportive services at baseline. Results: Caregiver profiles were significant predictors of service use; those experiencing high strain were more likely to use formal care. The use of low-intensity, less intrusive services at baseline significantly predicted the use of home personal care and admission at follow-up. The use of day care at follow-up was predicted by the baseline use of supportive services. Conclusion: Caregiver profiles are valuable predictors for service use: this knowledge can aid professionals in ensuring optimal access to services, which is important for maintaining independence at home. In addition, the use of supportive and less intrusive, non-personal services in the early stages of dementia is to be advised. [ABSTRACT FROM AUTHOR]
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- 2020
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35. Interventions to enhance access to and utilization of formal community care services for home dwelling persons with dementia and their informal carers. A scoping review.
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Røsvik, Janne, Michelet, Mona, Engedal, Knut, Bieber, Anja, Broda, Anja, Gonçalves-Pereira, Manuel, Hopper, Louise, Irving, Kate, Jelley, Hannah, Kerpershoek, Liselot, Meyer, Gabriele, Marques, Maria J., Portolani, Elisa, Sjölund, Britt-Marie, Sköldunger, Anders, Stephan, Astrid, Verhey, Frans, de Vugt, Marjolein, Woods, Bob, and Wolfs, Claire
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CAREGIVERS ,CINAHL database ,COMMUNITY health services ,DEMENTIA patients ,HEALTH services accessibility ,INFORMATION storage & retrieval systems ,MEDICAL databases ,PSYCHOLOGY information storage & retrieval systems ,MEDICAL care use ,MEDICAL referrals ,MEDLINE ,ONLINE information services ,SYSTEMATIC reviews ,LITERATURE reviews ,SOCIAL services case management ,INDEPENDENT living - Abstract
Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services. Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use. Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes. Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field. [ABSTRACT FROM AUTHOR]
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- 2020
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36. Is there equity in initial access to formal dementia care in Europe? The Andersen Model applied to the Actifcare cohort.
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Kerpershoek, Liselot, Vugt, Marjolein, Wolfs, Claire, Orrell, Martin, Woods, Bob, Jelley, Hannah, Meyer, Gabriele, Bieber, Anja, Stephan, Astrid, Selbæk, Geir, Michelet, Mona, Wimo, Anders, Handels, Ron, Irving, Kate, Hopper, Louise, Gonçalves‐Pereira, Manuel, Balsinha, Conceição, Zanetti, Orazio, Portolani, Daniel, and Verhey, Frans
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ANDERSON model ,MEDICAL personnel ,DEMENTIA - Abstract
Objectives: In the current study, the Anderson model is used to determine equitable access to dementia care in Europe. Predisposing, enabling, and need variables were investigated to find out whether there is equitable access to dementia-specific formal care services. Results can identify which specific factors should be a target to improve access.Methods: A total of 451 People with middle-stage dementia and their informal carers from eight European countries were included. At baseline, there was no use of formal care yet, but people were expected to start using formal care within the next year. Logistic regressions were carried out with one of four clusters of service use as dependent variables (home social care, home personal care, day care, admission). The independent variables (predisposing, enabling, and need variables) were added to the regression in blocks.Results: The most significant predictors for the different care clusters are disease severity, a higher sum of (un)met needs, hours spent on informal care, living alone, age, region of residence, and gender.Conclusion: The Andersen model provided for this cohort the insight that (besides need factors) the predisposing variables region of residence, gender, and age do play a role in finding access to care. In addition, it showed us that the numbers of hours spent on informal care, living alone, needs, and disease severity are also important predictors within the model's framework. Health care professionals should pay attention to these predisposing factors to ensure that they do not become barriers for those in need for care. [ABSTRACT FROM AUTHOR]- Published
- 2020
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37. Access to timely formal dementia care in Europe
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Kerpershoek, Liselot, De Vugt, Marjolein, Wolfs, Claire, Jelley, Hannah, Orrel, Martin, Woods, Bob, Stephan, Astrid, Bieber, Anja, Meyer, Gabriele, Engedal, Knut, Selbaek, Geir, Handels, Ron, Wimo, Anders, Hopper, Louise, Irving, Kate, Marques, Maria João Lopes, Gonçalves-Pereira, Manuel, Portolani, Elisa, Zanetti, Orazio, Verhey, Frans, Centro de Estudos de Doenças Crónicas (CEDOC), and NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)
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Formal care ,SDG 3 - Good Health and Well-being ,Service use ,Health Policy ,Dementia ,Needs - Abstract
The project is supported through the following funding organizations under the aegis of JPND - www.jpnd.eu. Germany, Ministry of Education and Research, Ireland, Health research board, Italy, Ministry of Health, the Netherlands, The Netherlands organization for Health Research and Development, Sweden, The Swedish Research Council for Health, Working Life and Welfare, Norway, The Research Council of Norway, Portugal, Foundation for Science and Technology, (Fundação para a Ciência e Tecnologia (FCT - JPND-HC/0001/2012), United Kingdom, Economic and Social Research Council. JPND has read and approved of the protocol of the Actifcare study. Background: Previous findings indicate that people with dementia and their informal carers experience difficulties accessing and using formal care services due to a mismatch between needs and service use. This mismatch causes overall dissatisfaction and is a waste of the scarce financial care resources. This article presents the background and methods of the Actifcare (ACcess to Timely Formal Care) project. This is a European study aiming at best-practice development in finding timely access to formal care for community-dwelling people with dementia and their informal carers. There are five main objectives: 1) Explore predisposing and enabling factors associated with the use of formal care, 2) Explore the association between the use of formal care, needs and quality of life and 3) Compare these across European countries, 4) Understand the costs and consequences of formal care services utilization in people with unmet needs, 5) Determine the major costs and quality of life drivers and their relationship with formal care services across European countries. Methods: In a longitudinal cohort study conducted in eight European countries approximately 450 people with dementia and informal carers will be assessed three times in 1 year (baseline, 6 and 12 months). In this year we will closely monitor the process of finding access to formal care. Data on service use, quality of life and needs will be collected. Discussion: The results of Actifcare are expected to reveal best-practices in organizing formal care. Knowledge about enabling and predisposing factors regarding access to care services, as well as its costs and consequences, can advance the state of the art in health systems research into pathways to dementia care, in order to benefit people with dementia and their informal carers. publishersversion published
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- 2016
38. Access to timely formal dementia care in Europe: protocol of the Actifcare (ACcess to Timely Formal Care) study(vol 16, 423, 2016)
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Kerpershoek, Liselot, De Vugt, Marjolein, Wolfs, Claire, Jelley, Hannah, Orrell, Martin, Woods, Bob, Stephan, Astrid, Bieber, Anja, Meyer, Gabriele, Engedal, Knut, Selbaek, Geir, Handels, Ron, Wimo, Anders, Hopper, Louise, Irving, Kate, Marques, Maria João Lopes, Goncalves-Pereira, Manuel, Portolani, Elisa, Zanetti, Orazio, Verhey, Frans, Consortium, Actifcare, Centro de Estudos de Doenças Crónicas (CEDOC), and NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)
- Abstract
publishersversion published
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- 2016
39. Caregiver profiles in dementia related to quality of life, depression and perseverance time in the European Actifcare study: the importance of social health
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Janssen, Eveline P.C.J., primary, de Vugt, Marjolein, additional, Köhler, Sebastian, additional, Wolfs, Claire, additional, Kerpershoek, Liselot, additional, Handels, Ron L.H., additional, Orrell, Martin, additional, Woods, Bob, additional, Jelley, Hannah, additional, Stephan, Astrid, additional, Bieber, Anja, additional, Meyer, Gabriele, additional, Engedal, Knut, additional, Selbaek, Geir, additional, Wimo, Anders, additional, Irving, Kate, additional, Hopper, Louise, additional, Gonçalves-Pereira, Manuel, additional, Portolani, Elisa, additional, Zanetti, Orazio, additional, and Verhey, Frans R., additional
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- 2016
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40. The Diagnostic and Prognostic Value of Neuropsychological Assessment in Memory Clinic Patients
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Jansen, Willemijn J., primary, Handels, Ron L.H., additional, Visser, Pieter Jelle, additional, Aalten, Pauline, additional, Bouwman, Femke, additional, Claassen, Jurgen, additional, van Domburg, Peter, additional, Hoff, Erik, additional, Hoogmoed, Jan, additional, Leentjens, Albert F.G., additional, Rikkert, Marcel Olde, additional, Oleksik, Ania M., additional, Smid, Machiel, additional, Scheltens, Philip, additional, Wolfs, Claire, additional, Verhey, Frans, additional, and Ramakers, Inez H.G.B., additional
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- 2016
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41. Impact of Untimely Access to Formal Care on Costs and Quality of Life in Community Dwelling People with Dementia.
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Janssen, Niels, Handels, Ron L., Sköldunger, Anders, Woods, Bob, Jelley, Hannah, Edwards, Rhiannon Tudor, Orrell, Martin, Selbæk, Geir, Røsvik, Janne, Gonçalves-Pereira, Manuel, Marques, Maria J., Zanetti, Orazio, Portolani, Elisa, Irving, Kate, Hopper, Louise, Meyer, Gabriele, Bieber, Anja, Stephan, Astrid, Kerpershoek, Liselot, and Wolfs, Claire A.G.
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QUALITY of life ,DEMENTIA ,HEALTH services accessibility ,MEDICAL care costs ,NEEDS assessment - Abstract
Background: Access to formal care is not always timely and a better understanding on the impact of untimely access is needed.Objective: To examine, from a societal perspective, the impact of untimely access to formal care in terms of total costs and quality of life over one year in community dwelling people with dementia.Methods: Within the Actifcare study, needs, resource use, and quality of life were observed for one year in a cohort of 451 community dwelling people with dementia in 8 European countries. Untimely access to care was operationalized as having at least one unmet need for care identified by the Camberwell Assessment of Need for the Elderly (CANE) instrument. Two regression models were built for both total costs and quality of life measured by the EQ-5D-5L, one using sum of unmet needs and one using a predefined selection of need items.Results: Unmet needs were not associated with higher total costs but they were associated with a lower quality of life of people with dementia. Of all CANE items, only an unmet need for "company" was significantly related to lower total costs.Conclusion: Total costs did not seem to differ between participants with unmet and met needs. Only few associations between specific unmet needs and costs and quality of life were found. Furthermore, quality of life of people with dementia decreases when multiple unmet needs are experienced, indicating that assessing and meeting needs is important to improve quality of life. [ABSTRACT FROM AUTHOR]- Published
- 2018
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42. Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study.
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Handels, Ron L.H., Sköldunger, Anders, Bieber, Anja, Edwards, Rhiannon Tudor, Gonçalves-Pereira, Manuel, Hopper, Louise, Irving, Kate, Jelley, Hannah, Kerpershoek, Liselot, Marques, Maria J., Meyer, Gabriele, Michelet, Mona, Portolani, Elisa, Røsvik, Janne, Selbaek, Geir, Stephan, Astrid, de Vugt, Marjolein, Wolfs, Claire, Woods, Bob, and Zanetti, Orazio
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QUALITY of life ,DEMENTIA ,MEDICAL care use ,MEDICAL care costs ,CAREGIVERS - Abstract
Background: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care.Objective: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs.Methods: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self- and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression.Results: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL.Conclusion: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care. [ABSTRACT FROM AUTHOR]- Published
- 2018
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43. Added Prognostic Value of Cerebrospinal Fluid Biomarkers in Predicting Decline in Memory Clinic Patients in a Prospective Cohort
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Handels, Ron L.H., primary, Joore, Manuela A., additional, Vos, Stephanie J.B., additional, Aalten, Pauline, additional, Ramakers, Inez H.G.B., additional, Rikkert, Marcel Olde, additional, Scheltens, Philip, additional, Jansen, Willemijn J., additional, Visser, Pieter-Jelle, additional, van Berckel, Bart M.N., additional, van Domburg, Peter, additional, Smid, Machiel, additional, Hoff, Erik, additional, Hoogmoed, Jan, additional, Bouwman, Femke, additional, Claassen, Jurgen, additional, Leentjens, Albert F.G., additional, Wolfs, Claire A.G., additional, Severens, Johan L., additional, and Verhey, Frans R.J., additional
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- 2016
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44. Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice.
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Kerpershoek, Liselot, de Vugt, Marjolein, Wolfs, Claire, Woods, Bob, Jelley, Hannah, Orrell, Martin, Stephan, Astrid, Bieber, Anja, Meyer, Gabriele, Selbaek, Geir, Handels, Ron, Wimo, Anders, Hopper, Louise, Irving, Kate, Marques, Maria, Gonçalves-Pereira, Manuel, Portolani, Elisa, Zanetti, Orazio, Verhey, Frans, and the Actifcare Consortium
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TREATMENT of dementia ,PSYCHOLOGY of caregivers ,HEALTH services accessibility ,HEALTH status indicators ,NEEDS assessment ,QUALITY of life ,MULTIPLE regression analysis ,SOCIAL support ,BURDEN of care ,CAREGIVER attitudes ,PATIENTS' attitudes - Abstract
Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL). Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses. Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both. Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support QOL. The perspectives of people with dementia are informative when identifying needs. [ABSTRACT FROM AUTHOR]
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- 2018
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45. Early cost‐utility analysis of general and cerebrospinal fluid‐specific Alzheimer's disease biomarkers for hypothetical disease‐modifying treatment decision in mild cognitive impairment
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Handels, Ron L.H., primary, Joore, Manuela A., additional, Tran‐Duy, An, additional, Wimo, Anders, additional, Wolfs, Claire A.G., additional, Verhey, Frans R.J., additional, and Severens, Johan L., additional
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- 2015
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46. The benefit of a geriatric nurse practitioner in a multidisciplinary diagnostic service for people with cognitive disorders
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Ament, Bart H L, primary, Wolfs, Claire A G, additional, Kempen, Gertrudis I J M, additional, Ambergen, Ton, additional, Verhey, Frans R J, additional, and De Vugt, Marjolein E, additional
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- 2015
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47. Qualitative study on needs and wishes of early-stage dementia caregivers: the paradox between needing and accepting help
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Boots, Lizzy M. M., primary, Wolfs, Claire A. G., additional, Verhey, Frans R. J., additional, Kempen, Gertrudis I. J. M., additional, and de Vugt, Marjolein E., additional
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- 2015
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48. Optimizing the use of expert panel reference diagnoses in diagnostic studies of multidimensional syndromes
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Handels, Ron L H, primary, Wolfs, Claire A G, additional, Aalten, Pauline, additional, Bossuyt, Patrick M M, additional, Joore, Manuela A, additional, Leentjens, Albert F G, additional, Severens, Johan L, additional, and Verhey, Frans R J, additional
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- 2014
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49. The Diagnostic and Prognostic Value of Neuropsychological Assessment in Memory Clinic Patients.
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Jansen, Willemijn J., Handels, Ron L. H., Visser, Pieter Jelle, Aalten, Pauline, Bouwman, Femke, Claassen, Jurgen, van Domburg, Peter, Hoff, Erik, Hoogmoed, Jan, Leentjens, Albert F. G., Rikkert, Marcel Olde, Oleksik, Ania M., Smid, Machiel, Scheltens, Philip, Wolfs, Claire, Verhey, Frans, and Ramakers, Inez H. G. B.
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NEUROPSYCHOLOGICAL tests ,MEMORY disorders ,NEUROBEHAVIORAL disorders ,PROGNOSIS ,CLINICAL neuropsychology ,PATIENTS ,DIAGNOSIS ,ALZHEIMER'S disease ,COGNITION disorders ,COMPARATIVE studies ,DIGITAL image processing ,LONGITUDINAL method ,MAGNETIC resonance imaging ,RESEARCH methodology ,MEDICAL cooperation ,PSYCHOLOGICAL tests ,RESEARCH ,EVALUATION research ,DISEASE complications - Abstract
Background: Neuropsychological testing has long been embedded in daily clinical practice at memory clinics but the added value of a complete neuropsychological assessment (NPA) to standard clinical evaluation is unknown.Objective: To evaluate the added diagnostic and prognostic value of NPA to clinical evaluation only in memory clinic patients.Methods: In 221 memory clinic patients of a prospective cohort study, clinical experts diagnosed clinical syndrome (subjective cognitive impairment (SCI), mild cognitive impairment (MCI), or dementia) and etiology (Alzheimer's disease (AD) or no AD), and provided a prognosis of disease course (decline or no decline) before and after results of NPA were made available. The reference standard was a panel consensus based on all clinical information at baseline and up to 2 follow-up assessments.Results: With NPA data available, clinicians changed their initial syndromal diagnosis in 22% of patients, and the etiological diagnosis as well as the prognosis in 15%. This led to an increase in correctly classified cases of 18% for syndromal diagnosis, 5% for etiological diagnosis, and 1% for prognosis. NPA data resulted in the largest improvement in patients initially classified as SCI (syndrome: 93.3% (n = 14) correctly reclassified, etiology: net reclassification improvement [NRI] = 0.61, prognosis: NRI = 0.13) or MCI (syndrome: 89.3% (n = 23) correctly reclassified, etiology: NRI = 0.17, prognosis: NRI = 0.14), while there was no improvement in patients with dementia (syndrome: 100% (n = 1) correctly reclassified, etiology: NRI = -0.05, prognosis: NRI = -0.06). Overall, inclusion of NPA in the diagnostic process increased confidence in all diagnoses with 6-7%.Conclusion: Administration of a complete NPA after standard clinical evaluation has added value for diagnosing cognitive syndrome and its underlying etiology in patients regarded as non-demented based on the first clinical impression. [ABSTRACT FROM AUTHOR]- Published
- 2017
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50. Caregiver profiles in dementia related to quality of life, depression and perseverance time in the European Actifcare study: the importance of social health.
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Janssen, Eveline P.C.J., de Vugt, Marjolein, Köhler, Sebastian, Wolfs, Claire, Kerpershoek, Liselot, Handels, Ron L.H., Orrell, Martin, Woods, Bob, Jelley, Hannah, Stephan, Astrid, Bieber, Anja, Meyer, Gabriele, Engedal, Knut, Selbaek, Geir, Wimo, Anders, Irving, Kate, Hopper, Louise, Maria Marques, Gonçalves-Pereira, Manuel, and Portolani, Elisa
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QUALITY of life ,PSYCHOLOGY of caregivers ,CHI-squared test ,COMPARATIVE studies ,DEMENTIA ,MENTAL depression ,HEALTH status indicators ,LATENT structure analysis ,LOCUS of control ,LONGITUDINAL method ,NEUROPSYCHOLOGICAL tests ,CLASSIFICATION of mental disorders ,PROBABILITY theory ,PSYCHOLOGICAL tests ,RESEARCH funding ,SURVEYS ,T-test (Statistics) ,TIME ,MATHEMATICAL variables ,WELL-being ,VISUAL analog scale ,CROSS-sectional method ,DATA analysis software ,DESCRIPTIVE statistics - Abstract
Objectives:To identify caregiver profiles of persons with mild to moderate dementia and to investigate differences between identified caregiver profiles, using baseline data of the international prospective cohort study Actifcare. Methods:A latent class analysis was used to discover different caregiver profiles based on disease related characteristics of 453 persons with dementia and their 453 informal caregivers. These profiles were compared with regard to quality of life (CarerQoL score), depressive symptoms (HADS-D score) and perseverance time. Results:A 5-class model was identified, with the best Bayesian Information Criterion value, significant likelihood ratio test (p< 0.001), high entropy score (0.88) and substantive interpretability. The classes could be differentiated on two axes: (i) caregivers' age, relationship with persons with dementia, severity of dementia, and (ii) tendency towards stress and difficulty adapting to stress. Classes showed significant differences with all dependent variables, and were labelled ‘older low strain’, ‘older intermediate strain’, ‘older high strain’, ‘younger low strain’ and ‘younger high strain’. Conclusion:Differences exist between types of caregivers that explain variability in quality of life, depressive symptoms and perseverance time. Our findings may give direction for tailored interventions for caregivers of persons with dementia, which may improve social health and reduce health care costs. [ABSTRACT FROM PUBLISHER]
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- 2017
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