Mixed methods to unravel mixed feelings

Funding Information: This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project ( https://www.jpnd.eu/ ). The Actifcare Consortium partners are Maastricht University (NL), Martin-Luther University Halle-Wittenberg (DE), Bangor University (UK), Nottingham University (UK), Karolinska Institutet (SE), Oslo University Hospital (NO), Dublin City University (IE), IRCCS Istituto Centro San Giovanni di Dio Fatebenefratelli, Brescia (IT), Nova Medical School/Faculdade de Ciências Médicas, Universidade Nova de Lisboa (PT) (FCT - JPND-HC/0001/2012). Maria J. Marques was supported by POPH/ESF funding (FCT-PD/BD/128011/2016). Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Research Council of Norway (Norway), The Swedish Research Council for Health, Working Life and Welfare (Sweden), EU Joint Programme - Neurodegenerative Disease Research (JPND) project, Fundação para a Ciência e a Tecnologia (FCT-PD/BD/128011/2016, FCTJP ND-HC/0001/2012), Health Research Board (Ireland), Ministry of Education and Research (Germany), The Netherlands Organization for Health Research and Development (The Netherlands), Ministry of Health (Italy), Economic and Social Research Council. Publisher Copyright: © The Author(s) 2023.Objective: Close relationships influence health and quality of life outcomes for people with dementia and their families. Yet, we know little on the role of different relationship domains with quantitative methods having proved to have limitations in this research field. We aimed to study these relationship domains over time, contrasting the views of people with dementia and their family carers, making use of both quantitative and qualitative approaches. Methods: A convergent mixed methods design was adopted, analysing longitudinal data (four time points over three years) from 66 dyads of Portuguese community-dwelling people with dementia and their primary carers, from the EU-Actifcare project sample. Quantitative assessments used sociodemographic and clinical variables, and Positive Affect Index scores, with descriptive and inferential analyses. Qualitative data, collected through individual and joint semi-structured interviews, were explored using thematic analysis. Results: Both quantitative and qualitative findings demonstrated that some domains of relationship quality are affected in different ways, with changes occurring at different stages. Some (e.g., ‘communication’) may even improve after initial decline. ‘Closeness’ was consistently altered over time, from carers’ perspectives, and played an important protective role regarding institutionalisation. Overall, changes in the relationship quality were perceived differently by people with dementia and their carers, and these divergent perspectives often led to tension. Qualitative data revealed that ‘mixed feelings’ (ambivalence) involve complex experiences, arguably more difficult to manage than negative feelings alone. Furthermore, perceived informal support, particularly from the extended family, and receiving formal services’ assistance, seemed to facilitate positive (re)appraisals of the relationship. Conclusions: A deeper understanding of relationship quality and its domains as dementia progresses may help tailoring interventions to tackle modifiable aspects of relationships, meeting the needs and cherishing the resources of dyads and families. Timely assessments could identify relationships at risk and need for support, including for alternative caring arrangements.publishersversionepub_ahead_of_prin

The quality of family relationships in dementia: Mixed methods to unravel mixed feelings

Objective: Close relationships influence health and quality of life outcomes for people with dementia and their families. Yet, we know little on the role of different relationship domains with quantitative methods having proved to have limitations in this research field. We aimed to study these relationship domains over time, contrasting the views of people with dementia and their family carers, making use of both quantitative and qualitative approaches.Methods: A convergent mixed methods design was adopted, analysing longitudinal data (four time points over three years) from 66 dyads of Portuguese community-dwelling people with dementia and their primary carers, from the EU-Actifcare project sample. Quantitative assessments used sociodemographic and clinical variables, and Positive Affect Index scores, with descriptive and inferential analyses. Qualitative data, collected through individual and joint semi-structured interviews, were explored using thematic analysis.Results: Both quantitative and qualitative findings demonstrated that some domains of relationship quality are affected in different ways, with changes occurring at different stages. Some (e.g., ‘communication’) may even improve after initial decline. ‘Closeness’ was consistently altered over time, from carers’ perspectives, and played an important protective role regarding institutionalisation. Overall, changes in the relationship quality were perceived differently by people with dementia and their carers, and these divergent perspectives often led to tension. Qualitative data revealed that ‘mixed feelings’ (ambivalence) involve complex experiences, arguably more difficult to manage than negative feelings alone. Furthermore, perceived informal support, particularly from the extended family, and receiving formal services’ assistance, seemed to facilitate positive (re)appraisals of the relationship.Conclusions: A deeper understanding of relationship quality and its domains as dementia progresses may help tailoring interventions to tackle modifiable aspects of relationships, meeting the needs and cherishing the resources of dyads and families. Timely assessments could identify relationships at risk and need for support, including for alternative caring arrangements

EmpRess: an eHealth implementation readiness checklist for dementia developed through an interview study of stakeholder needs

ObjectiveThis study aimed to create a tool to assess eHealth interventions for dementia by adapting an existing implementation readiness (ImpRess) checklist that assessed manualised interventions.MethodsIn 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.ResultsThe 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.ConclusionsThe 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

Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto

Objective: To provide a new perspective on integrated biomedical and psychosocial dementia research. Background: Dementia is being recognized as a multifactorial syndrome, but there is little interaction between biomedical and psychosocial approaches. A way to improve scientific knowledge is to seek better understanding of the mechanisms underlying the interaction between biomedical and psychosocial paradigms. One rationale for integrating biomedical and psychosocial research is the discordance between neuropathology and cognitive functioning. The concept of social health might bridge the two paradigms. It relates to how social resources influence the dynamic balance between capacities and limitations. Hypotheses: Social health can act as the driver for accessing cognitive reserve, in people with dementia through active facilitation and utilization of social and environmental resources. Thereby we link lifestyle social and opportunities to the brain reserve hypothesis. Manifesto: We provide a Manifesto on how to significantly move forward the dementia research agenda

Calendar 2015

Item does not contain fulltextBACKGROUND: Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs. METHODS: Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes. RESULTS: The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services. CONCLUSION: In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach

The Course of Quality of Life and Its Predictors in Nursing Home Residents With Young-Onset Dementia

OBJECTIVE: To explore the course of quality of life (QoL) and possible resident-related predictors associated with this course in institutionalized people with young-onset dementia (YOD). DESIGN: An observational longitudinal study. SETTING AND PARTICIPANTS: A total of 278 residents with YOD were recruited from 13 YOD special care units in the Netherlands. METHODS: Secondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. QoL was assessed with proxy ratings, using the Quality of Life in Dementia (QUALIDEM) questionnaire at 4 assessment points over 18 months. Predictors included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms, and psychotropic drug use at baseline. Multilevel modeling was used to adjust for the correlation of measurements within residents and clustering of residents within nursing homes. RESULTS: The total QUALIDEM score (range: 0-111) decreased over 18 months with a small change of 0.65 (95% confidence interval -1.27, -0.04) points per 6 months. An increase in several domains of QoL regarding care relationship, positive self-image, and feeling at home was seen over time, whereas a decline was observed in the subscales positive affect, social relations, and having something to do. Residents with higher levels of QoL and more advanced dementia at baseline showed a more progressive decline in QoL over time. Sensitivity analyses indicated a more progressive decline in QoL for residents who died during the follow-up. CONCLUSION AND IMPLICATIONS: This study shows that although overall QoL in nursing home residents with YOD was relatively stable over 18 months, there were multidirectional changes in the QoL subscales that could be clinically relevant. Higher levels of QoL and more advanced stages of dementia at baseline predicted a more progressive decline in QoL over time. More longitudinal studies are needed to verify factors influencing QoL in YOD

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

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

Research protocol of the NeedYD-study (Needs in Young onset Dementia): a prospective cohort study on the needs and course of early onset dementia

Contains fulltext : 89407.pdf (publisher's version ) (Open Access)BACKGROUND: Early onset dementia has serious consequences for patients and their family members. Although there has been growing attention for this patient group, health care services are still mainly targeted at the elderly. Specific knowledge of the needs of early onset dementia patients and their families is limited but necessary for the development of adequate health care services and specific guidelines. This research project is mainly targeted at delineating the course of early onset dementia, the functional characteristics and needs of early onset dementia patients and their caregivers, the risk factors for institutionalization and the interaction with the caring environment. METHODS/DESIGN: The NeedYD-study (Needs in Young Onset Dementia) is a longitudinal observational study investigating early onset dementia patients and their caregivers (n = 217). Assessments are performed every six months over two years and consist of interviews and questionnaires with patients and caregivers. The main outcomes are (1) the needs of patients and caregivers, as measured by the Camberwell Assessment of Needs for the Elderly (CANE) and (2) neuropsychiatric symptoms, as measured by the NeuroPsychiatric Inventory (NPI). Qualitative analyses will be performed in order to obtain more in-depth information on the experiences of EOD patients and their family members. The results of this study will be compared with comparable data on late onset dementia from a historical cohort. DISCUSSION: The study protocol of the NeedYD-study is presented here. To our knowledge, this study is the first prospective cohort study in this research area. Although some limitations exist, these do not outweigh the strong points of this study design