Lisa D. van Mierlo

Personalised caregiver support: effectiveness of psychosocial interventions in subgroups of caregivers of people with dementia

Insight into the characteristics of caregivers for whom psychosocial interventions are effective is important for care practice. Until now no systematic reviews were conducted into the effectiveness of psychosocial interventions for caregiver subgroups.

Memory problems in dementia: adaptation and coping strategies and psychosocial treatments

Memory problems are generally quite prominent in dementia and they have a significant impact on everyday functioning. Medication developed for Alzheimer’s disease, for example, acetylcholinesterase inhibitors, can slow down the increase of cognitive impairment for a while. In addition to pharmacotherapy, psychosocial treatment methods are also used, some of which have a positive effect on cognition, for example, cognitive rehabilitation, cognitive stimulation therapy and movement therapy. However, more research is needed. This article first describes the consequences of memory problems on the everyday life of people with dementia and summarizes research findings on how people with dementia experience and cope with their illness. We then discuss the most frequently applied psychosocial treatments for cognitive problems in dementia.

Comparing Dutch Case management care models for people with dementia and their caregivers: The design of the COMPAS study

BackgroundDementia care in the Netherlands is shifting from fragmented, ad hoc care to more coordinated and personalised care. Case management contributes to this shift. The linkage model and a combination of intensive case management and joint agency care models were selected based on their emerging prominence in the Netherlands. It is unclear if these different forms of case management are more effective than usual care in improving or preserving the functioning and well-being at the patient and caregiver level and at the societal cost. The objective of this article is to describe the design of a study comparing these two case management care models against usual care. Clinical and cost outcomes are investigated while care processes and the facilitators and barriers for implementation of these models are considered.DesignMixed methods include a prospective, observational, controlled, cohort study among persons with dementia and their primary informal caregiver in regions of the Netherlands with and without case management including a qualitative process evaluation. Inclusion criteria for the cohort study are: community-dwelling individuals with a dementia diagnosis who are not terminally-ill or anticipate admission to a nursing home within 6 months and with an informal caregiver who speaks fluent Dutch. Person with dementia-informal caregiver dyads are followed for two years. The primary outcome measure is the Neuropsychiatric Inventory for the people with dementia and the General Health Questionnaire for their caregivers. Secondary outcomes include: quality of life and needs assessment in both persons with dementia and caregivers, activity of daily living, competence of care, and number of crises. Costs are measured from a societal perspective using cost diaries. Process indicators measure the quality of care from the participant’s perspective. The qualitative study uses purposive sampling methods to ensure a wide variation of respondents. Semi-structured interviews with stakeholders based on the theoretical model of adaptive implementation are planned.DiscussionThis study provides relevant insights into care processes, description of two case management models along with clinical and economic data from persons with dementia and caregivers to clarify important differences in two case management care models compared to usual care.

Towards personalized integrated dementia care: a qualitative study into the implementation of different models of case management.

BackgroundThe aim of this process evaluation was to provide insight into facilitators and barriers to the delivery of community-based personalized dementia care of two different case management models, i.e. the linkage model and the combined intensive case management/joint agency model. These two emerging dementia care models differ considerably in the way they are organized and implemented. Insight into facilitators and barriers in the implementation of different models is needed to create future guidelines for successful implementation of case management in other regions.MethodsA qualitative case study design was used; semi-structured interviews were conducted with 22 stakeholders on the execution and continuation phases of the implementation process. The stakeholders represented a broad range of perspectives (i.e. project leaders, case managers, health insurers, municipalities).ResultsThe independence of the case management organization in the intensive model facilitated the implementation, whereas the presence of multiple competing case management providers in the linkage model impeded the implementation. Most impeding factors were found in the linkage model and were related to the organizational structure of the dementia care network and how partners collaborate with each other in this network.ConclusionsThe results of this process evaluation show that the intensive case management model is easier to implement as case managers in this model tend to be more able to provide quality of care, are less impeded by competitiveness of other care organizations and are more closely connected to the expert team than case managers in the linkage model.

The Cost- Effectiveness of Two Forms of Case Management Compared to a Control Group for Persons with Dementia and Their Informal Caregivers from a Societal Perspective

Objectives The objective of this article was to compare the costs and cost-effectiveness of the two most prominent types of case management in the Netherlands (intensive case management and linkage models) against no access to case management (control group) for people with already diagnosed dementia and their informal caregivers. Methods The economic evaluation was conducted from a societal perspective embedded within a two year prospective, observational, controlled, cohort study with 521 informal caregivers and community-dwelling persons with dementia. Case management provided within one care organization (intensive case management model, ICMM), case management where care was provided by different care organizations within one region (Linkage model, LM), and a group with no access to case management (control) were compared. The economic evaluation related incremental costs to incremental effects regarding neuropsychiatric symptoms (NPI), psychological health of the informal caregiver (GHQ-12), and quality adjusted life years (QALY) of the person with dementia and informal caregiver. Results Inverse-propensity-score-weighted models showed no significant differences in clinical or total cost outcomes between the three groups. Informal care costs were significantly lower in the ICMM group compared to both other groups. Day center costs were significantly lower in the ICMM group compared to the control group. For all outcomes, the probability that the ICMM was cost-effective in comparison with LM and the control group was larger than 0.97 at a threshold ratio of 0 €/incremental unit of effect. Conclusion This study provides preliminary evidence that the ICMM is cost-effective compared to the control group and the LM. However, the findings should be interpreted with caution since this study was not a randomized controlled trial.

Evaluation of DEM-DISC, customized e-advice on health and social support services for informal carers and case managers of people with dementia; a cluster randomized trial

BACKGROUND Few personalized e-interventions are available for informal and professional caregivers of people with dementia. The DEMentia Digital Interactive Social Chart (DEM-DISC) is an ICT tool to support customized disease management in dementia. The aim of this study was to improve and evaluate DEM-DISC, its user-friendliness and usefulness and to investigate the future implementation. METHODS A cluster randomized controlled trial (RCT) design was used with measurements at baseline, 6 and 12 months. A total of 73 informal caregivers of people with dementia, supported by 19 randomized case managers participated in the study. In the intervention group, both carers (n = 41) and case managers (n = 13) could access DEM-DISC during twelve months. The control group, 32 carers and 14 case managers, had no access to DEM-DISC. Semi-structured interviews were conducted with ten stakeholders. RESULTS Informal caregivers who used DEM-DISC for twelve months reported an increased sense of competence than controls. A subgroup of users who frequently accessed DEM-DISC reported more met needs after six months than controls. Overall informal caregivers and case managers judged DEM-DISC as easy to learn and user-friendly. CONCLUSIONS This study demonstrates that using DEM-DISC had a positive effect on the sense of competence and experienced (met) needs of informal carers. This shows the importance of user-friendly ICT solutions to assist carers in finding appropriate care services tailored to their specific situation and needs. For further implementation of DEM-DISC methods to keep the information updated is of great importance.

Screening for Mild Cognitive Impairment and Dementia with Automated, Anonymous Online and Telephone Cognitive Self-Tests

Background: Many older people worry about cognitive decline. Early cognitive screening in an anonymous and easily accessible manner may reassure older people who are unnecessarily worried about normal cognitive aging while it may also expedite help seeking in case of suspicious cognitive decline. Objective: To develop and validate online and telephone-based automated self-tests of cognitive function. Methods: We examined the feasibility and validity of the self-tests in a prospective study of 117 participants of whom 34 had subjective cognitive decline (SCD), 30 had mild cognitive impairment (MCI), and 53 had dementia. The ability of these self-tests to accurately distinguish MCI and dementia from SCD was examined with ROC curves. Convergent validity was examined by calculating rank correlations between the self-tests and neuropsychological tests. Results: Both the online and telephone cognitive self-tests were feasible, because the majority of participants (86% and 80%, respectively) were able to complete them. The online self-test had adequate diagnostic accuracy in the screening for MCI and dementia versus SCD with an Area under the Curve (AUC) of 0.86 (95% CI: 0.78–0.93). The AUC of the MMSE was 0.82 (95% CI: 0.74–0.89). By contrast, the telephone self-test had lower diagnostic accuracy (AUC = 0.75, 95% CI: 0.64–0.86). Both self-tests had good convergent validity as demonstrated by moderate to strong rank correlations with neuropsychological tests. Conclusion: We demonstrated good diagnostic accuracy and convergent validity for the online self-test of cognitive function. It is therefore a promising tool in the screening for MCI and dementia.

FACTORS INFLUENCING ADAPTIVE IMPLEMENTATION OF THE MEETING CENTRES SUPPORT PROGRAMME IN FOUR EUROPEAN COUNTRIES: RESULTS OF THE MEETINGDEM PROJECT

English care homes. We compared ratings and investigated whether staff, family carer and resident characteristics were associated with ratings of staff and family proxy QoL using multilevel modelling. Results: There was a significant difference between staff and family DEMQOL proxy mean scores (104 and 101 respectively), (Z 1⁄4 -7.15, p 1⁄40.00). The correlation between scores was low (0.35). Family proxy raters were more likely than staff to rate QoL as “Poor” (X2 1⁄4 55.91, p 1⁄4 0.00). Exploratory analysis looking at different factors associated with ratings will be presented. Conclusions: Staff and family proxy raters think differently about the QoL of somebody living with dementia in care homes. We need to consider carefully what we are measuring when QoL is rated via a proxy in a care home and who the proxy rater is. Investigating further the factors associated with different perspectives of QoL can inform our evaluation of existing interventions and inform the development of future interventions to improve QoL for people with dementia living in care homes.

Implementatie en (kosten-)effectiviteit van casemanagement voor mensen met dementie en hun mantelzorgers: resultaten van de COMPAS-studie

BACKGROUND Different forms of case management for dementia have emerged over the past few years. In the COMPAS study (Collaborative dementia care for patients and caregivers study), two prominent Dutch case management forms were studied: the linkage and the integrated care form. AIM OF STUDY Evaluation of the (cost)effectiveness of two dementia case management forms compared to usual care as well as factors that facilitated or impeded their implementation. METHODS A mixed methods design with a) a prospective, observational controlled cohort study with 2 years follow-up among 521 dyads of people with dementia and their primary informal caregiver with and without case management; b) interviews with 22 stakeholders on facilitating and impeding factors of the implementation and continuity of the two case management models. Outcome measures were severity and frequency of behavioural problems (NPI) for the person with dementia and mental health complaints (GHQ-12) for the informal caregiver, total met and unmet care needs (CANE) and quality adjusted life years (QALYs). RESULTS Outcomes showed a better quality of life of informal caregivers in the integrated model compared to the linkage model. Caregivers in the control group reported more care needs than those in both case management groups. The independence of the case management provider in the integrated model facilitated the implementation, while the rivalry between multiple providers in the linkage model impeded the implementation. The costs of care were lower in the linkage model (minus 22 %) and integrated care model (minus 33 %) compared to the control group. CONCLUSION The integrated care form was (very) cost-effective in comparison with the linkage form or no case management. The integrated care form is easy to implement.

Implementatie en (kosten-)effectiviteit van casemanagement voor mensen met dementie en hun mantelzorgers: resultaten van de COMPAS-studie@@@Implementation and (cost-)effectiveness of case management for people with dementia and their informal caregivers: results of the COMPAS study

BACKGROUND Different forms of case management for dementia have emerged over the past few years. In the COMPAS study (Collaborative dementia care for patients and caregivers study), two prominent Dutch case management forms were studied: the linkage and the integrated care form. AIM OF STUDY Evaluation of the (cost)effectiveness of two dementia case management forms compared to usual care as well as factors that facilitated or impeded their implementation. METHODS A mixed methods design with a) a prospective, observational controlled cohort study with 2 years follow-up among 521 dyads of people with dementia and their primary informal caregiver with and without case management; b) interviews with 22 stakeholders on facilitating and impeding factors of the implementation and continuity of the two case management models. Outcome measures were severity and frequency of behavioural problems (NPI) for the person with dementia and mental health complaints (GHQ-12) for the informal caregiver, total met and unmet care needs (CANE) and quality adjusted life years (QALYs). RESULTS Outcomes showed a better quality of life of informal caregivers in the integrated model compared to the linkage model. Caregivers in the control group reported more care needs than those in both case management groups. The independence of the case management provider in the integrated model facilitated the implementation, while the rivalry between multiple providers in the linkage model impeded the implementation. The costs of care were lower in the linkage model (minus 22 %) and integrated care model (minus 33 %) compared to the control group. CONCLUSION The integrated care form was (very) cost-effective in comparison with the linkage form or no case management. The integrated care form is easy to implement.