Factors of resilience in informal caregivers of people with dementia from integrative international data analysis

Background/Aims: Although caring for a person with dementia can be stressful, some caregivers appear to experience few negative consequences to their well-being. This study aimed to examine what proportion of caregivers demonstrates resilience under different challenging circumstances and to identify factors related to their resilience. Methods: Baseline data from 4 studies from the Netherlands and UK among informal caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as high levels of psychological well-being despite different types of high caregiving demands. Multivariate regression analyses identified factors significantly related to caregiver resilience. Results: The integrated data set included 15 harmonized variables with data from 1,048 caregivers facing a high care demand. The prevalence of resilience varied between 35 and 43%, depending on the demand for high care. Being a male caregiver, caring for a female, living apart from your relative, and low caregiver burden were positively related to caregiver resilience. Conclusion: Caregivers have the capacity to demonstrate resilience despite significant challenges. This study demonstrates how harmonization of data from multiple existing studies can be used to increase power and explore the consistency of findings. This contributes to a better understanding of which factors are likely to facilitate caregiver resilience and offers insights for developing services

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

<p>Abstract</p> <p>Background</p> <p>Dementia 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.</p> <p>Design</p> <p>Mixed 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.</p> <p>Discussion</p> <p>This 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.</p

Evaluation of the 'Unforgettable' art programme by people with dementia and their care-givers

Art programmes have been shown to contribute to the quality of life of people with dementia. To understand how people with dementia benefit from art programmes it is important to evaluate them. 'Unforgettable' is an interactive museum programme for people with dementia and their care-givers in the Netherlands. This study examined how it is experienced and appreciated by its users. It also investigated whether the user experience and appreciation are linked to their specific background characteristics. In a single-group design, we used a 'take-home' survey to collect the participants' background characteristics and their experience and appreciation of the programme. A before and after intervention measurement took place, using a smiley face scale, to measure the change in mood of participants. Participants evaluated the programme very positively. Social interaction proved a key factor in their appreciation. The mood of the persons with dementia (N = 95) and care-givers (N = 104) improved after participation in the 'Unforgettable' programme. The results of this evaluation may contribute to the quality of art programmes in museums

Effects of Assistive Home Technology on quality of life and falls of people with dementia and job satisfaction of caregivers; results from a pilot randomized controlled trial

Objectives: Determine the effects of the implementation of Assistive Home Technology (AHT) in group homes on the quality of life (QoL) of people with dementia and on job satisfaction of caregivers. Method: Pilot randomized controlled trial in nine in-patient care group homes (group homes with vs. without AHT). Participants were 54 people with dementia and 25 professionals. Outcome measurements were QoL, fall incidents, needs, use of restraints, job satisfaction, workload, and general health. Results: Living in a group home with AHT had a positive effect on four QoL domains: ‘social isolation’, ‘having things to do’, ‘esthetics’, and ‘quality of life appreciation’. No effects were found on 12 other QoL domains. Fall incidents during bathroom visits were significantly reduced by the application of AHT. During this implementation phase, in the AHT group home, a moderate negative effect was found on caregiver’s appreciation of work circumstances. No effects on other outcome measures were found. Conclusion: Positive effects were found on aspects of QoL and fall incidents in the bathroom. The lower caregiver appreciation of work circumstances in the AHT group confirms the importance of intensive support and guidance of personnel during the implementation of AHT

Cost-effectiveness of exergaming compared to regular day-care activities in dementia: Results of a randomised controlled trial in The Netherlands

The growing number of people living with dementia will result in increased costs of dementia worldwide. The e-Health intervention ‘Exergaming’ may improve health and quality of life of people with dementia, but the cost-effectiveness is unknown. We assessed the cost-effectiveness of exergaming compared to regular activities from a societal perspective in day-care centres (DCC) for people with dementia and their informal caregivers (IC) alongside a cluster randomised controlled trial. We included 112 dyads (person with dementia and IC) from 20 psychogeriatric DCCs (11 exergaming, 9 control) across the Netherlands. Exergaming consisted of interactive cycling at least twice a week for 6 months. Measurements were conducted at baseline (T0), after 3 (T1) and 6 (T2) months. Primary outcomes were minutes of physical activity, mobility of the participants with dementia (Short Physical Performances Battery, SPPB), and Quality-Adjusted Life-Years (QALYs) of participants with dementia and ICs. ICs filled out cost diaries to measure healthcare and informal care utilisation during the study. There were no statistically significant differences in outcomes or costs between the groups at the level of participants with dementia, the ICs or the dyad. With regard to QALYs and SPPB, the probability that exergaming is cost-effective compared to control was low for all possible willingness-to-pay (WTP) thresholds. However, for physical activity at WTP thresholds of 0, 50 and 250 Euros per additional minute of physical activity, the probability of cost-effectiveness is 0.46, 0.84 and 0.87, respectively. Exergaming in DCC was not cost-effective compared to usual activities. However, considering the small sample size and the large number of missing observations, findings should be interpreted with caution. Future studies with larger samples are recommended to obtain definitive answers on the cost-effectiveness of exergaming. This trial was registered in the Netherlands Trial Register (NTR5537/NL5420)

The use of the waiting list in a fair selection of patients for nursing home care

When health care resources are scarce, waiting lists may be used as a distribution measure in order to enhance the fair allocation of resources through selection of patients. In this study, the structure and use of a waiting list for a fair selection of patients for nursing home admission was studied. Qualitative research took place in two regions in the Netherlands, where scarcity exists in nursing home care. Selection meetings were attended and 39 health care workers were interviewed. Not only did waiting list criteria like urgency and chronology determine the final selection decision, but also efficiency and quality of care considerations (patients' preferences for particular nursing homes and nursing homes' considerations of matching the unit and work load). These considerations, their relative importance, and the resulting need for enforcement of the decision-making procedures, should be part of the discussion of patient selection. This acknowledges the complexity of the selection of patients