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Introduction: Primary healthcare professionals will increasingly be required to manage and optimise their treatment for patients with dementia. With DementiaNet, we aim to reduce the burden of dementia on healthcare services and society through implementation and facilitation of integrated network-based care with increased dementia expertise. DementiaNet is designed as a stepwise approach including clinical leadership, quality improvement cycles and interprofessional training, which are tailor-made to the local context. For example, the composition of the network and improvement goals are tailored to the local context and availability. Here, we describe the linked evaluation study which aims to provide insight in effectiveness, process and mechanism of the DementiaNet approach through an innovative evaluation design., Methods and Analysis: We designed a longitudinal, mixed methods, multiple case study. Study population consists of two levels: (i) local DementiaNet networks of primary care professionals and (ii) patients and informal caregivers who receive care from these networks. At the start and after 12 and 24 months, quantitative data are collected for each network on: level of network maturity, quality of care indicators and outcomes reported by informal caregivers of dementia patients. We assess changes in networks over time and the association with quality of care and informal caregiver-reported outcomes. Throughout the study, logs about each network are registered. Additionally, semi-structured interviews with network members and informal caregivers will provide insight in experiences and opinions regarding effects and mechanisms through which changes in quantitative outcomes are effectuated. Rich narratives will be constructed about the development of the local networks using collected data., Ethics and Dissemination: The study protocol was reviewed by the local medical ethics committee; formal judgement was not required (protocol number: 2015-2053). The findings of this study will be disseminated through peer-reviewed publications, conference presentations and presentations for healthcare professionals where appropriate., Competing Interests: Competing interests: None declared., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Background: Informal care is essential for many people with dementia (PwD), but it often results in a considerable burden for the caregiver. The perseverance time instrument integrates the aspect of perceived burden with the caregiver's capacity to cope with the burden, in contrast to most available instruments, which measure solely the burden of caregiving. The aim of this study was to extend insight into psychometric properties of the perseverance time instrument, specifically the construct validity, responsiveness, and predictive validity, within the population of informal caregivers for PwD., Methods: Data from two studies among informal caregivers of community-dwelling PwD in the Netherlands were used. The first study included 198 caregivers from a single region in the Netherlands and lasted 1 year. The second was a cross-sectional nationwide study with 166 caregivers for PwD. Questionnaires of both studies included questions regarding demographics and informal care, perseverance time, and other informal caregiver outcomes (Caregiver Strain Index, Self-rated Burden scale, Care-related Quality of Life instrument, and visual analogue scale health scores). Construct validity and responsiveness were assessed using a hypothesis-testing approach. The predictive validity of demographic characteristics and perseverance time for living situation after 1 year (living at home, institutionalized, or deceased) was assessed with multivariable multinomial regression., Results: All but one of the hypotheses regarding construct validity were met. Three of five hypotheses regarding responsiveness were met. Perseverance time scores at baseline were associated with living situation after 1 year (p < 0.01), unlike age, sex, and relationship with PwD. Perseverance time strongly increased predictive power for living situation after 1 year (c-index between 0.671 and 0.775) in addition to demographic characteristics., Conclusions: This study supports previous findings regarding the construct validity of the perseverance time instrument and adds new evidence of good construct validity, responsiveness, and predictive validity. The predictive power of perseverance time scores for living situation exceeds the predictive power of other burden measures and indicates informal care as an important factor for maintaining the patient at home.

Objectives: To assess the feasibility and validity of the International Dementia Alliance (IDEAL) instrument for Informal Caregivers (IDEAL-IC), which is based on the IDEAL instrument for professionals (IDEAL-P), for staging individuals with dementia., Design: Cross-sectional., Setting: Memory clinic of a university hospital., Participants: Informal caregivers of 73 community-dwelling elderly adults referred to a memory clinic and six geriatric registrars., Measurements: Caregivers completed the IDEAL-IC; physicians completed the original IDEAL-P and the Clinical Dementia Rating sum of boxes (CDR-SB). Missing items and floor and ceiling effects were reviewed to assess feasibility. To test construct validity, a priori hypotheses were defined for expected correlations between IDEAL-IC, IDEAL-P, and CDR-SB scores., Results: Seventy-three IDEAL-IC instruments were completed, 86% of which had no missing items. Three percent of all 730 individual items were missing. No floor or ceiling effects were detected. CDR scores were 0 7%, 0.5 in 33%, 1 in 27%, 2 in 10%, and unknown in 23%. IDEAL-IC scores correlated highly with IDEAL-P scores (correlation coefficient (r) = 0.70) and with CDR-SB scores (r = 0.65) as expected; the difference between these two correlations was smaller than expected. Agreement between IDEAL-IC and IDEAL-P scores was 34% within a range of 1 point difference on 36-point scales, 57% within a range of two points, and 81% within a range of five points. Correlation between IDEAL-P and CDR-SB was very high (r = 0.85)., Conclusion: Results of this study indicate good feasibility and high validity of staging dementia by informal caregivers using the IDEAL-IC., (© 2016, Copyright the Authors Journal compilation © 2016, The American Geriatrics Society.)