Digital resilience monitoring of informal caregivers of persons with dementia for early detection of overburden: Development and pilot testing.

OBJECTIVES: Informal caregiving is becoming increasingly important in dementia care, but causes a considerable burden on caregivers which impacts their wellbeing. We aimed to develop and pilot test a digital monitoring tool (REsilience Monitor for INformal caregivers in Dementia [REMIND]) for wellbeing and resilience of informal caregivers to provide timely support and thereby prevent their overburden and eventually crises admissions of persons with dementia. METHODS: A human-centered design method based on co-creation with informal caregivers and professionals was used to design REMIND. During co-creation meetings and in-between sprint sessions, a point of focus was formulated, and a prototype was created. Case manager-caregiver duos pilot-tested REMIND for 3 months. Semi-structured interviews were conducted to determine usability and acceptability. Thematic analysis was applied to the transcripts. RESULTS: Informal caregivers and professionals with varying backgrounds participated in three co-creation meetings. Defined point of focus was to develop a tool that is able to provide insight into the experienced burden of informal caregivers. The REMIND prototype consisted of weekly questions about wellbeing and resilience for informal caregivers and a dashboard with answers for case managers. Eight case managers and 13 informal caregivers considered REMIND easy-to-use. Informal caregivers mentioned that REMIND stimulated self-reflection. Case managers appreciated the tool's ability to gain insight in the actual wellbeing of informal caregivers. CONCLUSIONS: The REMIND tool developed in co-creation with end-users potentially increases insight in actual wellbeing of informal caregivers for both caregivers and case managers. A long-term (controlled) follow-up study is needed to evaluate REMIND's impact on caregiver burden and crisis admissions.

DementiaNet facilitates a sustainable transition toward integrated primary dementia care: A long-term evaluation.

INTRODUCTION: Care integration is a promising strategy to achieve sustainable health-care systems. With DementiaNet, a 2-year program, we facilitated collaboration between primary health-care professionals. We studied changes in primary dementia care integration during and after DementiaNet participation. METHODS: A longitudinal follow-up study was performed. Networks started between 2015 and 2020; follow-up ended in 2021. Quantitative and quantitative data were collected annually to assess quality of care, network collaboration, and number of crisis admissions. Growth modeling was used to identify changes over time. RESULTS: Thirty-five primary care networks participated. Network collaboration and quality of care of newly formed networks increased significantly in the first 2 years (respectively, 0.35/year, P < .001; 0.29/year, P < .001) and thereafter stabilized. CONCLUSION: Primary care networks improved their collaboration and quality of care during DementiaNet participation, which persisted after the program ended. This indicates that DementiaNet facilitated a sustainable transition toward integrated primary dementia care.

Implementation of interprofessional digital communication tools in primary care for frail older adults: An interview study.

Communication and coordination between primary healthcare professionals and informal caregivers involved in the care for frail older adults is suboptimal and could benefit from interprofessional digital communication tools. Implementation in daily practice however frequently fails. We aim to identify generic barriers and facilitators experienced by healthcare professionals and informal caregivers during implementation of interprofessional communication tools to improve their long-term use. Qualitative content analysis using individual semi-structured interviews was used for evaluating three different digital communication tools used by interprofessional primary care networks for frail older adults by 28 professionals and 10 caregivers. After transcription and open coding, categories and themes were identified. Barriers and facilitators were related to: tool characteristics, context of use, involvement of professionals and caregivers. The tool improved availability, approachability and users' involvement. The large number of digital systems professionals simultaneously use, and different work agreements hampered tool use. The tools facilitated care coordination, and professionals declared to be better informed about patients' current situations. Overall, interprofessional digital communication tools can facilitate communication in networks for primary elderly care. However, integration between digital systems is needed to reduce the number of tools. Organizations and policy makers have an important role in realizing the tools' long-term use.

Effects of DementiaNet's Community Care Network Approach on Admission Rates and Healthcare Costs: A Longitudinal Cohort Analysis.

BACKGROUND: People with dementia are increasingly living at home, relying on primary care providers for most healthcare needs. Suboptimal collaboration and communication between providers could cause inefficiencies and worse patient outcomes. Innovative strategies are needed to address this growing disease burden and rising healthcare costs. The DementiaNet programme, a community care network approach targeted at patients with dementia in the Netherlands, has been shown to improve patient's quality of care. However, very little is known about the impact of DementiaNet on admission risks and healthcare costs. This study addresses this knowledge gap. METHODS: A longitudinal cohort analysis was performed, using medical and long-term care claims data from 38 525 patients between 2015-2019. The primary outcomes were risk of hospital admission and annual total healthcare costs. Mixed-model regression analyses were used to identify changes in outcomes. RESULTS: Patients who received care from a DementiaNet community care network showed a general trend in lower risk of admission for all types of admissions studied (ie, hospital, emergency ward, intensive care, crisis, and nursing home). Also, the intervention group showed a significant reduction of 12% in nursing days (relative risk [RR] 0.88; 95% CI: 0.77- 0.96). No significant differences were found for total healthcare costs. However, we found effects in two sub-elements of total healthcare costs, being a decrease of 19.7% (95% CI: 7.7%-30.2%) in annual hospital costs and an increase of 10.2% (95% CI: 2.3%-18.6%) in annual primary care costs. CONCLUSION: Our study indicates that DementiaNet's community care network approach may reduce admission risks for patients with dementia over a long-term period of five years. This is accompanied by a decrease in nursing days and savings in hospital care that exceed increased primary care costs. This improvement in integrated dementia care supports wider scale implementation and evaluation of these networks.

Care Integration in Primary Dementia Care Networks: A Longitudinal Mixed-Methods Study.

INTRODUCTION: Currently, care integration for community-dwelling persons with dementia is poor and knowledge on how to effectively facilitate development of integrated dementia care is lacking. The DementiaNet program aims to overcome this with a focus on interprofessional collaboration. The objective of this study is to investigate how care integration in interprofessional primary dementia care networks matures and to identify factors associated with (un)successfully maturation. THEORY AND METHODS: A longitudinal mixed-methods study, including 17 primary care networks participating in the DementiaNet study, was performed. Semi-structured interviews based on the Rainbow Model of Integrated Care were conducted at start, at 12- and 24 months. Network maturity scores (range 1-4) were derived from the interviews and qualitative data was used to explain the observed patterns. RESULTS: Networks consisted on average of 9 professionals (range 4-22) covering medical, care and social disciplines. Network maturity yearly increased with 0.29 (95%-CI: 0.20-0.38). Important factors for improvement included getting to know each other's expertise, having a capable network leader(s), stable network composition and participation of a general practitioner. CONCLUSIONS: The DementiaNet approach enables a transition towards more mature networks. Identified success factors provide better understanding of how network maturity can be achieved and gives guidance to future care integration strategies.

Understanding Nutritional Problems of Metastatic Breast Cancer Patients: Opportunities for Supportive Care Through eHealth.

BACKGROUND: Metastatic breast cancer patients are now living longer but cope with potential symptoms of metastatic disease and prolonged cancer treatment. Nutrition can play a vital role in managing these sequelae, and eHealth tools are emerging as promising delivery options for nutrition interventions. OBJECTIVE: To qualitatively assess nutritional problems and concerns of women with metastatic breast cancer and to explore how to address these problems within an existing eHealth platform. METHODS: Semistructured interviews were conducted with 21 women with metastatic breast cancer participating in an ongoing eHealth study. Interviews were audiotaped, transcribed verbatim, and analyzed using a team-based content analysis approach. RESULTS: Most respondents reported currently or previously experiencing nutritional problems due to adverse effects of cancer treatment or the disease itself; these were rarely addressed during routine clinical care. Five major themes emerged: (1) knowledge about nutrition, (2) nutrition information-seeking, (3) social aspects of nutrition, (4) nutrition interest, and (5) how to address nutrition with an eHealth platform. The respondents reported diverse experiences and perspectives regarding nutrition and diet in the context of metastatic breast cancer within each theme. CONCLUSION: Findings indicate the importance of providing women with metastatic breast cancer with information about nutrition that is tailored to their specific disease, as these patients report both nutritional problems and uncertainty regarding nutritional strategies. IMPLICATIONS FOR PRACTICE: These findings are a first step toward designing supportive care interventions that could fill the gap related to nutritional concerns not addressed during routine clinical care.

Development and pilot testing of quality improvement indicators for integrated primary dementia care.

BACKGROUND: Implementation of integrated primary care is considered an important strategy to overcome fragmentation and improve quality of dementia care. However, current quality indicator (QI) sets, to assess and improve quality of care, do not address the interprofessional context. The aim of this research was to construct a feasible and content-wise valid minimum dataset (MDS) to measure the quality of integrated primary dementia care. METHODS: A modified Delphi method in four rounds was performed. Stakeholders (n=15) (1) developed a preliminary QI set and (2) assessed relevance and feasibility of QIs via a survey (n=84); thereafter, (3) results were discussed for content validity during a stakeholder and (4) expert consensus meeting (n=8 and n=7, respectively). The stakeholders were professionals, informal caregivers, and care organisation managers or policy officers; the experts were professionals and researchers. The final set was pilot-tested for feasibility by multidisciplinary dementia care networks. RESULTS: The preliminary set consisted of 40 QIs. In the survey, mean scores for relevance ranged from 5.8 (SD=2.7) to 8.5 (SD=0.7) on a 9-point Likert scale, and 25% of all QIs were considered feasible to collect. Consensus panels reduced the set to 15 QIs to be used for pilot testing: 5 quality of care, 3 well-being, 4 network-based care, and 3 cost-efficiency QIs. During pilot testing, all QIs were fully completed, except for well-being QIs. CONCLUSION: A valid and feasible MDS of QIs for primary dementia care was developed, containing innovative QIs on well-being, network-based care and cost-efficiency, in addition to quality of care QIs. Application of the MDS may contribute to development and implementation of integrated care service delivery for primary dementia care.