Depression and anxiety in family caregivers of persons with dementia

Horst, H.E. van der [Promotor]Scheltens, P. [Promotor]Hout, H.P.J. van [Copromotor]Marwijk, H.W.J. van [Copromotor

Measuring positive caregiving experiences in family caregivers of nursing home residents: a comparison of the Positive Experiences Scale, Gain in Alzheimer Care INstrument, and Positive Aspects of Caregiving questionnaire

Aim To compare the Positive Experiences Scale (PES), Gain in Alzheimer Care INstrument (GAIN) and Positive Aspects of Caregiving (PAC) in assessing positive caregiving experiences among caregivers of nursing home residents with dementia, and to explore which caregiver and care recipient characteristics relate to positive caregiving experiences.Methods A total of 63 caregivers (mean age 59.2 years; SD 11.8) of nursing home residents with dementia from four Dutch nursing homes participated in this cross-sectional observational study. Internal consistency, convergent validity and user-friendliness (i.e. perception of item relevance and comprehensibility, ease of use, missing items, and user preference) were examined using Cronbach's alpha's, correlation coefficients and descriptive statistics, respectively.Results The Cronbach's alpha for the GAIN, PAC and PES was 0.90, 0.94 and 0.68, respectively. The sum score of the PES showed a ceiling effect. Convergent validity was confirmed for all three instruments. The PES had the least missing data (mean number of missing items 0.2, SD 0.5) and was preferred by 40% of the caregivers, followed by the GAIN (mean number of missing items 0.6, SD 1.7, preferred by 11%). Positive caregiving experiences were negatively associated with educational level (range -0.28 to -0.35). Only the PES correlated positively with caregiver age (r = 0.25).Conclusions All three questionnaires can be used to assess positive caregiving experiences, but the GAIN might be the most suitable questionnaire for caregivers of nursing home residents with dementia. Further research is necessary to examine generalizability of the findings. Geriatr Gerontol Int 2021; center dot center dot: center dot center dot-center dot center dot.Geriatrics in primary carePublic Health and primary car

The relationship between guilt feelings, conflicts with staff and satisfaction with care in relatives of nursing home residents with dementia: a longitudinal analysis

Introduction: Family caregivers often experience guilt after nursing home placement. The aim of the present study was to describe family caregivers’ guilt over time and assess the impact of conflicts with staff and satisfaction with care on guilt. Method: Data of 222 family caregivers at three assessments during one-year follow-up were used. In addition to caregivers’ guilt and the variables conflicts with staff and satisfaction with the care, potential confounders were measured: sociodemographic data, clinical characteristics of the person with dementia, and caregiver burden. Linear mixed model analyses were performed to examine the longitudinal relationships between variables. Results: Guilt remained stable over time. Unadjusted models showed that conflicts with staff were positively associated with guilt (β = 0.11; p Geriatrics in primary carePublic Health and primary car

Cost-effectiveness of the Namaste care family program for nursing home residents with advanced dementia in comparison with usual care: a cluster-randomized controlled trial

Background: Dementia is a progressive disease that decreases quality of life of persons with dementia and is associated with high societal costs. The burden of caring for persons with dementia also decreases the quality of life of family caregivers. The objective of this study was to assess the societal cost-effectiveness of Namaste Care Family program in comparison with usual care in nursing home residents with advanced dementia.Methods: Nursing homes were randomized to either Namaste Care Family program or usual care. Outcome measures of the cluster-randomized trial in 231 residents included Quality of Life in Late-Stage Dementia (QUALID) and the Gain in Alzheimer Care Instrument (GAIN) for family caregivers over 12 months of follow-up. Health states were measured using the EQ-5D-3L questionnaire which were translated into utilities. QALYs were calculated by multiplying the amount of time a participant spent in a specific health state with the utility score associated with that health state. Healthcare utilization costs were estimated using standard unit costs, while intervention costs were estimated using a bottom-up approach. Missing cost and effect data were imputed using multiple imputation. Bootstrapped multilevel models were used after multiple imputation. Cost-effectiveness acceptability curves were estimated.Results: The Namaste Care Family program was more effective than usual care in terms of QUALID (- 0.062, 95%CI: - 0.40 to 0.28), QALY (0.0017, 95%CI: - 0.059 to 0.063) and GAIN (0.075, 95%CI: - 0.20 to 0.35). Total societal costs were lower for the Namaste Care Family program as compared to usual care (- 552 euro, 95%CI: - 2920 to 1903). However, these differences were not statistically significant. The probability of cost-effectiveness at a ceiling ratio of 0 euro/unit of effect extra was 0.70 for the QUALID, QALY and GAIN.Conclusions: The Namaste Care Family program is dominant over usual care and, thus, cost-effective, although statistical uncertainty was considerable.Public Health and primary careGeriatrics in primary car

Measuring positive caregiving experiences in caregivers of nursing home residents with dementia

Public Health and primary careGeriatrics in primary car

Measuring positive caregiving experiences in caregivers of nursing home residents with dementia

Public Health and primary careGeriatrics in primary car

Lessons learned from the development of a national registry on dementia care and support based on linked national health and administrative data

IntroductionThis paper provides insight into the development of the Dutch Dementia Care and Support Registry and the lessons that can be learned from it. The aim of this Registry was to contribute to quality improvement in dementia care and support.MethodsThis paper describes how the Registry was set up in four stages, reflecting the four FAIR principles: the selection of data sources (Findability); obtaining access to the selected data sources (Accessibility); data linkage (Interoperability); and the reuse of data (Reusability).ResultsThe linkage of 16 different data sources, including national routine health and administrative data appeared to be technically and legally feasible. The linked data in the Registry offers rich information about (the use of) care for persons with dementia across various healthcare settings, including but not limited to primary care, secondary care, long-term care and medication use, that cannot be obtained from single data sources.ConclusionsA key lesson learned is that in order to reuse the data for quality improvement in practice, it is essential to involve healthcare professionals in setting up the Registry and to guide them in the interpretation of the data

The perceived impact of the Namaste Care Family program on nursing home residents with dementia, staff, and family caregivers: a qualitative study.

Objective(s) To examine the perspectives of staff, and family caregivers (i.e., family, friends, and volunteers) on the impact of the Namaste Care Family program on all involved. The Namaste Care Family program is a structured program for people with advanced dementia based on a palliative care approach in which family caregivers provide daily sessions together with staff with the aim to increase residents’ quality of life. Methods In this descriptive qualitative study, we interviewed 12 family caregivers, and 31 staff members from 10 nursing homes. Data was analyzed thematically. Results A perceived impact of the program was identified for the residents, staff, and family caregivers. For residents, this included well-being, more engagement, enhanced interactions, changes in energy level, and weight gain. The impact on family caregivers included a more positive view of people with dementia, changes in family visits, mixed feelings during sessions, and mixed changes in relations with all involved. For staff, this included diverse work experiences, shift to more person-centered care (more time and attention for residents, and more awareness), and developing relationships with residents and colleagues. Conclusions The Namaste Care Family program was valued for its observed benefits and shift towards a person-centered care culture

The Perceived Impact of the Namaste Care Family Program on Nursing Home Residents with Dementia, Staff, and Family Caregivers: A Qualitative Study

Objective(s): To examine the perspectives of staff, and family caregivers (i.e., family, friends, and volunteers) on the impact of the Namaste Care Family program on all involved. The Namaste Care Family program is a structured program for people with advanced dementia based on a palliative care approach in which family caregivers provide daily sessions together with staff with the aim to increase residents' quality of life. Methods: In this descriptive qualitative study, we interviewed 12 family caregivers, and 31 staff members from 10 nursing homes. Data was analyzed thematically. Results: A perceived impact of the program was identified for the residents, staff, and family caregivers. For residents, this included well-being, more engagement, enhanced interactions, changes in energy level, and weight gain. The impact on family caregivers included a more positive view of people with dementia, changes in family visits, mixed feelings during sessions, and mixed changes in relations with all involved. For staff, this included diverse work experiences, shift to more person-centered care (more time and attention for residents, and more awareness), and developing relationships with residents and colleagues. Conclusions: The Namaste Care Family program was valued for its observed benefits and shift towards a person-centered care culture