Objectives: To evaluate the feasibility, facilitators of and barriers to delivering Namaste Care by volunteers and family carers to community-dwelling people with dementia, and to map family carers... Show moreObjectives: To evaluate the feasibility, facilitators of and barriers to delivering Namaste Care by volunteers and family carers to community-dwelling people with dementia, and to map family carers and volunteers' experiences with the programme. Design: Qualitative interview study with two phases: (1) preparation phase; (2) pilot phase. Setting: Private residences of community-dwelling people with dementia in the UK and the Netherlands. Participants: Family carers and volunteers of community-dwelling people with dementia (phase 1: 36 Dutch interviews, phase 2: 9 Dutch and 16 UK interviews). Intervention: Namaste Care is a multicomponent psychosocial programme, originally developed for people with dementia residing in long-term care facilities. Meaningful activities were offered by carers and volunteers. Each person with dementia was offered 10 one-hour sessions. Results: Phase 1: Namaste Care was deemed feasible for community-dwelling people with dementia and no major adaptations to the programme were considered necessary. Phase 2: perceived effects of Namaste Care on people with dementia included improved mood and increased interaction. The programme appeared enriching for both family carers and volunteers, providing joy, respite from care and new insights for coping with challenging behaviour. A flexible attitude of the Namaste provider facilitated its delivery. High caregiver burden and a strained relationship between the family carer and person with dementia were considered barriers. Experiences of family carers and volunteers with Namaste Care were very positive (mean satisfaction rating: 8.7 out of 10, SD=0.9, range 7-10). Conclusion: We recommend offering Namaste Care delivered by volunteers, preferably multiple sessions per week of 1.5-2 hours to optimise quality of life of community-dwelling people with dementia. Working with well-matched, flexible Namaste providers is pivotal. Family involvement should be encouraged, although the extent should be adapted depending on preference, caregiver burden and the relationship between the family carer and the person with dementia. Show less
Smaling, H.J.A.; Francke, A.L.; Achterberg, W.P.; Joling, K.J.; Steen, J.T. van der 2022
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... Show moreObjective(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. Show less
BackgroundMany complaints in medicine and in advanced illnesses are about communication. Little is known about which specific communications harm. This study explored the perspectives of patients... Show moreBackgroundMany complaints in medicine and in advanced illnesses are about communication. Little is known about which specific communications harm. This study explored the perspectives of patients with advanced cancer about potentially harmful communication behaviors by oncologists and helpful alternatives.MethodsAn online survey design was used that was based on literature scoping and patient/clinician/researcher input. Patients with advanced cancer (n = 74) reflected on the potential harmfulness of 19 communication situations. They were asked whether they perceived the situation as one in which communication could be harmful (yes/no). If they answered “yes,” they were asked whether they perceived the examples as harmful (yes/no) or helpful (yes/no) and to provide open comments. Results were analyzed quantitatively and qualitatively (content analysis).ResultsCommunication regarding information provision, prognosis discussion, decision-making, and empathy could be unnecessarily potentially harmful, and this occurred in various ways, such as making vague promises instead of concrete ones (92%), being too directive in decision-making (qualitative), and not listening to the patient (88%). Not all patients considered other situations potentially harmful (eg, introducing the option of refraining from anticancer therapy [49%] and giving too much [prognostic] information [60%]). Exploring each individual patients' needs/preferences seemed to be a precondition for helpful communication.ConclusionsThis article provides patient perspectives on oncologists' unnecessarily potentially harmful communication behaviors and offers practical tools to improve communication in advanced cancer care. Both preventable pitfalls and delicate challenges requiring an individualized approach, where exploration might help, are described. Although providing difficult and unwelcome news is a core task for clinicians, this study might help them to do so while preventing potentially unnecessary harm. Show less
Westendorp, J.; Evers, A.W.M.; Stouthard, J.; Budding, J.; Wall, E. van der; Plum, N.; ... ; Vliet, L.M. van 2021
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... Show moreIntroduction: 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 < 0.001; 95% CI: 0.06 to 0.16) and satisfaction with care showed a negative association with guilt (β = 0.10; p< 0.05; 95% CI: 0.18 to 0.01). After adjusting for the confounders, only the positive association of guilt with conflicts with staff was similar as in the unadjusted analysis (β = 0.11; p < 0.001; 95% CI: 0.05 to 0.16), whereas satisfaction with care was not significantly associated with guilt in the adjusted analyses (β = 0.07; p = 0.10; 95% CI: 0.16 to 0.01). Discussion: More conflicts with staff are associated with stronger guilt feelings. Guilt feelings are experienced by caregivers even after the admission of the person with dementia, and they remain stable over time. Further studies should focus on how to address guilt in family caregivers of people with dementia living in nursing homes. Show less
Gallego-Alberto, L.; Smaling, H.J.A.; Francke, A.L.; Brug, T. van de; Steen, J.T. van der 2021
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... Show moreIntroduction 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 (beta = 0.11; p < 0.001; 95% CI: 0.06 to 0.16) and satisfaction with care showed a negative association with guilt (beta = -0.10; p< 0.05; 95% CI: -0.18 to -0.01). After adjusting for the confounders, only the positive association of guilt with conflicts with staff was similar as in the unadjusted analysis (beta = 0.11; p < 0.001; 95% CI: 0.05 to 0.16), whereas satisfaction with care was not significantly associated with guilt in the adjusted analyses (beta = -0.07; p = 0.10; 95% CI: -0.16 to 0.01). Discussion More conflicts with staff are associated with stronger guilt feelings. Guilt feelings are experienced by caregivers even after the admission of the person with dementia, and they remain stable over time. Further studies should focus on how to address guilt in family caregivers of people with dementia living in nursing homes. Show less
Smaling, H.J.A.; Joling, K.J.; Achterberg, W.P.; Francke, A.L.; Steen, J.T. van der 2021
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... Show moreAim 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. Show less
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... Show moreBackground: 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. Show less
Vliet, L.M. van; Francke, A.L.; Meijers, M.C.; Westendorp, J.; Hoffstädt, H.; Evers, A.W.M.; ... ; Dulmen, S. van 2019
Introduction Quality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which... Show moreIntroduction Quality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which results in visits that are perceived as stressful and not very meaningful. Few psychosocial interventions are specifically developed for people with advanced dementia, and actively involve family caregivers or volunteers. Also, interventions usually stop when it becomes difficult for people to participate. The Namaste Care Family programme aims to increase the quality of life of people with advanced dementia, and improve family caregiving experiences through connecting to people and making them comfortable.Methods and analysis Our study will evaluate the effects of the Namaste Care Family programme on quality of life of people with advanced dementia living in nursing homes and family caregiving experiences using a cluster-randomised controlled trial. Longitudinal analyses will be performed taking into account clustering at the nursing home level. Both a cost-effectiveness and a cost-utility analysis from a societal perspective will be performed. We will modify the Namaste Care Family programme to increase family and volunteer involvement in ongoing and end-of-life care. Data collection involves assessments by family caregivers, nursing staff and elderly care physicians using questionnaires, and observations by the researchers at baseline and multiple times over 12 months. The last questionnaire will be sent up to month 24 after the death of the person with dementia. During semistructured interviews, the feasibility, accessibility and sustainability of the Namaste Care Family programme will be assessed.Ethics and dissemination The study protocol is approved by the Medical Ethics Review Committee of the VU University Medical Center in Amsterdam (protocol no. 2016.399) and registered with the Nederlands Trial Register (NTR5692). The findings will be disseminated via publications in peer-reviewed journals, conference presentations and presentations for healthcare professionals where appropriate.Trial registration number NTR5692. Show less
BACKGROUND: Pain in nursing home residents with advanced dementia remains a major challenge; it is difficult to detect and may be expressed as challenging behavior. STA OP! aims to identify... Show moreBACKGROUND: Pain in nursing home residents with advanced dementia remains a major challenge; it is difficult to detect and may be expressed as challenging behavior. STA OP! aims to identify physical and other needs as causes of behavioral changes and uses a stepwise approach for psychosocial and pharmacological management which was effective in improving challenging behavior.AIM: To assess whether implementation of the stepwise multidisciplinary intervention also reduces pain and improves pain management.DESIGN: In a cluster randomized controlled trial (Netherlands National Trial Register NTR1967), healthcare professionals of intervention units received the stepwise training, while training of the control group focused on knowledge and skills without the stepwise component. Observed and estimated pain was assessed at baseline and at 3 and 6 months post-intervention. Logistic generalized estimating equations were used to test treatment and time effects.SETTING/PARTICIPANTS: A total of 21 clusters (single nursing home units) in 12 Dutch nursing homes included 288 residents with advanced dementia (Global Deterioration Scale score 5, 6, or 7): 148 in the intervention and 140 in the control condition.RESULTS: The multilevel modeling showed an overall effect of the intervention on observed pain but not on estimated pain; Pain Assessment Checklist for Seniors with Limited Ability to Communicate-Dutch version, mean difference: -1.21 points (95% confidence interval: -2.35 to -0.06); Minimum Dataset of the Resident Assessment Instrument pain scale, mean difference: -0.01 points (95% confidence interval: -0.36 to 0.35). Opioid use increased (odds ratio = 3.08; 95% confidence interval: 1.08-8.74); paracetamol use did not (odds ratio = 1.38; 95% confidence interval: 0.71-2.68).CONCLUSION: STA OP! was found to decrease "observed" pain but not estimated pain. Observing pain-related behavior might help improve pain management in dementia.KEYWORDS: Pain; dementia; nursing homes; pain management; randomized controlled trial Show less
A multicenter prospective randomized clinical trial was undertaken to investigate the effectiveness of the Australian Medical Sheepskin (AMS) in the prevention of sacral pressure ulcers in somatic... Show moreA multicenter prospective randomized clinical trial was undertaken to investigate the effectiveness of the Australian Medical Sheepskin (AMS) in the prevention of sacral pressure ulcers in somatic nursing home patients. Patients were randomized at admission and were then followed daily for 30 days. The experimental group received usual care plus an AMS as a layer on the mattress within ultimately 48 hours after admission; the control group received usual care only. Usual care was all the care that nursing wards normally applied for pressure ulcer prevention without any further standardization for this study. A total of 588 patients were randomized (293 control and 295 experimental group) and the data of 543 patients could be analyzed (272 from the control and 271 from the experimental group). The incidence of sacral pressure ulcers grade 1 or higher was significantly lower in the experimental group than in the control group (8.9% vs. 14.7%). In a multilevel analysis on the incidence of pressure ulcers adjusted for Braden risk score, age, and gender, it shows an odds ratio of 0.53 (95% confidence interval: 0.29-0.95), meaning a significant protective effect of the AMS. These results are in line with the results of two earlier trials on the AMS in hospital patients. The majority of patients in our trial that used an AMS rated it positively, but one-third found the sheepskin too warm. We conclude that the AMS is an effective aid in the prevention of sacral pressure ulcers in nursing home patients. Show less
