Objectives: The benefit-risk ratio of many interventions remains unclear in older adults with dementia. Efforts for more representative trial inclusion are made; however, recruiting and... Show moreObjectives: The benefit-risk ratio of many interventions remains unclear in older adults with dementia. Efforts for more representative trial inclusion are made; however, recruiting and particularly gaining informed consent remains complex. For research participation, dementia compels the designation of a legal guardian (LG) to give proxy consent. To advance future trial development, we aimed to provide more insights into the factors that affect the proxy decision-making process in dementia research. Design: A qualitative analysis of semi-structured interviews about proxy decision-making on participation in dementia research. Setting and Participants: LGs of nursing home residents that gave (n = 19) and refrained from giving (n = 18) proxy consent for a clinical trial (the Danton study) in the Netherlands. Methods: Verbatim transcripts were thematically analyzed by using a preliminary deductive framework with room for induction of additional emerging themes, being an overall abductive approach. Based on that theme list, related factors of the decision-making process were grouped into overarching levels and merged into a step-by-step process. Results: When discussing proxy decision-making on the participation of an older adult with dementia in a clinical trial, LGs described interconnected factors on the level of the study and patient. Past experiences and attitudes of the LG influenced the weighing of these study- and patient-related factors, leading to a preliminary decision. Other proxies and treating health care professionals (HCPs) were named as important other stakeholders of the decision-making process. Conclusions and Implications: When giving proxy consent for research participation, LGs weigh study- and patient-related factors, leading to an initial benefit-risk evaluation. This weighing process is influenced by LG-related factors and can be modulated by other proxies or treating HCPs, leading to a definitive decision. Although insights into these underlying mechanisms could facilitate the proxy decision-making process for both LGs and researchers, treating HCPs could act as an independent party. (c) 2023 The Authors. Published by Elsevier Inc. on behalf of AMDA - The Society for Post-Acute and Long-Term Care Medicine. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/). Show less
Advance care planning (ACP) can help prepare for future losses and decisions to be taken. However, relatives of persons with dementia may wait for healthcare professionals to initiate ACP... Show moreAdvance care planning (ACP) can help prepare for future losses and decisions to be taken. However, relatives of persons with dementia may wait for healthcare professionals to initiate ACP conversations which may not adequately address their individual information needs. To evaluate inducing and enhancing conversations about meaning and loss, we conducted an ethnographic study on nurse-led ACP conversations using a question prompt list (QPL) on six dementia wards of a nursing home in the Netherlands from January to September 2021. Staff received training in using the QPL, with information and sample questions to inspire relatives to ask their questions, in particular on meaning and loss. Thematic analysis was applied to transcribed interviews and memos of observations. Nursing staff in particular was concerned about having to be available to answer questions continuously. Relatives used the study as an opportunity to get in touch with professionals, and they saw the QPL as an acknowledgement of their needs. There was a mismatch in that staff wished to discuss care goals and complete a care plan, but the relatives wanted to (first) address practical matters. A QPL can be helpful to conversations about meaning and loss, but nursing staff need dedicated time and substantial training. Joint agenda setting before the conversation may help resolve a mismatch in the preferred topics and timing of conversations. 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
To protect nursing home residents from getting infected with COVID-19, several measures have been imposed. The aim of this study was to describe the impact of these measures on activities for Dutch... Show moreTo protect nursing home residents from getting infected with COVID-19, several measures have been imposed. The aim of this study was to describe the impact of these measures on activities for Dutch nursing home residents, the conditions under which the activities could take place, and the considerations when making decisions about the (dis)continuation of activities. The study consisted of the data of the qualitative MINUTES-study. Textual units derived from documentation of an outbreak team (OT) meetings on activities, well-being, informal caregivers, and volunteers from 39 long-term care organizations were re-analyzed using a content analysis. The results shows that OTs more often discussed restarting and continuing activities than stopping activities during the COVID-19 pandemic. There were differences between time periods, but activities never completely stopped according to the minutes. Activities were offered in an adapted way, often under certain conditions, such as organizing activities at other locations (e.g., outside), with limited group size, and following specific guidelines. The main focus of the considerations made were the ability to adhere to the guidelines, the well-being of residents, ensuring safety, and balancing benefits versus risks given vaccination availability and coverage. Overall, the study showed that organizing activities for nursing home residents despite COVID-19 measures is possible. Show less
J. du; Janus, S.; Voorthuis, B.; Manen, J. van; Achterberg, W.; Smalbrugge, M.; ... ; Zuidema, S. 2022
Objective: Several European studies investigated the trends in psychotropic drug prescriptions (PDPs) among nursing home (NH) residents and reported a decline in antipsychotics prescriptions. Since... Show moreObjective: Several European studies investigated the trends in psychotropic drug prescriptions (PDPs) among nursing home (NH) residents and reported a decline in antipsychotics prescriptions. Since the Dutch long-term care system differs from other European systems (e.g. higher threshold for NH admission and trained elderly care physicians), this study explores the trends in PDPs in Dutch NH residents with dementia.Methods: The study used data from nine studies, comprising two cross-sectional studies, one cohort study, and six cluster-randomized controlled trials, collected in Dutch NHs between 2003 and 2018. With multilevel logistic regression analysis, NHs as a random effect, we estimated the trends in PDPs overall and for five specific psychotropic drug groups (antipsychotics, antidepressants, anxiolytics, hypnotics, and anti-dementia drugs), adjusting for confounders: age, gender, severity of dementia, severity of neuropsychiatric symptoms, and length of stay in NHs.Results: The absolute prescription rate of antipsychotics was 37.5% in 2003 and decreased (OR = 0.947, 95% CI [0.926, 0.970]) every year. The absolute prescription rate of anti-dementia drugs was 0.8% in 2003 and increased (OR = 1.162, 95% CI [1.105, 1.223]) per year, The absolute rate of overall PDPs declined from 62.7% in 2003 to 40.4% in 2018.Conclusions: Among Dutch NH residents with dementia, the odds of antipsychotics prescriptions decreased by 5.3% per year while the odds of anti-dementia drug prescriptions increased by 16.2%. There were no distinct trends in antidepressants, anxiolytics, and hypnotics prescriptions. However, overall PDPs were still high. The PDPs in NH residents remain an issue of concern. Show less
Steen, J. van der; Tong, W.H.; Groothuijse, J.; Ommering, B.W.C. 2022
Purpose: Evidence underpinning treatment of older persons with complex conditions is often sparse, and involving more early career physicians committed to optimizing care for older adults may help... Show morePurpose: Evidence underpinning treatment of older persons with complex conditions is often sparse, and involving more early career physicians committed to optimizing care for older adults may help increase a relevant evidence base. We examined perception of and motivation to conduct research in physicians (residents) specializing in care of older adults. Subjects and Methods: Residents of an academic medical centre in the Netherlands enrolled in a 3-year training programme. The programme includes a mandatory evidence-based medicine (EBM) training study on pain and discomfort in cognitively impaired nursing home patients, in which residents perform their research over the 3-year duration of the programme. We employed a mixed-methods design with survey and qualitative interviews (December 2019-April 2020). The survey included validated scales with agreement response options rated 1-7. Qualitative interviews were underpinned by interpretative phenomenological analysis. Results: Of 38 invited residents, 23 (15 females) participated. The mean score on perceptions of research was 4.1 (SD 0.8); on intrinsic motivation 4.8 (SD 1.0); on extrinsic motivation 4.3, with a higher SD of 1.4. Eight interviews also showed diversity in the extent to which residents felt equipped to conduct the mandatory EBM training study, and research more generally, which was related to previous experiences performing research. The residents generally did not anticipate conducting research themselves despite recognizing the benefits of training in research Conclusion: Perceptions and motivation of the residents specializing in care of older people to conduct research, although considered relevant to their practice, were not very positive. The study results in recommendations to motivate physicians in geriatrics training to conduct research, eg through personalized boosting of self-efficacy. This is crucial to motivate future physicians to contribute to research relevant to older people in more ways than just delivering data for research conceived by (non-clinical) researchers. 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
The recognition and treatment of pain in nursing home residents presents challenges best addressed by a multidisciplinary approach. This approach is also recommended in the applicable Dutch... Show moreThe recognition and treatment of pain in nursing home residents presents challenges best addressed by a multidisciplinary approach. This approach is also recommended in the applicable Dutch guideline; however, translating guidelines into practical strategies is often difficult in nursing homes. Nevertheless, a better understanding of guideline implementation is key to improving the quality of care. Here we describe and qualitatively evaluate the implementation process of the multidisciplinary guideline 'Recognition and treatment of chronic pain in vulnerable elderly' in a Dutch nursing home. The researchers used interviews and document analyses to study the nursing home's implementation of the guideline. The project team of the nursing home first filled out an implementation matrix to formulate goals based on preferred knowledge, attitudes, and behaviors for the defined target groups. Together with experts and organizations, pharmacotherapy audit meetings were organized, an expert pain team was appointed, a policy document and policy flowchart were prepared, and 'anchor personnel' were assigned to disseminate knowledge amongst professionals. Implementation was partially successful and resulted in a functioning pain team, a pain policy, the selection of preferred measurement instruments, and pain becoming a fixed topic during multidisciplinary meetings. Nevertheless, relatively few professionals were aware of the implementation process. Show less
Background: Understanding if and how pain influences activities of daily living (ADL) in dementia is essential to improving pain management and ADL functioning. This study examined the relationship... Show moreBackground: Understanding if and how pain influences activities of daily living (ADL) in dementia is essential to improving pain management and ADL functioning. This study examined the relationship between the course of pain and change in ADL functioning, both generally and regarding specific ADL functions.Methods: Participants were Dutch nursing home residents (n = 229) with advanced dementia. ADL functioning was assessed with the Katz ADL scale, and pain with the Dutch version of the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC-D). Changes of PACSLAC-D and Katz ADL scores were computed based on the difference in scores between baseline, 3-month and 6-month follow-up. Multivariate linear regression models were used to assess the relationships between change in pain score, change in total ADL score and specific ADL item scores during follow-up.Results: At baseline, residents had a median ADL score of 18 (interquartile range 13-22, range 6-24) and 48% of the residents were in pain (PACSLAC-D >= 4). Residents with pain were more ADL dependent than residents without pain. A change in pain score within the first 3 months was a significant predictor for a decline in ADL functioning over the 6-month follow-up (B = 0.10, SE = 0.05, P = 0.045), and specifically, a decline on the items 'transferring' over the 6-month follow-up and `feeding' during the first 3 months of follow-up.Conclusions: Pain is associated with ADL functioning cross-sectionally, and a change in pain score predicts a decline in ADL functioning, independent of dementia severity. Awareness of (changes in) ADL activities is clearly important and might result in both improved recognition of pain and improved pain management. Show less
Objective Although behavioral changes are common in nursing home residents with dementia and caffeine is known to influence behavior in healthy adults, the effects of caffeine on the behavior of... Show moreObjective Although behavioral changes are common in nursing home residents with dementia and caffeine is known to influence behavior in healthy adults, the effects of caffeine on the behavior of persons with dementia has received little attention. In this study we assessed the relationship of caffeine and behavioral symptoms in older persons with dementia. Design A multicenter sub-cohort study embedded in the Elderly Care Physicians (ECP) training program. Setting Dutch nursing homes associated with the ECP training program. Participants A total of 206 individuals with both diabetes and dementia resident in Dutch nursing homes. Measurements Trainee ECPs collected data on caffeine consumption, cognition and behavioral symptoms using the NPI-NH, MDS-DRS and AES-C. Data on factors known to influence behavior in persons with dementia (e.g. marital status, kidney function, urinary tract infection and medication) were also collected. Results Of the 206 participants, 70% showed behavioral symptoms. An increase in caffeine consumption was associated with a decrease in the presence of behavioral symptoms in the NPI-NH cluster affect and NPI-NH item agitation. Caffeine consumption groups also differed on the presence of disinhibition and depression. In addition, the severity of dementia influenced agitation, anxiety and the clusters affect and psychomotor. Conclusion In a large group of older persons with dementia resident in nursing homes, a low daily consumption of caffeine was associated with greater behavioral symptoms. Show less
Purpose This study aimed to evaluate what types and forms of support nursing staff need in providing palliative care for persons with dementia. Another aim was to compare the needs of nursing staff... Show morePurpose This study aimed to evaluate what types and forms of support nursing staff need in providing palliative care for persons with dementia. Another aim was to compare the needs of nursing staff with different educational levels and working in home care or in nursing homes.Design A cross-sectional, descriptive survey design was used.Methods A questionnaire was administered to a convenience sample of Dutch nursing staff working in the home care or nursing home setting. Data were collected from July through October 2018. Quantitative survey data were analyzed using descriptive statistics. Data from two open-ended survey questions were investigated using content analysis.Findings The sample comprised 416 respondents. Nursing staff with different educational levels and working in different settings indicated largely similar needs. The highest-ranking needs for support were in dealing with family disagreement in end-of-life decision making (58%), dealing with challenging behaviors (41%), and recognizing and managing pain (38%). The highest-ranking form of support was peer-to-peer learning (51%). If respondents would have more time to do their work, devoting personal attention would be a priority.Conclusions Nursing staff with different educational levels and working in home care or in nursing homes endorsed similar needs in providing palliative care for persons with dementia and their loved ones.Clinical Relevance It is critical to understand the specific needs of nursing staff in order to develop tailored strategies. Interventions aimed at increasing the competence of nursing staff in providing palliative care for persons with dementia may target similar areas to support a heterogeneous group of nurses and nurse assistants, working in home care or in a nursing home. Show less
