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Objective: To explore the course of quality of life (QoL) and possible resident-related predictors associated with this course in institutionalized people with young-onset dementia (YOD)., Design: An observational longitudinal study., Setting and Participants: A total of 278 residents with YOD were recruited from 13 YOD special care units in the Netherlands., Methods: Secondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. QoL was assessed with proxy ratings, using the Quality of Life in Dementia (QUALIDEM) questionnaire at 4 assessment points over 18 months. Predictors included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms, and psychotropic drug use at baseline. Multilevel modeling was used to adjust for the correlation of measurements within residents and clustering of residents within nursing homes., Results: The total QUALIDEM score (range: 0-111) decreased over 18 months with a small change of 0.65 (95% confidence interval -1.27, -0.04) points per 6 months. An increase in several domains of QoL regarding care relationship, positive self-image, and feeling at home was seen over time, whereas a decline was observed in the subscales positive affect, social relations, and having something to do. Residents with higher levels of QoL and more advanced dementia at baseline showed a more progressive decline in QoL over time. Sensitivity analyses indicated a more progressive decline in QoL for residents who died during the follow-up., Conclusion and Implications: This study shows that although overall QoL in nursing home residents with YOD was relatively stable over 18 months, there were multidirectional changes in the QoL subscales that could be clinically relevant. Higher levels of QoL and more advanced stages of dementia at baseline predicted a more progressive decline in QoL over time. More longitudinal studies are needed to verify factors influencing QoL in YOD., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: Extreme neuropsychiatric symptoms can be a heavy burden for nursing home (NH) residents, relatives, and caregivers. Sometimes, when extreme neuropsychiatric symptoms are considered refractory, continuous palliative sedation is administered. The aim of this study was to explore the trajectory leading to continuous palliative sedation and its administration in NH residents with dementia and refractory neuropsychiatric symptoms., Design: A qualitative interview and explorative study was performed., Setting and Participants: Relatives, elderly care physicians, and other staff members involved with 3 NH residents with dementia and extreme refractory neuropsychiatric symptoms who received continuous palliative sedation were interviewed. These NH residents lived on dementia special care units of 3 NHs in the Netherlands., Methods: Consecutive sampling was used to select participants. Medical files were studied. Semistructured interviews were conducted. Transcriptions were analyzed with thematic analysis, including directed content analysis., Results: Nine in-depth interviews with 13 participants were held. Analysis resulted in 6 main themes, with several subthemes reflecting phases of the continuous palliative sedation trajectory: (1) run-up, describing an unbearable struggle of the resident; (2) turning point, at which hope was lost; (3) considering continuous palliative sedation and administration of intermittent sedation; (4) decision to start continuous palliative sedation based on 1 decisive trigger; (5) administration of continuous palliative sedation with stakeholders experiencing relief; and (6) evaluation., Conclusions and Implications: The trajectory leading up to continuous palliative sedation in NH residents with dementia and extreme refractory neuropsychiatric symptoms was complex and burdensome, but the initiation led to relief and contentment for all those involved. This study highlights that continuous palliative sedation can be a valuable treatment option among these residents. A recommendation is to include external consultation in the decision process and to administer intermittent sedation as a preceding step when continuous palliative sedation is considered., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: A process evaluation was performed for an intervention aimed at improvement of the management of neuropsychiatric symptoms in young-onset dementia. Data about sample quality and intervention quality was evaluated to better understand internal and external validity. In addition, data about the implementation strategy and factors affecting implementation were evaluated to improve further implementation of the intervention., Design: A model proposed by Leontjevas and colleagues consisting of first-order (validity) and second-order (implementation) data was used., Setting and Participants: Care units delivering specialized treatment and support for residents with young-onset dementia., Measures: A description of the recruitment, randomization procedure, and intervention reach was carried out to determine sample quality. To determine intervention quality, data on satisfaction, relevance, feasibility, and fidelity were collected through a questionnaire and reports logged on the server of the web-based intervention. A description of the implementation strategy was provided. Barriers and facilitators for implementation were collected by a questionnaire and analyzed by deductive content analysis., Results: Care units varied in size and were recruited from different geographical regions in the Netherlands. The informed consent rate of the residents was 87.7%. The majority of the nursing home staff were satisfied with the intervention. However, parts of the intervention were perceived as less relevant for their own organization. The feasibility of the intervention was considered low. The fidelity differed between care units. The implementation strategy did not overcome all barriers. Factors affecting implementation covered 3 themes: organizational aspects, culture of the organization, and aspects of the intervention., Conclusions: In general, our results showed sufficient internal and external validity, warranting further effect analyses. Adaptations to specific steps of the care program should be considered to increase feasibility and sustainability. In addition, integration of the care program into the electronic health records is expected to further improve implementation., (Copyright © 2018 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: The aims of this study were (1) to investigate the relationship between different neuropsychiatric symptoms (NPS) and the level of distress experienced by nurses caring for residents with young-onset dementia (YOD) and (2) to compare these findings with those for nurses caring for residents with late-onset dementia (LOD)., Design/setting: This is a retrospective study conducted in Dutch long-term care facilities. Data were used from the Behavior and Evolution of Young-ONset Dementia studies (BEYOND) Parts I and II and the WAAL Behavior in Dementia-II (Waalbed-II) study., Participants: A total of 382 nursing home residents with YOD and 261 nursing home residents with LOD were included., Measurements: The Neuropsychiatric Inventory, nursing home version, was used to assess nursing staff distress and the frequency (F) and severity (S) of NPS. Multilevel logistic regression analysis was used to investigate the relationships between nursing staff distress related to NPS and YOD and LOD care units, the F × S score per symptom, gender, dementia subtype, and dementia severity., Results: Nurses working in YOD care units rated sleep and nighttime behavior disorders, delusions, and agitation/aggression most often as highly distressing and euphoria most often as not distressing. Multivariate analyses indicated that the frequency and severity of NPS were significantly associated with staff distress in all symptoms, except for apathy. Comparison of the 2 groups of nurses demonstrated that the odds for distress related to sleep and nighttime behavior disorders were higher for nurses in YOD care units than for nurses in LOD units. For both the YOD and LOD nurses, irritability in male residents had higher impact than similar behavior in female residents., Conclusion: This study provides important insight into distress related to individual NPS and the interaction with residents' characteristics. All NPS result in distress. The frequency and severity of the behavior is an important predictor. Sleep and nighttime behavior disorders are more likely to result in distress in YOD nurses than in LOD nurses. The amount of distress related to NPS emphasizes the urgent need for adequate management of NPS and the support of professional caregivers., (Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: To study pain prevalence, pain type, and its pharmacological treatment in Dutch nursing home residents in relation to dementia subtype and dementia severity., Design: Data were collected as part of the PAINdemiA study, an observational cross-sectional study conducted between May 2014 and December 2015., Setting: Ten nursing homes in the Netherlands., Participants: A total of 199 nursing home residents in various stages of dementia., Measurements: We collected data on pain (by observation: MOBID-2 Pain Scale and by self-report scales), pain type, pain medication, dementia subtype, dementia severity (GDS), and demographic features., Results: In the whole sample, the prevalence of pain was 43% (95% confidence interval 36%-50%) using the MOBID-2 Pain Scale. Regardless of regularly scheduled analgesics, approximately one-third of the residents with pain suffered from moderate to severe pain. Pain assessment with the MOBID-2 Pain Scale showed no difference in pain between dementia subtypes, but residents with more severe dementia experienced pain more often than those with less severe dementia (27% vs 15%). The prevalence of self-reported pain was significantly higher in residents with vascular dementia (VaD) (54%) compared with those with Alzheimer disease (18%) and other dementia subtypes (14%). Nociceptive pain was the predominant type of pain (72%) followed by mixed pain (25%). Acetaminophen was the most prescribed analgesic (80%)., Conclusion: Most of the participating nursing home residents had no pain; however, pain was observed more often in residents with severe dementia, whereas residents in the early stages of VaD self-reported pain more often that those with other dementia subtypes. As one-third of the residents with clinically relevant pain had moderate to severe pain regardless of using pain medication, more focus should be on how pain management could use more tailored approaches and be regularly adjusted to individual needs., (Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: Burdensome symptoms frequently develop as part of the dementia trajectory and influence quality of life. We explore the course of symptoms and their treatment during nursing home stay to help target adequate symptom management., Design: Data were collected as part of the Dutch End of Life in Dementia study, a longitudinal observational study with up to 3.5 years of follow-up. Physicians performed assessments at baseline, semiannually, and shortly after death of pain, agitation, shortness of breath, and treatment provided for these symptoms., Setting: Long-term care facilities (28) in the Netherlands., Participants: Newly admitted nursing home residents (372) in variable stages of dementia., Measurements: We described prevalence and course of symptoms, and treatment provided for these symptoms. We used generalized estimating equations to evaluate the longitudinal change in symptoms and their treatment, and the associations between the symptoms of pain and agitation, as well as between stage of dementia and symptoms., Results: Pain was common (varying from 47% to 68% across the semiannual assessments) and frequently persistent (36%-41% of all residents); it increased to 78% in the last week of life. Agitation was the most common symptom (57%-71%), and also frequently persistent (39%-53%), yet it decreased to 35% in the last week of life. Shortness of breath was less common (16%-26%), but it increased to 52% at the end of life. Pain was not significantly associated with agitation. Advanced dementia was associated with more pain only. Treatment changed in particular at the end of life. Pain was treated mostly with acetaminophen (34%-52%), and at the end of life with parenteral opioids (44%). Agitation was mostly treated nonpharmacologically (78%-92%), and at the end of life anxiolytics were the most frequently prescribed treatment (62%). Overall, aerosolized bronchodilators were the most frequently prescribed treatment for shortness of breath (29%-67%), but at the end of life, this was morphine (69%)., Conclusion: Pain and agitation were common and frequently persisted in residents with dementia during nursing home stay, but symptom management intensified only at the end of life. Symptom control may be suboptimal from admission, and a stronger focus on symptom control is needed at an earlier stage than the end of life., (Copyright © 2015 AMDA - The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: The Grip on Challenging Behavior care program was developed using the current guidelines and models on managing challenging behavior in dementia in nursing homes. It was hypothesized that the use of the care program would lead to a decrease in challenging behavior and in the prescription of psychoactive drugs without increase in use of restraints., Design: A randomized controlled trial was undertaken using a stepped-wedge design to implement the care program and to evaluate the effects. An assessment of challenging behavior and psychoactive medication was undertaken every 4 months on all participating units followed by the introduction of the care program in a group of 3 to 4 units. A total of 6 time assessments took place over 20 months., Setting: Seventeen dementia special care units of different nursing homes., Participants: A total of 659 residents of dementia special care units. All residents with dementia on the unit were included. Units were assigned by random allocation software to 1 of 5 groups with different starting points for the implementation of the care program., Intervention: A care program consisting of various assessment procedures and tools, which ensure a multidisciplinary approach and which structure the process of managing challenging behavior in dementia., Measurements: Challenging behavior was measured using the Cohen-Mansfield Agitation Inventory (CMAI) and the Neuropsychiatric Inventory. Research assistants (blinded for intervention status of the unit) interviewed nurses on the units about challenging behavior. Data on psychoactive drugs and restraints were retrieved from resident charts., Results: A total of 2292 assessments took place involving 659 residents (1126 control measurements, 1166 intervention measurements). The group of residents who remained in the intervention condition compared with the group in the control condition differed significantly in the CMAI change scores between successive assessments [-2.4 CMAI points, 95% confidence interval (CI) -4.3 to -0.6]. No significant effects were found for the control-to-intervention group compared with the group who remained in the control group (0.0 CMAI points, 95% CI -2.3 to 2.4). Significant effects were found on 5 of the 12 Neuropsychiatric Inventory items and on the use of antipsychotics (odds ratio 0.54, 95% CI 0.37- 0.80) and antidepressants (odds ratio 0.65, 95% CI 0.44-0.94). No effect on use of restraints was observed., Conclusions: The Grip on Challenging behavior program was able to diminish some forms of challenging behavior and the use of psychoactive drugs., (Copyright © 2014 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: The objective of this study is to explore factors that elucidate reasons for psychotropic drug (PD) prescription for neuropsychiatric symptoms (NPS) in nursing home (NH) residents with dementia., Design: A qualitative study using a grounded theory approach., Setting: Twelve NHs in The Netherlands., Participants: Fifteen physicians and 14 nurses., Measurements: Individual, face-to-face, in-depth semistructured interviews. Interviews were audio recorded, transcribed, and qualitatively analyzed using Atlas.ti., Results: The qualitative analysis revealed 4 emerging themes with factors either or both enhancing or limiting PD prescription, which we used to develop a conceptual framework. First, the mindset of physicians and nurses toward NPS and PDs appeared to contribute. Second, inadequate knowledge of and experience with NPS and limited people skills of nurses may induce PD prescription. Also, knowledge of effectiveness and side effects of PDs from education, literature, and guidelines, and previous personal experiences was considered relevant. Third, effective communication and cooperation between professionals and with family may improve the appropriateness of PD prescription. Fourth, external factors including staffing issues, nursing home setting, access to consultants, national and local policies, and zeitgeist were considered to affect PD prescription., Conclusion: We have developed a conceptual framework explaining how different factors influence PD prescription. This provides opportunities for improving PD prescription in NH residents with dementia.

Abstract: Objective: To compare the Neuropsychiatric Inventory apathy subscale (NPIa) with the abbreviated Apathy Evaluation Scale (AES-10) on discriminant validity and on their performance to distinguish residents as apathetic or nonapathetic. Design: Cross-sectional design. Setting: Nursing home. Participants: 100 residents of 4 dementia special care units (n = 58) and 3 somatic units (n = 42). Measurements: Primary professional caregivers were interviewed to score the AES-10 and NPIa. The elderly care physician and the psychologist of each unit examined residents for clinical apathy using diagnostic criteria. Results: The AES-10 and NPIa correlated moderately with each other (rs  = 0.62, P < .0001). The AES-10 correlated weakly (rs  = 0.27, P = .024) and the NPIa moderately (rs  = 0.46, P = .001) with the Cornell Scale for Depression in Dementia. Receiver operating characteristic analysis showed an area under the curve (AUC) of 0.72 (P < .01) for AES-10 and 0.67 (P < .05) for NPIa. The AES-10 produced higher sums of sensitivity and negative predictive value than the NPIa. Explorative analyses revealed that both instruments produced higher scores in dementia independently of having an apathy diagnosis, whereas AUCs were significant in nondementia (AES-10: AUC = 0.88, P < .001; NPIa: AUC = 0.77, P = .023), but not in dementia. Conclusion: Both the AES-10 and NPIa may be used to distinguish apathetic from nonapathetic residents in a heterogeneous sample with and without dementia, or in residents without dementia. The AES-10 may be preferable to the NPIa apathy subscale when ruling out or screening for apathy. The performance of the scales against diagnostic criteria of apathy in dementia need to be further examined. [Copyright &y& Elsevier]