The Course of Depressive Symptoms Over 36 Months in 696 Newly Admitted Nursing Home Residents

ObjectivesTo investigate the course of depressive symptoms in newly admitted nursing home (NH) residents and how resident characteristics were associated with the symptoms. To identify groups of residents following the same symptom trajectory.DesignAn observational, multicenter, longitudinal study over 36 months with 7 biannual assessments.Setting and ParticipantsRepresenting 47 Norwegian NHs, 696 residents were included at admission to a NH.MethodsDepressive symptoms were assessed with the Cornell Scale for Depression in Dementia (CSDD). We selected severity of dementia, functional impairment, physical health, pain, use of antidepressants, age, and sex as covariates. Time trend in CSDD score was assessed by a linear mixed model adjusting for covariates. Next, a growth mixture model was estimated to investigate whether there were groups of residents following distinct trajectories in CSDD scores. We estimated a nominal regression model to assess whether the covariates at admission were associated to group membership.ResultsThere was a nonlinear trend in CSDD score. More severe dementia, a lower level of functioning, poorer physical health, more pain, use of antidepressants, and younger age at admission were associated with higher CSDD scores. Growth mixture model identified 4 groups: (1) persistent mild symptoms (32.6%), (2) persistent moderate symptoms (50.8%), (3) increasing symptoms (5.1%), and (4) severe but decreasing symptoms (11.6%). A lower level of functioning, poorer physical health, more pain, use of antidepressants, and younger age at admission were associated with higher odds for belonging to the severe but decreasing symptoms group compared with the persistent mild symptoms group.Conclusions and ImplicationsMost NH residents were in trajectory groups with persistent mild or moderate depressive symptoms. Residents with more severe dementia, lower levels of functioning, poor physical health, severe pain, younger age at admittance, and who are using antidepressants should be monitored closely and systematically with respect to depression. Taking actions toward a more personalized treatment for depression in NHs is a priority and should be investigated in future studies.     

Facility Characteristics Associated With Intensity of Care of Nursing Homes and Hospital Referral Regions

ObjectivesIntensity of care, such as hospital transfers and tube feeding of residents with advanced dementia varies by nursing home (NH) within and across regions. Little work has been done to understand how these 2 levels of influence relate. This study's objectives are to identify facility factors associated with NHs providing high-intensity care to residents with advanced dementia and determine whether these factors differ within and across hospital referral regions (HRRs).DesignCross-sectional analysis.Setting and Participants1449 NHs.MethodsNationwide 2016–2017 Minimum Data Set was used to categorize NHs and HRRs into 4 levels of care intensity based on rates of hospital transfers and tube feeding among residents with advanced dementia: low-intensity NH in a low-intensity HRR, high-intensity NH in a low-intensity HRR, low-intensity NH in a high-intensity HRR, and a high-intensity NH in a high-intensity HRR.ResultsIn high-intensity HRRs, high-vs low-intensity NHs were more likely to be urban, lack a dementia unit, have a nurse practitioner or physician (NP or PA) on staff, and have a higher proportion of residents who were male, aged <65 years, Black, had pressure ulcers, and shorter hospice stays. In low-intensity HRRs, higher proportion of Black residents was the only characteristic associated with being a high-intensity NH.Conclusions and ImplicationsThese findings suggest that within high-intensity HRRs, there are potentially modifiable factors that could be targeted to reduce burdensome care in advanced dementia, including having a dementia unit, palliative care training for NPs and PAs, and increased use of hospice care.     

The Minimum Data Set Agitated and Reactive Behavior Scale: Measuring Behaviors in Nursing Home Residents With Dementia

ObjectivesInterventions aimed at managing agitated and aggressive behaviors in dementia without the use of antipsychotics are currently being tested in nursing homes (NHs). Researchers and clinicians require a measure that can capture the severity of residents’ behaviors. We test the internal consistency and construct validity of the Agitated and Reactive Behavior Scale (ARBS), a measure created using data from mandatory NH assessments.DesignCross-sectional.Setting and ParticipantsThe 2016 national sample of 15,326 Centers for Medicare and Medicaid Services-certified NHs. The analytic sample included 489,854 new admissions and 765,367 long-stay residents (at least 90 days in NH). All participants have a dementia diagnosis.MethodsMinimum Data Set (MDS), version 3.0. The ARBS is a composite measure of (1) physical behavioral symptoms directed at other people; (2) verbal behavioral symptoms directed at other people; (3) other behavioral symptoms not directed at other people; and (4) rejection of care. Variables used to establish construct validity included degree of cognitive impairment, use of medications for managing agitation and aggression, and co-occurring conditions associated with agitated and aggressive behaviors (eg, schizophrenia, depression, or delirium).ResultsThis report has 3 important findings: (1) the ARBS score has borderline-adequate internal consistency (α = .64-.71) in the national population NH residents with dementia; (2) only 18% of new admissions and 21% of long-stay residents with dementia evidence any agitated or aggressive behaviors in the last week, as rated in the MDS assessment; and (3) the ARBS demonstrates good construct validity; it increases with cognitive impairment, treatment with relevant medications, and co-occurring psychiatric conditions and symptoms.DiscussionNationally available MDS data may significantly underestimate the prevalence of agitated and aggressive behaviors among NH residents with dementia.Conclusions and ImplicationsResearchers conducting pragmatic trials of non-pharmaceutical interventions to manage behaviors in NH residents with dementia should consider the likely underdetection of these behaviors in the available MDS data.     

Soundscape Awareness Intervention Reduced Neuropsychiatric Symptoms in Nursing Home Residents With Dementia: A Cluster-Randomized Trial With MoSART+

ObjectivesAuditory environments as perceived by an individual, also called soundscapes, are often suboptimal for nursing home residents. Poor soundscapes have been associated with neuropsychiatric symptoms (NPS). We evaluated the effect of the Mobile Soundscape Appraisal and Recording Technology sound awareness intervention (MoSART+) on NPS in nursing home residents with dementia.DesignA 15-month, stepped-wedge, cluster-randomized trial. Every 3 months, a nursing home switched from care as usual to the use of the intervention.InterventionThe 3-month MoSART+ intervention involved ambassador training, staff performing sound measurements with the MoSART application, meetings, and implementation of microinterventions. The goal was to raise awareness about soundscapes and their influence on residents.Setting and participantsWe included 110 residents with dementia in 5 Dutch nursing homes. Exclusion criteria were palliative sedation and deafness.MethodsThe primary outcome was NPS severity measured with the Neuropsychiatric Inventory–Nursing Home version (NPI-NH) by the resident’s primary nurse. Secondary outcomes were quality of life (QUALIDEM), psychotropic drug use (ATC), staff workload (workload questionnaire), and staff job satisfaction (Maastricht Questionnaire of Job Satisfaction).ResultsThe mean age of the residents (n = 97) at enrollment was 86.5 ± 6.7 years, and 76 were female (76.8%). The mean NPI-NH score was 17.5 ± 17.3. One nursing home did not implement the intervention because of staff shortages. Intention-to-treat analysis showed a clinically relevant reduction in NPS between the study groups (?8.0, 95% CI –11.7, ?2.6). There was no clear effect on quality of life [odds ratio (OR) 2.8, 95% CI –0.7, 6.3], psychotropic drug use (1.2, 95% CI 0.9, 1.7), staff workload (?0.3, 95% CI –0.3, 0.8), or staff job satisfaction (?0.2, 95% CI –1.2, 0.7).Conclusions and ImplicationsMoSART+ empowered staff to adapt the local soundscape, and the intervention effectively reduced staff-reported levels of NPS in nursing home residents with dementia. Nursing homes should consider implementing interventions to improve the soundscape.     

The Negative Impact of Psychotropic Drug Use on Quality of Life in Nursing Home Patients at Different Stages of Dementia: Cross-Sectional Analyses from the COSMOS Trial

ObjectivesThe quality of life (QoL) in nursing home (NH) patients with dementia is threatened by neuropsychiatric symptoms. This may trigger the use of psychotropic drugs, yet it is unknown if this practice improves the QoL. We investigated the association between the number of psychotropic drugs and QoL at different stages of dementia, adjusted for neuropsychiatric symptoms.DesignCross-sectional analysis of baseline data from the COSMOS study, a multicenter, cluster-randomized, single-blinded, controlled trial.Setting and ParticipationFour hundred thirty-one patients (aged ≥65 years) with and without dementia from 33 Norwegian NHs comprising 67 wards.MeasuresQoL assessed by Quality of Life in Late Stage Dementia (QUALID) and Quality of Life in Dementia (QUALIDEM), neuropsychiatric symptoms by Neuropsychiatric Inventory–Nursing Home version, and cognition by Mini-Mental State Examination.ResultsAt least 1 psychotropic drug was prescribed to 71% of the 431 participants included in the final sample. We estimated the trend in mean QoL scores over the number of psychotropic drugs in patients with clinical significant neuropsychiatric symptom load. QoL assessed by QUALID and QUALIDEM decreased by increasing number of psychotropic drugs (P < .001). No psychotropic drugs (mean QUALID score 20 ± 0.5, mean QUALIDEM score 40 ± 8.1) compared to ≥3 psychotropic drug (mean QUALID score 25 ± 7.8, mean QUALIDEM score 33 ± 8.0). This association was evident in mild, moderate, and severe dementia but absent in people without dementia. Use of antidepressant agents in mild and moderate dementia was associated with increased QoL compared with no use of antidepressant agents.Conclusions and ImplicationsOverall, our findings suggest that psychotropic drugs might pose a threat to QoL in NH patients at all stages of dementia, possibly with the exception of use of antidepressant agents in mild to moderate dementia. This underlines the need for updated knowledge on psychopharmacologic treatment and implementation of procedures for maintaining QoL in dementia care facilities.     

Characteristics Associated with Feeding Tube Placement: Retrospective Cohort Study of Texas Nursing Home Residents with Advanced Dementia

ObjectivesTo investigate resident-level, provider-type, nursing home (NH), and regional factors associated with feeding tube (FT) placement in advanced dementia.DesignRetrospective cohort study.Setting and ParticipantsNH residents in Texas with dementia diagnosis and severe cognitive impairment (N = 20,582).MethodsThis study used 2011-2016 Texas Medicare data to identify NH residents with a stay of at least 120 days who had a diagnosis of dementia on Long Term Care Minimum Data Set (MDS) evaluation and severe cognitive impairment on clinical score. Multivariable repeated measures analyses were conducted to identify associations between FT placement and resident-level, provider-type, NH, and regional factors.ResultsThe prevalence of FT placement in advanced dementia in Texas between 2011 and 2016 ranged from 12.5% to 16.1% with a nonlinear trend. At the resident level, the prevalence of FT decreased with age [age > 85 years, prevalence ratio (PR) 0.60, 95% confidence interval (CI) 0.52-0.69] and increased among residents who are black (2.74, 95% CI 2.48-3.03) or Hispanic (PR 1.91, 95% CI 1.71-2.13). Residents cared for by a nurse practitioner or physician assistant were less likely to have an FT (PR 0.90, 95% CI 0.85-0.96). No facility characteristics were associated with prevalence of FT placement in advanced dementia. There were regional differences in FT placement with the highest use areas on the Texas-Mexico border and in South and East Texas (Harlingen border area, PR 4.26, 95% CI 3.69-4.86; San Antonio border area, PR 3.93, 95% CI 3.04-4.93; Houston, PR 2.17, 95% CI 1.87-2.50), and in metro areas (PR 1.36, 95% CI 1.22-1.50).Conclusions and ImplicationsRegional, race, and ethnic variations in prevalence of FT use among NH residents suggest opportunities for clinicians and policy makers to improve the quality of end-of-life care by especially considering other palliative care measures for minorities living in border towns.     

The Prevalence and Course of Neuropsychiatric Symptoms in Nursing Home Patients With Dementia: A Systematic Review

BackgroundPersons with dementia frequently exhibit neuropsychiatric symptoms (NPSs). Previous studies have indicated that the prevalence is particularly high in nursing home (NH) patients. However, differences in methodology in studies of the prevalence and course of NPSs have made it difficult to compare their results.MethodsWe searched the electronic databases MEDLINE, EMBASE, PsycINFO, Ovid Nursing, and AgeLine from their inception until July 2012 using medical subject headings to identify studies that reported figures on the prevalence and course of NPSs in NH patients with dementia.ResultsA total of 28 studies met the inclusion criteria. In total, 8468 and 1458 persons participated in the prevalence and longitudinal studies, respectively. The weighted mean prevalence of having at least one NPS was 82%. Although the prevalence of individual symptoms varied, the highest prevalence figures were found for agitation and apathy. The persistence of individual NPSs varied substantially, but in these studies, having at least one NPS was highly persistent across the studies.ConclusionThis review confirms that clinically significant NPSs are common in NH patients with dementia. Even though great variability exists across studies, recent studies applying similar methodology have made comparisons between studies feasible, revealing relatively consistent prevalence patterns for individual symptoms. The natural course of symptoms deserves closer attention. This is vital in planning prevention and treatment of NPSs in NH patients with dementia.     

Continuous Palliative Sedation Until Death: The Development of a Practice Protocol for Nursing Homes

ObjectivesChallenges inherent in the practice of continuous palliative sedation until death appear to be particularly pervasive in nursing homes. We aimed to develop a protocol to improve the quality of the practice in Belgian nursing homes.MethodsThe development of the protocol was based on the Medical Research Council Framework and made use of the findings of a systematic review of existing improvement initiatives and focus groups with 71 health care professionals [palliative care physicians, general practitioners (GPs), and nursing home staff] identifying perceived barriers to the use of continuous palliative sedation until death in nursing homes. The protocol was then reviewed and refined by another 70 health care professionals (palliative care physicians, geriatricians, GPs, and nursing home staff) through 10 expert panels.ResultsThe final protocol was signed off by expert panels after 2 consultation rounds in which the remaining issues were ironed out. The protocol encompassed 7 sequential steps and is primarily focused on clarification of the medical and social situation, communication with all care providers involved and with the resident and/or relatives, the organization of care, the actual performance of continuous sedation, and the supporting of relatives and care providers during and after the procedure. Although consistent with existing guidelines, our protocol describes more comprehensively recommendations about coordination and collaboration practices in nursing homes as well as specific matters such as how to communicate with fellow residents and give them the opportunity to say goodbye in some way to the person who is dying.Conclusions and ImplicationsThis study succeeded in developing a practice protocol for continuous palliative sedation until death adapted to the specific context of nursing homes. Before implementing it, future research should focus on developing profound implementation strategies and on thoroughly evaluating its effectiveness.     

Underrecognition and undertreatment of dementia in italian nursing homes

ObjectiveTo determine the prevalence of dementia diagnoses and the use of antidementia drugs in a cohort of Italian older nursing home (NH) residents.DesignCross-sectional study.SettingThe NH residents participating in 2 studies: the U.L.I.S.S.E. study and the Umbria Region survey.ParticipantsA total of 2215 nursing home residents.MeasurementEach resident underwent a comprehensive geriatric assessment at baseline by means of the RAI MDS 2.0. Dementia diagnosis was based on ICD-9 codes.ResultsThe prevalence of dementia diagnosis according to ICD-9 codes was 50.7% (n = 1123), whereas 312 subjects had cognitive impairment with a cognitive performance scale score ≥3 without a diagnosis of dementia. Only 56 NH residents were treated (5% of the sample) and the main drugs used were cholinesterase inhibitor, whereas only 1 subject was treated with memantine. Limiting our analysis to patients with mild to moderate Alzheimer's disease, who are those reimbursed by the public health care system for receiving antidementia drugs, the percentage rose to 11.3%.ConclusionThese findings demonstrate a high rate of underdiagnosis and undertreatment of dementia in Italian NH residents. Potential explanations include the lack of systematic assessment of cognitive functions, the limitations to antidementia drug reimbursement, the complexity of the reimbursement procedure itself, and the high prevalence of patients with severe dementia. Older NH residents still lack proper access to state-of-the-art diagnosis and treatment for a devastating condition such as dementia.     

The ethics of palliative sedation as a therapy of last resort

Many patients nearing the end of life reach a point at which the goals of care change from an emphasis on prolonging life and optimizing function to maximizing the quality of remaining life, and palliative care becomes a priority. For some patients, however, even high-quality aggressive palliative care fails to provide relief. For patients suffering from severe pain, dyspnea, vomiting, or other symptoms that prove refractory to treatment, there is a consensus that palliative sedation is an appropriate intervention of last resort. In this report, the National Ethics Committee, Veterans Health Administration examines what is meant by palliative sedation, explores ethical concerns about the practice, reviews the emerging professional consensus regarding the use of palliative sedation for managing severe, refractory symptoms at the end of life, and offers specific recommendations for institutional policy.     

Effects of a Humanoid Companion Robot on Dementia Symptoms and Caregiver Distress for Residents in Long-Term Care

ObjectivesTo test the effects of deploying a humanoid companion robot (Kabochan) in comparison with usual care for long-term care facilities’ residents with dementia.DesignA 2-arm, randomized controlled trial with ABAB withdrawal design, lasting 32 weeks. After an 8-week baseline period, Kabochan was introduced in a nonfacilitated, individual approach with experimental-group participants (n = 52) for 8 weeks, then removed for 8 weeks, and then reintroduced for another 8 weeks. The control group (n = 51) received the usual standardized care.Setting and ParticipantsSeven long-term care facilities in Hong Kong. 103 residents (76% women, 87.2 ± 7.4 years) with a clinical diagnosis of dementia.MeasuresOutcome assessments occurred at 5 time points: baseline (week 1) and the end of each phase (weeks 8, 16, 24, and 32). Primary outcomes were assessed with the Neuropsychiatric Inventory Questionnaire (symptom severity and caregiver distress subscales) and the Geriatric Depression Scale; secondary outcomes were measured by the Hong Kong Montreal Cognitive Assessment 5-minute Protocol, the Modified Barthel Index for Activities of Daily Living, and the Quality of Life–Alzheimer's disease scale.ResultsA multivariate analysis of variance indicated a statistically significant group × time interaction for neuropsychiatric-related caregiver distress at week 16 (F = 6.72, P = .011), with a moderate effect size (η_p² = 0.06). When Kabochan was removed in the withdrawal phase (weeks 17–24), the neuropsychiatric symptoms became more severe at week 24 for the intervention group (F = 4.68, P = .003), although the effect size was small to moderate (η_p² = 0.04). No statistical between-group differences were found in other health outcomes.Conclusions and ImplicationsThe Kabochan was potentially effective at reducing short-term neuropsychiatric symptoms and relevant caregiver distress for residents with dementia. An individualized care plan with continuous monitoring is required to integrate the humanoid robot into routine dementia care.     

Development and Testing of a Decision Aid on Goals of Care for Advanced Dementia

ObjectivesDecision aids are effective to improve decision-making, yet they are rarely tested in nursing homes (NHs). Study objectives were to (1) examine the feasibility of a goals of care (GOC) decision aid for surrogate decision-makers (SDMs) of persons with dementia; and (2) to test its effect on quality of communication and decision-making.DesignPre-post intervention to test a GOC decision aid intervention for SDMs for persons with dementia in NHs. Investigators collected data from reviews of resident health records and interviews with SDMs at baseline and 3-month follow-up.SettingTwo NHs in North Carolina.ParticipantsEighteen residents who were over 65 years of age, had moderate to severe dementia on the global deterioration scale (5, 6, or 7), and an English-speaking surrogate decision-maker.Intervention(1) GOC decision aid video viewed by the SDM and (2) a structured care plan meeting between the SDM and interdisciplinary NH team.MeasurementsSurrogate knowledge, quality of communication with health care providers, surrogate-provider concordance on goals of care, and palliative care domains addressed in the care plan.ResultsEighty-nine percent of the SDMs thought the decision aid was relevant to their needs. After viewing the video decision aid, SDMs increased the number of correct responses on knowledge-based questions (12.5 vs 14.2; P < .001). At 3 months, they reported improved quality of communication scores (6.1 vs 6.8; P = .01) and improved concordance on primary goal of care with NH team (50% vs 78%; P = .003). The number of palliative care domains addressed in the care plan increased (1.8 vs 4.3; P < .001).ConclusionsThe decision-support intervention piloted in this study was feasible and relevant for surrogate decision-makers of persons with advanced dementia in NHs, and it improved quality of communication between SDM and NH providers. A larger randomized clinical trial is underway to provide further evidence of the effects of this decision aid intervention.     

Factors Associated With Antimicrobial Use in Nursing Home Residents With Advanced Dementia

ObjectivesWidespread antimicrobial misuse among nursing home (NH) residents with advanced dementia raises concerns regarding the emergence of multidrug-resistant organisms and avoidable treatment burden in this vulnerable population. The objective of this report was to identify facility and resident level characteristics associated with receipt of antimicrobials in this population.DesignCross-sectional analysis of baseline data from the Trial to Reduce Antimicrobial use in Nursing home residents with Alzheimer's disease and other Dementias (TRAIN-AD).Setting and ParticipantsTwenty-eight Boston area NHs, 430 long stay NH residents with advanced dementia.MeasuresThe outcome was the proportion of residents who received any antimicrobials during the 2 months prior to the start of TRAIN-AD determined by chart review. Multivariable logistic regression was used to identify resident and facility characteristics associated with this outcome.ResultsA total of 13.7% of NH residents with advanced dementia received antimicrobials in the 2 months prior to the start of TRAIN-AD. Residents in facilities with the following characteristics were significantly more likely to receive antimicrobials: having a full time nurse practitioner/physician assistant on staff [adjusted odds ratio (aOR) 3.02; 95% confidence interval (CI), 1.54, 5.94], fewer existing infectious disease practices (eg, antimicrobial stewardship programs, established algorithms for infection management) (aOR, 2.35; 95% CI 1.14, 4.84), and having fewer residents with severely cognitively impaired residents (aOR 1.96; 95% CI 1.12, 3.40). No resident characteristics were independently associated with receipt of antimicrobials.Conclusions and ImplicationsFacility-level characteristics are associated with the receipt of antimicrobials among residents with advanced dementia. Implementation of more intense infectious disease practices and targeting the prescribing practices of nurse practitioners/physician assistants may be critical targets for interventions aimed at reducing antimicrobial use in this population.     

The Rising Frequency of Continuous Deep Sedation in the Netherlands,a Repeated Cross-Sectional Survey in 2005, 2010, and 2015

ObjectivesIn the Netherlands, the use of continuous deep sedation at the end of life has sharply increased from 8.2% of all deaths in 2005 to 12.3% in 2010 to 18.3 % in 2015. We describe its clinical characteristics in 2015 and compare it with 2010 and 2005.DesignQuestionnaire study in random samples of death reported to a central death registry.Setting and participantsA nationwide study in the Netherlands among physicians attending reported deaths.MethodsContinuous deep sedation characteristics (patient characteristics, drugs, duration, estimated shortening of life, and palliative consultation) from the Netherlands in 2015 were compared with continuous deep sedation characteristics of 2010 and 2005.ResultsThe response rate was 78% (n = 7277) in 2015, 74% (n = 6263) in 2010, and 78% (n = 6860) in 2005. The increased frequency of continuous deep sedation was notable in all patient subgroups, but mainly occurred among deaths attended by general practitioners, particularly in patients older than 80 years and patients with cancer. In 2015, continuous deep sedation was performed in 93% of the patients through administration of benzodiazepines. In 3% of the patients, the sedation lasted more than 1 week. Furthermore, 60% of the physicians reported that they had no intention to hasten death, 38% reported that they have taken hastening of death into account, and 2% reported their intention was to hasten death. For 1 in 5 patients, a palliative care expert was consulted prior to the start of sedation. These characteristics were comparable between 2015 and 2010.Conclusions and implicationsThe increase in continuous deep sedation mainly occurred in deaths attended by general practitioners, especially in older patients and patients with cancer. As there are no major shifts in demographic and epidemiologic patterns of dying, future studies should investigate possible explanations for the increase predominantly in societal developments, such as increased attention to sedation in education and society, a broader interpretation of the concept of refractoriness, and an increased need of patients and physicians to control the dying process.     

Telehealth Palliative Care in Nursing Homes: A Scoping Review

ObjectivesMany adults older than 65 spend time in a nursing home (NH) at the end of life where specialist palliative care is limited. However, telehealth may improve access to palliative care services. A review of the literature was conducted to synthesize the evidence for telehealth palliative care in NHs to provide recommendations for practice, research, and policy.DesignJoanna Briggs Institute guidance for scoping reviews, and Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews frameworks were used to guide this literature review.Settings and ParticipantsReviewed articles focused on residents in NHs with telehealth palliative care interventionists operating remotely. Participants included NH residents, care partner(s), and NH staff/clinicians.MethodsWe searched Medline (Ovid), Embase (Elsevier), Cochrane Library (WileyOnline), Scopus (Elsevier), CINHAL (EBSCOhost), Trip PRO, and Dissertations & Theses Global (ProQuest) in June 2021, with an update in January 2022. We included observational and qualitative studies, clinical trials, quality improvement projects, and case and clinical reports that self-identified as telehealth palliative care for NH residents.ResultsThe review yielded 11 eligible articles published in the United States and internationally from 2008 to 2020. Articles described live video as the preferred telehealth delivery modality with goals of care and physical aspects of care being most commonly addressed. Findings in the articles focused on 5 patient and family-centered outcomes: symptom management, quality of life, advance care planning, health care use, and evaluation of care. Consistent benefits of telehealth palliative care included increased documentation of goals of care and decrease in acute care use. Disadvantages included technological difficulties and increased NH financial burden.Conclusions and ImplicationsAlthough limited in scope and quality, the current evidence for telehealth palliative care interventions shows promise for improving quality and outcomes of serious illness care in NHs. Future empirical studies should focus on intervention effectiveness, implementation outcomes (eg, managing technology), stakeholders’ experience, and costs.     

The Course of Quality of Life and Its Predictors in Nursing Home Residents With Young-Onset Dementia

ObjectiveTo 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).DesignAn observational longitudinal study.Setting and ParticipantsA total of 278 residents with YOD were recruited from 13 YOD special care units in the Netherlands.MethodsSecondary 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.ResultsThe 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 ImplicationsThis 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.