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On May 11, the Dutch Government allowed 26 nursing homes to welcome 1 visitor per resident, after 2 months of lockdown. The study aimed to monitor in-depth the feasibility of the regulations and their impact on the well-being of residents, their visitors, and healthcare staff.
Mixed-methods study in 5 of the 26 facilities; the facilities were affiliated to an academic network of nursing homes.
Visitors and healthcare professionals.
Allowing visitors using local regulations based on national guidelines.
Digital questionnaire, analyzing documentation such as infection prevention control protocols, attending meetings of COVID-19 crisis teams, in-depth telephone or in-person interviews with visitors and healthcare professionals, and on-site observations.
National guidelines were translated with great variety into local care practice. Healthcare professionals agreed that reopening would increase the well-being of the residents and their loved ones. However, there were also great worries for increasing workload, increasing the risk of emotional exhaustion, and the risk of COVID-19 infections. Compliance with local regulations was generally satisfactory, but maintaining social distance and correctly wearing face masks appeared to be difficult. Care staff remained ambivalent for fear of infections. In general, allowing visitors was experienced as having a positive impact on the well-being of all stakeholders. Nevertheless, some residents with dementia showed negative effects.
The complete lockdown of Dutch nursing homes had a substantial impact on the well-being of the residents. The reopening was welcomed by all stakeholders, but provided a high organizational workload as well as feelings of ambivalence among care staff. In the second wave, a more tailored approach is being implemented. However, facilities are sometimes still struggling to find the right balance between infection control and well-being.
Before drawing conclusions on the contribution of an effective intervention to daily practice and initiating dissemination, its quality and implementation in daily practice should be optimal. The aim of this process evaluation was to study these aspects alongside a randomized controlled trial investigating the effects of a multidisciplinary biannual medication review in long-term care organizations (NTR3569).
Process evaluation with multiple measurements.
Thirteen units for people with dementia in six long-term care organizations in the Netherlands.
Physicians, pharmacists, and nursing staff of participating units.
The PROPER intervention is a structured and biannually repeated multidisciplinary medication review supported by organizational preparation and education, evaluation, and guidance.
Web-based questionnaires, interviews, attendance lists of education sessions, medication reviews and evaluation meetings, minutes, evaluation, and registration forms.
Participation rates in education sessions (95%), medication reviews (95%), and evaluation meetings (82%) were high. The intervention’s relevance and feasibility and applied implementation strategies were highly rated. However, the education sessions and conversations during medication reviews were too pharmacologically oriented for several nursing staff members. Identified barriers to implementation were required time, investment, planning issues, and high staff turnover; facilitators were the positive attitude of professionals toward the intervention, the support of higher management, and the appointment of a local implementation coordinator.
Implementation was successful. The commitment of both higher management and professionals was an important factor. This may partly have been due to the subject being topical; Dutch long-term-care organizations are pressed to lower inappropriate psychotropic drug use.
Objectives: To adequately monitor the course of cognitive functioning in persons with moderate to severe dementia, relevant cognitive tests for the advanced dementia stages are needed. We examined the ability of a test developed for the advanced dementia stages, the Severe Impairment Battery Short version (SIB-S), to measure cognitive change over time. Second, we examined type of memory impairment measured with the SIB-S in different dementia stages. Methods: Participants were institutionalized persons with moderate to severe dementia (N = 217). The SIB-S was administered at 6-month intervals during a 2-year period. Dementia severity at baseline was classified according to Global Deterioration Scale criteria. We used mixed models to evaluate the course of SIB-S total and domain scores, and whether dementia stage at baseline affected these courses. Results: SIB-S total scores declined significantly over time, and the course of decline differed significantly between dementia stages at baseline. Persons with moderately severe dementia declined faster in mean SIB-S total scores than persons with moderate or severe dementia. Between persons with moderate and moderately severe dementia, there was only a difference in the rate of decline of semantic items, but not episodic and non-semantic items. Conclusions: Although modest floor and slight ceiling effects were noted in severe and milder cases, respectively, the SIB-S proved to be one of few available adequate measures of cognitive change in institutionalized persons with moderate to severe dementia. (JINS, 2019, 25, 204–214)
Since its development, the Qualidem has had items that were considered unsuited for people with very severe dementia. This study attempted to investigate the applicability of all Qualidem items in people with all stages of dementia severity.
Four data sets that contained Qualidem observations on people with dementia were combined. Dementia severity was categorized based on the Global Deterioration Scale (GDS), with a dichotomization of very severe dementia (GDS 7) and others (GDS 1–6). Unidimensional latent-trait models (Mokken scaling) were estimated to fit the Qualidem responses in the overall sample and the dichotomized groups. Scalability was assessed using coefficients of homogeneity (Loevinger's H), while reliability was assessed with Cronbach's α and ρ.
Combining the four databases resulted in 4,354 Qualidem measurements. The scalability of all scales was considered acceptable in the overall sample, as well is in the subgroups (all H > 0.3). Additionally, the reliability was good–excellent in the scales: “positive affect,” “positive self-image,” “care relationship,” and “negative affect.” Reliability was questionable–acceptable for “feeling at home,” “social relations,” “social isolation,” and “restless tense behavior.” Reliability was poor for “having something to do.”
Statistical considerations allow using all Qualidem items in all dementia stages. Future research should determine balance of statistical- versus conceptual-based reasoning in this academic debate.
This study explores the appropriateness of psychotropic drug (PD) use for neuropsychiatric symptoms (NPS) in nursing home patients with dementia.
A cross-sectional study on 559 patients with dementia residing on dementia special care units in Dutch nursing homes was conducted. Appropriateness of PD use was assessed using the Appropriate Psychotropic drug use In Dementia (APID) index. The APID index score is calculated using information about individual PDs from patients’ medical records. The index encompasses seven (different) domains of appropriateness, i.e. indication, evaluation, dosage, drug-drug interactions, drug-disease interactions, duplications, and therapy duration.
A total of 578 PDs were used for NPS by 60% of the nursing home patients. Indication, evaluation, and therapy duration contributed the most to inappropriate use. Ten per cent of the PDs scored fully appropriate according to the APID index sum score, 36% scored fully appropriate for indication, 46% scored fully appropriate for evaluation, and 58% scored fully appropriate for therapy duration. Antidepressants were used the most appropriately, and antiepileptics the most inappropriately.
The minority of the PD use was fully appropriate. The results imply that PD use for NPS in dementia can be improved; the appropriateness should be optimized with a clinical focus on the appropriate indications, evaluations, and therapy duration.
To produce a practice guideline that includes a set of detailed consensus principles regarding the prescription of antipsychotics (APs) amongst people with dementia living in care homes.
We used a modified Delphi consensus procedure with three rounds, where we actively specified and optimized statements throughout the process, utilizing input from four focus groups, carried out in UK, Norway, and the Netherlands. This was done to identify relevant themes and a set of statement that experts agreed upon using the Research and Development/University of California at Los Angeles (RAND/UCLA) methodology.
A total of 72 scientific and clinical experts and 14 consumer experts reached consensus upon 150 statements covering five themes: (1) General prescription stipulations, (2) assessments prior to prescription, (3) care and treatment plan, (4) discontinuation, and (5) long-term treatment.
In this practice guideline, novel information was provided about detailed indication and thresholds of symptoms, risk factors, circumstances at which APs should be stopped or tapered, specific criteria for justifying long-term treatment, involvement of the multidisciplinary team, and family caregiver in the process of prescription. The practice guideline is based on formal consensus of clinicians and consumer experts and provides clinicians relevant practical information that is lacking in current guidelines.
Although exact figures are lacking, many studies show that mental–physical multimorbidity is common in older people (van den Brink et al., 2013). Particularly, older patients with a chronic disease often have psychiatric disorders (Verdurmen et al., 2006). Conversely, medical comorbidity is common in psychiatric patients, especially cardiovascular, pulmonary, and neurological disorders and diabetes (Lyketsos et al., 2002).
Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the children's needs.
Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes.
The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and children's need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services.
In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach.
Background: Aging societies will be confronted with increased numbers of long-term care (LTC) residents with multimorbidity of physical and mental disorders other than dementia. Knowledge about the prevalence rates, medical and psychosocial characteristics, and care needs of this particular group of residents is mandatory for providing high-quality and evidence-based care. The purpose of this paper was to review the literature regarding these features.
Methods: A systematic literature search was conducted in PubMed, EMBASE, PsycINFO, and CINAHL from January 1, 1988 to August 16, 2011. Two reviewers independently assessed eligibility of studies on pre-established inclusion criteria as well as methodological quality using standardized checklists.
Results: Seventeen articles were included. Only one small study describes multimorbidity of a wide range of chronic psychiatric and somatic conditions in LTC residents and suggests that physical–mental multimorbidity is rather rule than exception. All other studies show prevalence rates of comorbid physical and mental illnesses (range, 0.5%–64.7%), roughly in line with reported prevalence rates among community-dwelling older people. LTC residents with mental–physical multimorbidity were younger than other LTC residents and had more cognitive impairment, no dementia, and problem behaviors. Care needs of these residents were not described.
Conclusions: Although exact figures are lacking, mental–physical multimorbidity is common in LTC residents. Given the specific characteristics of the pertaining residents, more knowledge of their specific care needs is essential. The first step now should be to perform research on symptoms and behavior, which seem more informative than diagnostic labels as well as care needs of LTC residents with mental–physical multimorbidity.
Background: Paratonia causes severe movement dysfunction in late stage dementia. Passive Movement Therapy (PMT) is often used to decrease high muscle tone, but the efficacy has never been shown. The objective of this study is to investigate the effect of PMT on muscle tone after two and four weeks of treatment.
Methods: This study comprised a multicenter single-blinded RCT. Nursing home residents with dementia (according to the DSM-IV-TR criteria) and moderate to severe paratonia were randomly assigned to either a PMT or control group. The PMT group received PMT three times a week over four weeks. The control group received no PMT. The primary outcome was the severity of paratonia as measured by the Modified Ashworth scale (MAS). Secondary outcomes were clinical change (Clinical Global Impression; CGI), caregiver's burden (modified patient specific complaints; PSC), and level of pain during morning care (Pain Assessment Checklist for Elderly with Limited Ability to Communicate, Dutch version; PACSLAC-D). All outcomes were assessed at baseline and after two and four weeks. The MAS, PACSLAC-D, and PSC data were subjected to multilevel mixed linear analysis, and the CGI data to cross-tabulation χ2 analysis.
Results: One-hundred-and-one patients from 12 Dutch nursing homes participated in the study; data from 47 patients in the PME group and 54 controls were analyzed. Patients receiving PMT performed no better in paratonia assessments, nor on CGI, PSC, or PACSLAC-D, than controls in two and four week's time.
Conclusion: PMT has no beneficial effects and should therefore not be recommended as an intervention in severe paratonia.
Trial registration: Current Controlled Trials ISRCTN43069940
Background: The aim of the study was to examine whether staff distress and aspects of the nursing home environment were associated with psychotropic drug use (PDU) in patients with dementia.
Methods: This was a cross-sectional study of 1289 nursing home patients with dementia from 56 Dementia Special Care Units (SCUs) in the Netherlands. The primary outcome was PDU. Potential correlates of PDU were staff distress, environmental correlates (the number of patients per unit or per living room, staff/patient ratio, and the presence of a walking circuit), and patient factors (gender, age, dementia severity, and neuropsychiatric symptoms (NPS)). Multilevel logistic regression analysis was used to estimate the relative contributions of predictor variables in explaining PDU.
Results: Staff distress, aspects of the physical nursing home environment and patients’ neuropsychiatric symptoms were independently associated with PDU. Staff distress at patients’ agitation was associated with antipsychotic and anxiolytic drug use (OR 1.66, 95% CI (1.16–2.36) and 1.62 (1.00–2.61), respectively). SCUs with more patients per living room had higher hypnotic drug use (OR 1.08, 95% CI (1.02–1.14)). Low staff/patient ratio was associated with high antidepressant drug use (OR 0.13, 95% CI (0.04–0.47)). The effects of nursing home environment on study outcome were smallest for antidepressant use (intra-SCU correlation 0.005) and highest for hypnotic use (intra-SCU correlation 0.171).
Conclusion: Staff distress and other environmental aspects are independently associated with PDU. These findings raise questions about the appropriateness of psychoactive drug prescriptions for nursing home patients with dementia.
Background: Recognizing and diagnosing early onset dementia (EOD) can be complex and often takes longer than for late onset dementia. The objectives of this study are to investigate the barriers to diagnosis and to develop a typology of the diagnosis pathway for EOD caregivers.
Methods: Semi-structured interviews with 92 EOD caregivers were analyzed using constant comparative analysis and grounded theory. A conceptual model was formed based on 21 interviews and tested in 29 additional transcripts. The identified categories were quantified in the whole sample.
Results: Seven themes emerged: (1) changes in the family member, (2) disrupted family life, (3) misattribution, (4) denial and refusal to seek advice, (5) lack of confirmation from social context, (6) non-responsiveness of a general practitioner (GP), and (7) misdiagnosis. Cognitive and behavioral changes in the person with EOD were common and difficult to understand for caregivers. Marital difficulties, problems with children and work/financial issues were important topics. Confirmation of family members and being aware of problems at work were important for caregivers to notice deficits and/or seek help. Other main issues were a patient's refusal to seek help resulting from denial and inadequate help resulting from misdiagnosis.
Conclusion: EOD caregivers experience a long and difficult period before diagnosis. We hypothesize that denial, refusal to seek help, misattribution of symptoms, lack of confirmation from the social context, professionals’ inadequate help and faulty diagnoses prolong the time before diagnosis. These findings underline the need for faster and more adequate help from health-care professionals and provide issues to focus on when supporting caregivers of people with EOD.
Background: Paratonia is a progressive motor problem that is observed in individuals with dementia and is not a well-known phenomenon. This study explores the development and risk factors of paratonia in moderate stage dementia patients.
Methods: A multi-center, longitudinal, one-year follow-up cohort study was performed. Patients with an established diagnosis of dementia, with a score of 6 or lower on the Global Deterioration Scale (GDS) were included. The participants were assessed using the Paratonia Assessment Instrument (PAI), the Timed Up and GO test, the Qualidem, the Global Deterioration Scale (Reisberg et al., 1982) and the Mini-mental State Examination. Information about each patient's diagnosis of dementia, comorbidities and use of medication were obtained from the participant's medical file. The PAI was assessed every three months, the other variables at baseline and after 12 months. Cross-tabulation χ2 and logistic regression tests were used for the statistical analyses.
Results: Baseline measures were assessed in the 204 participants – 111 (54%) female and 93 (46%) male, with a mean age of 79.8 years (56–97). Seventy-one patients (34.8%) were diagnosed with paratonia at baseline, and 51 patients developed paratonia over one year. The highest hazard ratio (3.1) for developing paratonia within one year was observed in the vascular dementia group. The logistic regression analysis revealed that the presence of diabetes mellitus (OR = 10.7) was significantly related to the development of paratonia (Wald χ2 p-value < 0.01).
Conclusions: Diabetes mellitus and likely vascular damage are risk factors for the development of paratonia.
Background: The IPA Taskforce on Mental Health Issues in Long-Term Care Homes seeks to improve mental health care in long-term care (LTC) homes. The aim of this paper is to provide recommendations on comprehensive assessment of depression and behavioral problems in order to further stimulate countries and professionals to enhance their quality of care.
Methods: Existing guidelines on comprehensive assessment of depression or behavioral problems in nursing home (NH) patients or patients residing in LTC homes were collected and a literature review was carried out to search for recent evidence.
Results: Five guidelines from several countries all over the world and two additional papers were included in this paper as a starting point for the recommendations. Comprehensive assessment of depression in LTC homes consists of a two-step screening procedure: an investigation to identify factors that influence the symptoms, followed by a formal diagnosis of depression according to DSM-IV-TR or the Provisional Diagnostic Criteria for Depression in Alzheimer Disease in cases of dementia. Comprehensive assessment of behavioral problems encompasses three steps: description and clarification of the behavior, additional investigation, and assessment of probable causes of the behavior. The procedure starts in the case of moderate behavioral problems.
Conclusion: The recommendations given in this paper provide a useful guide to professional workers in the LTC sector, but clinical judgment and the consideration of the unique aspects of individual residents and their situations is necessary for an optimal assessment of depression and behavioral problems. The recommendations should not be rigidly applied and implementation will differ from country to country.
Background: Neuropsychiatric symptoms in dementia patients are common and are often treated with psychotropic drugs. The aim of this study was to determine the prevalence and correlates of psychotropic drug use in Dutch nursing home patients with dementia.
Methods: Psychotropic drug use of 1322 patients on 59 dementia special care units (SCUs) in 25 nursing homes was registered. Drugs were categorized according to the Anatomical Therapeutical Chemical classification (ATC). The influence of age, gender, dementia stage measured by the Global Deterioration Scale (GDS), and type of neuropsychiatric symptoms on psychotropic drug use was analyzed using binomial logistic regression analysis.
Results: 63% of the patients used at least one psychotropic drug. Psychotropics in general and antipsychotics in particular were most frequently prescribed in GDS stage 6, and in patients aged between 65 and 75 years. Psychotropics in general were positively associated with depression, night-time behavior and agitation. Antipsychotic drug use was positively associated with psychosis, agitation and night-time behavior and was negatively associated with apathy. Anxiolytics were associated with age, psychosis, agitation and night-time behavior. Antidepressants were most frequently prescribed in GDS stage 6 and associated with female gender, agitation and depression. Sedatives were only associated with night-time behavior.
Conclusion: Nursing home patients with dementia have a high prevalence of psychotropic drug use. In particular, the association with neuropsychiatric symptoms raises questions of efficacy of these drugs and the risk of chronic use.
Background: Paratonia is one of the associated movement disorders characteristic of dementia. The aim of this study was to develop an assessment tool (the Paratonia Assessment Instrument, PAI), based on the new consensus definition of paratonia. An additional aim was to investigate the reliability and validity of the PAI.
Methods: A three-phase cross-sectional survey was conducted. In the first two phases, the PAI was developed and validated. In the third phase, the inter-observer reliability and feasibility of the instrument was tested.
Results: The original PAI consisted of five criteria that all needed to be met in order to make the diagnosis. On the basis of a qualitative analysis, one criterion was reformulated and another was removed. Following this, inter-observer reliability between the two assessors resulted in an improvement of Cohen's κ from 0.532 in the initial phase to 0.677 in the second phase. This improvement was substantiated in the third phase by two independent assessors with Cohen's κ ranging from 0.625 to 1.
Conclusion: The PAI is a reliable and valid assessment tool for diagnosing paratonia in elderly people with dementia that can be applied easily in daily practice.
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