Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study: an intervention study aimed at improvement in the management of neuropsychiatric symptoms in institutionalized people with young onset dementia.

ABSTRACTBackground:Both neuropsychiatric symptoms (NPS) and psychotropic drug use (PDU) are common in institutionalized People with Young Onset Dementia (PwYOD) and can produce negative outcomes such as reduced quality of life and high workload. In community-dwelling PwYOD, NPS are found to be associated with unmet care needs. This emphasizes the importance of a care program for the management of NPS in institutionalized PwYOD that also addresses unmet care needs and PDU. The objectives of the Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study are to develop a care program for the management of NPS in institutionalized PwYOD and to evaluate its effectiveness. METHODS: The care program consists of an educational program combined with an intervention to manage NPS with the following five steps: the evaluation of psychotropic drug prescription, detection, analysis (including the detection of unmet needs), treatment and the evaluation of NPS. A stepped wedge design will be used to evaluate its effectiveness. The primary outcomes are agitation and aggression and other NPS. The secondary outcomes are PDU, quality of life, the workload of nursing staff and job satisfaction. Additionally, a process analysis and a cost-consequence analysis will be conducted. CONCLUSIONS: The study protocol of the Beyond-II study describes the development, implementation and evaluation of a care program for the management of NPS in institutionalized PwYOD. This care program provides a structured method for the management of NPS, in which unmet needs and PDU are also addressed.

EEG-neurofeedback training and quality of life of institutionalized elderly women (a pilot study).

This pilot study attempted to study the applicability of neurofeedback for elderly persons living in nursing homes. We hypothesized an improve of cognitive functioning and the independence in daily life (IDL) of elderly people by using low beta (12-15HZ) EEG neurofeedback training (E-NFT). The participants (active E-NFT group, n=10; control group, n=6) were community living elderly women without dementia. Neurofeedback training was adjusted ten times within 9 weeks, with a training duration of 21 minutes by use of a single electrode, which was centrally placed on the skull surface. Executive functioning (measured with the Rey and fluency tasks), memory capacity (measured with the 15 words test), and IDL (measured with the Groningen Activity Restriction Scale) were measured before and after ten E-NFT sessions in nine weeks. No effects were found for IDL nor executive functioning. Interestingly, performance on the memory test improved in the experimental group, indicating a possible positive effect of E-NFT on memory in elderly women. This study demonstrates that E-NFT is applicable to older institutionalized women. The outcome of this pilot-study justifies the investigation of possible memory effects in future studies.

Disentangling the concept of "the complex older patient" in general practice: a qualitative study.

BACKGROUND: The rising life expectancy in the developed world leads to an increase in the number of older patients and the complexity of their complaints in general practice. Although interventions and support for general practitioners are available, implementation lags. Knowledge on what determines a complex older patient, the problems of which general practitioners encounter and the situations they actually need support for, is necessary for better implementation. METHODS: To provide support to general practitioners in their struggle with complex older patients, the aim of this research was to disentangle the concept of the complex older patient in general practice. A qualitative approach was used consisting of 15 semi-structured interviews with general practitioners. The general practitioner was asked to prepare a case of a complex older patient out of their own practice that could be discussed during the interview. Transcripts of the interview were analysed using inductive thematic analysis. RESULTS: Analysis of the interviews resulted in twelve themes that could be categorised into five factors that contribute to the complexity of cases of older patients. The five factors are: not being in charge, different views on necessary care, encountering the boundaries of medicine, limits to providing social care, ill-equipped. CONCLUSION: The factors that were found imply that a better organisational structure for elderly care and consulting elderly care physicians could support general practitioners in providing care for older complex patients. Furthermore, understanding the current concept of patient autonomy seems unjustified in cases of complex older patients.

The cost-effectiveness of grip on challenging behaviour: an economic evaluation of a care programme for managing challenging behaviour.

OBJECTIVE: The objective of the study was to evaluate the cost-effectiveness of implementing the Grip on Challenging Behaviour care programme (GRIP) on dementia special care units in comparison with usual care. METHODS: A stepped wedge design was used. Challenging behaviour and quality of life were measured using the Cohen Mansfield Agitation Inventory (CMAI) and the QUALIDEM. Quality-adjusted life years (QALYs) were calculated using the EuroQol-5D. Psychoactive medication use (range 0-5 per measurement) and sick leave were registered. Costs included medication, time spent on challenging behaviour and education. Costs and effects were analysed using linear multilevel regression. Incremental cost-effectiveness ratios were calculated. Statistical uncertainty was estimated using bootstrapping. RESULTS: Seventeen dementia special care units participated. GRIP led to improvement on the QUALIDEM subscale social relations (1.6; 95% CI 0.18 to 3.4) and on the use of psychoactive medication (-0.73; 95% CI -1.1 to -0.46) and to a decrease in QALYs (-0.02; 95% CI -0.06 to -0.003). No significant effects on CMAI, sick leave and other QUALIDEM subscales were found. The intervention was not cost-effective in comparison with usual care with regard to CMAI score, QALYs and sick leave. The willingness to pay should be 320€/point improvement on the QUALIDEM subscale social relations and 370€/psychoactive medication less to reach a 0.95 probability of cost-effectiveness. CONCLUSION: It depends on how much society is willing to pay whether GRIP can be considered cost-effective. Because the appropriateness of the current methods for analysing cost-effectiveness in this specific population is uncertain, the positive effects on behaviour, medication and job satisfactions should also be taken in account in the decision making.

Different methods to analyze stepped wedge trial designs revealed different aspects of intervention effects.

OBJECTIVES: Within epidemiology, a stepped wedge trial design (i.e., a one-way crossover trial in which several arms start the intervention at different time points) is increasingly popular as an alternative to a classical cluster randomized controlled trial. Despite this increasing popularity, there is a huge variation in the methods used to analyze data from a stepped wedge trial design. STUDY DESIGN AND SETTING: Four linear mixed models were used to analyze data from a stepped wedge trial design on two example data sets. The four methods were chosen because they have been (frequently) used in practice. Method 1 compares all the intervention measurements with the control measurements. Method 2 treats the intervention variable as a time-independent categorical variable comparing the different arms with each other. In method 3, the intervention variable is a time-dependent categorical variable comparing groups with different number of intervention measurements, whereas in method 4, the changes in the outcome variable between subsequent measurements are analyzed. RESULTS: Regarding the results in the first example data set, methods 1 and 3 showed a strong positive intervention effect, which disappeared after adjusting for time. Method 2 showed an inverse intervention effect, whereas method 4 did not show a significant effect at all. In the second example data set, the results were the opposite. Both methods 2 and 4 showed significant intervention effects, whereas the other two methods did not. For method 4, the intervention effect attenuated after adjustment for time. CONCLUSION: Different methods to analyze data from a stepped wedge trial design reveal different aspects of a possible intervention effect. The choice of a method partly depends on the type of the intervention and the possible time-dependent effect of the intervention. Furthermore, it is advised to combine the results of the different methods to obtain an interpretable overall result.

Coming to grips with challenging behaviour: a cluster randomised controlled trial on the effects of a new care programme for challenging behaviour on burnout, job satisfaction and job demands of care staff on dementia special care units.

BACKGROUND: Caring for people with dementia in dementia special care units is a demanding job. Challenging behaviour is one of the factors influencing the job satisfaction and burnout of care staff. A care programme for the challenging behaviour of nursing home residents with dementia might, next to diminishing the challenging behaviour of residents, improve job satisfaction and reduce the care staff's feelings of burnout. OBJECTIVES: To determine the effects of a care programme for the challenging behaviour of nursing home residents with dementia on the burnout, job satisfaction and job demands of care staff. DESIGN: The care programme was implemented according to a stepped wedge design in which care units were randomly divided over five groups with different time points of starting with implementation. SETTING: 17 Dutch dementia special care units. PARTICIPANTS: Care staff members of the 17 units. INTERVENTION: The care programme consists of an education package and of various structured assessment tools that guide professionals through the multidisciplinary detection, analysis, treatment and evaluation of treatment of challenging behaviour. METHODS: Burnout, job satisfaction and job demands were measured before implementation, halfway through the implementation process and after all the care units had implemented the care programme. Burnout was measured with the Dutch version of the Maslach burnout inventory (UBOS-C, three subscales); job satisfaction and job demands were measured with subscales of the Leiden Quality of Work Questionnaire. Mixed model analyses were used to determine effects. Care staff could not be blinded for the intervention. RESULTS: Of the 1441 questionnaires, 645 were returned (response 45%, 318 control measurements, 327 intervention measurements) by 380 unique care staff members. Significant effects were found on job satisfaction (0.93, 95% CI 0.48-1.38). On the other outcomes, no significant changes in the scores were found. CONCLUSION: Positive effects of using the Grip on Challenging behaviour care programme were found on job satisfaction, without an increase in job demands.

Nurses in distress? An explorative study into the relation between distress and individual neuropsychiatric symptoms of people with dementia in nursing homes.

OBJECTIVES: To optimize care and interventions to improve care, and to reduce staff burden, it is important to have knowledge of the relation between individual neuropsychiatric symptoms and distress of care staff. We therefore explored the relation between frequency and severity of individual neuropsychiatric symptoms and distress of care staff. DESIGN: This is an explorative study with a cross-sectional design. PARTICIPANTS AND SETTING: Care staff was interviewed regarding 432 residents of 17 nursing homes for people with dementia. MEASUREMENTS: Behavioural problems were assessed using the Nursing Home version of the Neuropsychiatric Inventory (NPI-NH) questionnaire. The distress scale of the NPI-NH was used to determine the distress of care staff. RESULTS: Agitation/aggression had the highest mean distress score and was also the most prevalent symptom. Disinhibition and irritability/lability also had high mean distress scores, whereas euphoria/elation, hallucinations and apathy had the lowest mean distress score. The symptom severity of each symptom strongly predicted the distress score, whereas the frequency of the symptoms was a less important factor. CONCLUSIONS: Although some of these findings are in accordance with studies among informal caregivers, there are also notable differences. Apathy caused little distress among care staff. Therefore, care staff might not feel the urgency to explore the causes of this symptom. The findings of this study emphasize the importance of supporting care staff in the management of behavioural problems, especially aggression and apathy.

Quality of life of nursing-home residents with dementia subject to surveillance technology versus physical restraints: an explorative study.

OBJECTIVE: As physical restraints should only be used in exceptional cases, there is an urgent need for alternatives to restraint use. Surveillance technology could be such an alternative. This study explored whether nursing-home residents with dementia subjected to surveillance technology had better quality of life scores for mood, behavioral and societal dimensions than residents with physical restraints. METHODS: Quality of life was assessed longitudinally, with three measurements in six psychogeriatric nursing homes of residents with surveillance technology (n = 170) and residents with physical restraints (n = 22). QUALIDEM subscales were used to measure five dimensions of quality of life. Multilevel longitudinal univariate and multivariate regression techniques were used to analyze the data. RESULTS: Because physical restraints were almost exclusively used in residents with low activities of daily living (ADL) independency (18 of the 22), we restricted the regression analyses to residents with a Barthel Index score ≤ 5 (overall n = 53). Univariate results showed that highly ADL-dependent residents with surveillance technology had significantly more positive affect than highly ADL-dependent residents with physical restraints. However, this difference proved to be no longer significant after adjustment for the confounders: age, sex and stage of dementia. CONCLUSIONS: Quality of life of highly ADL-dependent nursing-home residents with dementia seems to be unrelated to the use of surveillance technology as opposed to physical restraints.