Sandra A. Zwijsen

Ethics of using assistive technology in the care for community-dwelling elderly people: An overview of the literature

Objectives: This article provides an overview of the international literature on the most important ethical considerations in the field of assistive technology (AT) in the care for community-dwelling elderly people, focused on dementia. Method: A systematic literature review was performed. Results: A total of 46 papers met the inclusion criteria. Three main themes were found. The first theme, personal living environment, involves the subthemes privacy, autonomy and obtrusiveness. The second theme, the outside world, involves the subthemes stigma and human contact. The third theme, the design of AT devices, involves the subthemes individual approach, affordability and safety. The often referred to umbrella term of ‘obtrusiveness’ is frequently used by many authors in the discussion, while a clear description of the concept is mostly absent. Conclusion: When it comes to AT use in the care for elderly people living at home, ethical debate appears not to be a priority. The little discussion there relies heavily on thick concepts such as autonomy and obtrusiveness which seem to complicate the debate rather than clarify it, because they contain many underlying ambiguous concepts and assumptions. Most encountered ethical objections originate from the view that people are, or should be, independent and self-determinant. It is questionable whether the view is correct and helpful in the debate on AT use in the care for (frail) elderly people. Other ethical approaches that view people as social and reciprocal might be more applicable and shed a different light on the ethical aspects of AT use.

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

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.

Coming to Grips With Challenging Behavior: A Cluster Randomized Controlled Trial on the Effects of a Multidisciplinary Care Program for Challenging Behavior in Dementia

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.

Grip on challenging behaviour: a multidisciplinary care programme for managing behavioural problems in nursing home residents with dementia. Study protocol

BackgroundBehavioural problems are common in nursing home residents with dementia and they often are burdensome for both residents and nursing staff. In this study, the effectiveness and cost-effectiveness of a new care programme for managing behavioural problems will be evaluated.Methods/DesignThe care programme is based on Dutch national guidelines. It will consist of four steps: detection, analysis, treatment and evaluation. A stepped wedge design will be used. A total of 14 dementia special care units will implement the care programme. The primary outcome is behavioural problems. Secondary outcomes will include quality of life, prescription rate of antipsychotics, use of physical restraints and workload and job satisfaction of nursing staff. The effect of the care programme will be estimated using multilevel linear regression analysis. An economic evaluation from a societal perspective will also be carried out.DiscussionThe care programme is expected to be cost-effective and effective in decreasing behavioural problems, workload of nursing staff and in increasing quality of life of residents.Trial registrationThe Netherlands National Trial Register (NTR). Trial number: NTR%202141

Surveillance technology: An alternative to physical restraints? A qualitative study among professionals working in nursing homes for people with dementia

BACKGROUND Working with surveillance technology as an alternative to traditional restraints creates obvious differences in the way care is organised. It is not clear whether professional caregivers find working with surveillance technology useful and workable and whether surveillance technology is indeed used to diminish restraint use. OBJECTIVES The aim of this study was to obtain an insight into the view of Dutch dementia care professionals on the feasibility of surveillance technology as an alternative to physical restraints. DESIGN Qualitative study. SETTING The study was carried out in seven nursing homes for people with dementia in The Netherlands. PARTICIPANTS AND METHODS Semi-structured interviews were held with nine key persons from seven nursing homes for people with dementia. Also, six focus group discussions were held with groups of nurses and two focus group discussions were held with multidisciplinary teams. RESULTS The dementia care professionals named three different ways in which surveillance technology can be used: to provide safety in general, to provide additional safety, and to provide more freedom for the residents. In addition to this, the dementia care professionals mentioned four limitations in the use of surveillance technology: it is unable to prevent falling, it cannot guarantee quick help, it does not always work properly, and it could violate privacy. CONCLUSION Dementia care professionals consider surveillance technology supplemental to physical restraints, rather than as an alternative. Improvement of devices and education of care professionals might increase the support for using surveillance technology as an alternative to physical restraints.

Grip on challenging behavior: process evaluation of the implementation of a care program

BackgroundThe Grip on Challenging Behavior care program for managing challenging behavior was implemented in the dementia special care units of 17 Dutch nursing homes. A process evaluation of the implementation of the care program was performed to determine the quality of the implementation and the lessons to be learned for future implementation.MethodsThe care program was implemented according to a stepped wedge design. First-order data (data on recruitment, reach, relevance and feasibility) were used to determine the validity of the study, and second-order data (intervention quality and the barriers and facilitators for implementing the care program) were used to describe the implementation process. Two structured questionnaires were administered to care staff and key stakeholders and semi-structured interviews were held in the units.ResultsUniversity affiliated and non-affiliated nursing homes from different parts of the Netherlands participated. The resident participation rate was over 95% and the participation rate for the training sessions was 82%. Respondents considered the care program relevant and feasible. The degree of implementation was not optimal. The barriers and facilitators in implementing the care program could be divided into three categories: organizational aspects, culture on the unit and aspects of the care program itself.ConclusionsThe recruitment, reach, relevance and feasibility are sufficient to allow for analysis and generalization of the effects of the care program, but the degree of implementation should be taken into account in further analysis. Future projects that involve implementation should consider the specific features of the organization and the cultural orientation of the unit to better adapt to specific needs.Trial registrationThe Netherlands National Trial register under number NTR2141 registered on 11 December 2009. Randomization took place in November 2010, and the first intervention group started using the intervention in February 2011.

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 staffs 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.

Understanding the world of dementia. How do people with dementia experience the world

BACKGROUND There is growing awareness that the subjective experience of people with dementia is important for understanding behavior and improving quality of life. This paper reviews and reflects on the currently available theories on subjective experience in dementia and it explores the possibility of a knowledge gap on the influence of neurological deficits on experience in late stage dementia. METHODS A literature review on current commonly used theories on experience in dementia was supplemented with a systematic review in PubMed and Psychinfo. For the systematic review, the terms used were Perception and Dementia and Behavior; and Awareness and Dementia and Long term care. RESULTS Current models emphasize the psychosocial factors that influence subjective experience, but the consequences of neurological deficits are not elaborated upon. The systematic literature search on the neuropsychological functioning in dementia resulted in 631 papers, of which 94 were selected for review. The current knowledge is limited to the early stages of Alzheimers disease. Next to memory impairments, perception of the direct environment, interpretation of the environment, and inhibition of own responses to the environment seem to be altered in people with dementia. CONCLUSIONS Without knowledge on how perception, interpretation and the ability for response control are altered, the behavior of people with dementia can easily be misinterpreted. Research into neuropsychological functioning of people in more severe stages and different forms of dementia is needed to be able to develop a model that is truly biopsychosocial. The proposed model can be used in such research as a starting point for developing tests and theories.

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.

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.