None listed
Conditions
Brief summary
Misremembering (providing inaccurate narratives of events) is a commonly reported behaviour for individuals with Major Neurocognitive Disorder. Misremembering has been linked with reduced engagement in health care activities, and is associated with increased burden for caregivers of those with Major Neurocognitive Disorder. Most psychological accounts of misremembering focus on the form (or type) of the statements in order to select treatments. However, this approach does not support selection of evidence-based approaches that are matched to the reasons why people misremember, and so may not be optimally effective. This study aims to consider misremembering in adults with Major Neurocognitive Disorder from a behaviour analytic perspective. The study will use methods of observation, assessment (direct and indirect), and intervention approaches, to understand why different people engage in behaviours of misremembering, and what interventions best address these behaviours, based on why the behaviour is happening. The study will contribute to literature on behavioural understandings of misremembering, and inform clinical practice of behaviour analysts working with adults who misremember. It is expected that these improvements to practice will help to bolster implementation effectiveness and quality of life for adults with Major Neurocognitive Disorder.
Interventions
Observational data: The study will begin with a stage of data collection, associated with baseline (or initial) information gathering. This will involve researchers observing (watching) the behaviours of consented participants (individuals with MCD and/or care or support people) and recording behaviours (e.g., misremembering, indices of happiness and unhappiness, choice behaviour, vocal verbal responses) using pen and paper methods or unobtrusive technology (i.e., through the use of an iPad or similar) at various times. No specific actions will be required of participants at this stage. Baseline observational data will be collected during 10 to 20-minute periods at different times of the day across a between one and four weeks to capture the majority of behaviours, etc. Assessment (1): This stage will involve gathering information by asking informants (participants who support an individual with MCD, including whanau and/or staff) to comment on events and their perceptions of events. This will be achieved through a short (no longer than 20 minutes) interview (modality may vary depending on the preference of the research team and participants, i.e., online, in person, pen and paper survey). Assessment (2): This stage will involve brief assessments where the research team modifies the environmental stimuli (e.g., such as adding access to attention, or activities) and measures any change to behaviours of interest after the change. The assessments will comprise multiple sessions lasting no longer that 20 minutes, and have structured protocols and ending-session criteria to protect participants and to minimise disturbance of their time. The session-ending criteria will be yoked to the activity involved (e.g., physiotherapy session finishing) or will be a maximum of 20 min. A session may also be ended if behaviours of discomfort in the participant are observed. These will be determined in advance with each participant and their support people (e.g., walking away from the area, verbal aggression). This phase will occur after the completion of Assessment 1. Data-based decision making will be used, which means that the specific number of sessions and total duration will vary individual-by-individual. The predicted number of sessions is 3 to 20 per participant. Intervention (1): This element of the research will involve using information (gathered using methods listed above) to identify likely effective and best-practice intervention approaches that are matched to the reasons for misremembering behaviours and are minimally intrusive/promote quality of life. This stage will involve working with individuals with major neurocognitive disorder (MCD). These interventions will be yoked to data analysis, and so cannot be explicitly stated at this stage of the project, but may include: ignoring misremembering behaviour, redirecting misremembering behaviour, teaching participants to use another behaviour to have their needs met in place of misremembering, enriching the participant's lived environment, providing participants with choice of activities, and other empirically-supported evidence based treatments common in behaviour analytic intervention. Data collection through observation will continue at this stage. The changes implemented will be selected by the CI, using their clinical judgement and the data collected in the assessment phases (i.e., based on participant preferences, mobility, any medical contraindications, feasibility, available resource). Proposed changes will be presented to the organisation (i.e., their multi-disciplinary team) for their approval prior to implementation and to provide an additional check for safety and feasibility. The changes will be implemented by the CI (registered psychologist), supporting staff (e.g., occupational therapists, rehabilitation assistants), and other members of the research team. A researcher will interact with an individual participant in a shared space where other participants may be present, or in private quarters (depending on the change to be implemented). Sessions will be between 10 and 20-min in duration, implemented up to five times per week for up to 2 months. This stage will be implemented upon completion of the assessment phases. A second observer will be present in approximately 30% of sessions to record treatment integrity data. Intervention (2): This step of the study involves teaching and supporting consented care and support staff to modify the approaches they use when interacting with individuals they support, to reduce misremembering and increase behaviours that promote quality of life. Again, the specific intervention technologies will be tied to baseline data and specific to each participant, but may include the use of behavioural skills training (such as didactic instruction, modelling, rehearsal and feedback). Data will be collected at this stage through observation of consented participant behaviour (that of care support people and individuals with MCD). The teaching and support will be delivered by the research team and will include both analogue and in-situ components (i.e., in training rooms and during interactions with participants). This stage will be implemented upon completion of Intervention 1. Sessions will be between 10 and 30-min in duration and will be delivered up to 3 times per week for up to a month. A second observer will be present in approximately 30% of sessions to record treatment integrity data. Social validity: The perspectives and opinions of consented whanau, care and support people will be recorded using informant methods (as described in Assessment: 1). Care will be taken to minimise the response time and effort required for this task. Data will be analysed using quantitative and qualitative methods. Consented individuals with MCD may also be asked to provide their perspectives of participation through a modified tool, aligned with the cognitive skills of participants and in line with participant preference. The overall duration of the project for each participant is 6 months from enrolment to completion of final sessions.
Sponsors
Study design
Eligibility
Inclusion criteria
Group 1: People diagnosed with Major Neurocognitive Disorder (including dementia, brain injury) prior to participating in the study (i.e., have an existing, independent diagnosis) who engage in misremembering behaviour. Group 2. Whanau/ family members of participants with Major Neurocognitive Disorder. Group 3. Professional caregivers or support staff members who provide care to participants with Major Neurocognitive Disorder. .We do not have an inclusion criterion for age, as we wish to include individuals with young-onset dementia because this is likely to be beneficial for these groups and future research. However, participants must be over 16 years old in order to be included as a legal adult in NZ. We also do not have a criterion for specific diagnosis (e.g., type of dementia or brain injury). We are not seeking to make broad generalisations about people with a specific diagnosis, but start to understand some of the factors that should be considered in intervening upon remembering behaviour. As such, and due to our small-N design approach, we are not seeking an homogenous sample.
Exclusion criteria
People with major neurocognitive disorder who are unable to provide informed consent.