None listed
Conditions
Brief summary
Preference assessments are a tool used to gather information about what people living with dementia like to do. They are useful because they do not require speech to participate, meaning that more people have a voice in their care. We are seeking ways to make them more acceptable and more effective for people with dementia, by including people with dementia, their whanau and carers to have a say in what might improve the use of these tools in clinical practice.
Interventions
We are collecting baseline data of a) the preferences of participants with dementia and b) indices of happiness of participants living with dementia in order to measure the effectiveness and acceptability of conducting a traditional preference assessment with people living with dementia. After we have collected baseline data and have gathered information from the survey sent out to behaviour analysts on different experiences and challenges of conducting preference assessments with people living
We are collecting baseline data of a) the preferences of participants with dementia and b) indices of happiness of participants living with dementia in order to measure the effectiveness and acceptability of conducting a traditional preference assessment with people living with dementia. After we have collected baseline data and have gathered information from the survey sent out to behaviour analysts on different experiences and challenges of conducting preference assessments with people living with dementia, we will run the preference assessment again with the same participants but with the adapted changes. This is an intervention as we are measuring the difference between the baseline (standard) preference assessment and the adapted preference assessment for people living with dementia, in order to test whether these adaptions make the preference assessment more acceptable, effective and socially valid for this group population. Survey (professional care givers and whanau): Professional caregivers and whanau will be given a social validity survey in paper form to fill out before the beginning of the project, after the first preference assessment and after the second preference assessment. The social validity survey will be multiple choice and take approximately 5-10 minutes to complete. (Phase 1): Preference assessment (participants living with dementia): During the baseline session, participants with major neurocognitive disorder will participate in a preference assessment used to assess the participants preference of food, objects and activities. This preference assessment may be multiple stimulus with- or without replacement (MSW/MSWO), paired stimulus, or free-operant, depending on the individual participant. The participant will be instructed by the researcher to choose between the options available, and make their preference of the options. Or in the case of the free-operant preference assessment, researchers will be observing the participants interaction with different objects food or activities. The baseline sessions will be approximately 30 minutes, and there will be one to four baseline sessions conducted with each participant (no more than two sessions a day). The number of sessions will be determined through data-based decision making of the repeated measures data.. We will analyse the data after every session, looking specifically at variability and richness of the data (e.g., stability of preference, the number and topography of vocalisations). The more variable the data, the more likely we are to conduct another session (up to the maximum number). Two or more sessions of this phase is preferable to one, but one is acceptable. The baseline conditions will run for approximately 4 weeks. These sessions will occur in where the person lives (i.e., the care home). Procedural integrity will be measured in approximately 30% of sessions by a second observer. They will record integrity (adherence) based on a task analysis (a list of the investigator behaviours in which we will engage in each session). (Phase 2): Adapted preference assessment (participants with dementia): We will conduct adapted preference assessments with the participants involved, through cooperation with behaviour analysts, professional carers and whanau through social validity surveys and questionnaires. Adaptations will be individualised for each participant. The participants will undergo another preference assessment, however, this time it is adapted to measure the effect on different indices of happiness and effectiveness of the procedure. The participants will again be given options of preferred items, food or activities, same as in baseline condition, however with the adaptions made to the procedure by the experimenters. Examples of adaptations include providing more or fewer options; having a support person present to assist the preference process, conducting the sessions in a different location, changing the language used to present the items etc. .These sessions will also be approximately 30 minutes, and there will be one to four adapted preference assessments per participant (no more than two sessions a day). The number of sessions will be determined through data-based decision making of the repeated measures data.. We will analyse the data after every session, looking specifically at variability and richness of the data (e.g., stability of preference, the number and topography of vocalisations). The more variable the data, the more likely we are to conduct another session (up to the maximum number). Two or more sessions of this phase is preferable to one, but one is acceptable. This adapted preference assessment phase will run for approximately 4 weeks. Procedural integrity will be measured in approximately 30% of sessions by a second observer. They will record integrity (adherence) based on a task analysis (a list of the investigator behaviours in which we will engage in each session). (Phase 3): Participants living with dementia will continue to take part in the two preference assessment phases, alternating randomly between the two. This phase will involve the same participants as in Phases 1 and 2. Preference assessments will continue to be 30 minute long, one to four sessions per week (no more than two sessions a day). These will run for up to 15 weeks and we will run between 5-15 sessions per participant. The number of sessions will be determined through data-based decision making of the repeated measures data.. We will analyse the data after every session, looking specifically at variability and richness of the data (e.g., stability of preference, the number and topography of vocalisations). The more variable the data, the more likely we are to conduct another session (up to the maximum number). This specific design is called an alternating treatments design. Procedural integrity will be measured in approximately 30% of sessions by a second observer. They will record integrity (adherence) based on a task analysis (a list of the investigator behaviours in which we will engage in each session). Participants will proceed to each subsequent phase immediately following completion of the previous phase.
Sponsors
The University of Auckland
Study design
Allocation
Non-randomised trial
Primary purpose
Treatment
Eligibility
Sex/Gender
All
Age
16 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
a) People living with mate wareware / dementia (independently diagnosed prior to the study). b) A whanau member of each person with mate wareware c) A professional carer / staff member for each person with mate wareware Therefore, we will be working with triads of participants, comprising and a), b), and c). It is possible that we may obtain consent from someone with dementia, but not a whanau member or professional carer. For each person with dementia, we require at least ONE of either b) or c) for inclusion in the study. . 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). 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 adapting preference assessments. As such, and due to our small-N design approach, we are not seeking an homogenous sample.
Exclusion criteria
None
Outcome results
None listed