Enhancing Therapies for People with Dementia

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 dementia and/or care or support people) and recording behaviours (e.g., indices of affect, engagement, 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 dementia, including whanau and/or staff, the person with dementia themselves) to comment on the person's preferred therapies, hobbies, interests, and what is available in the home. 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 activities to determine which factors enhance their effectiveness (e.g., duration of the activity, the presence or absence of someone doing the activity alongside the person with dementia etc) and measure any change to behaviours of interest after the change. The purpose of this assessment is to identify which factors make the activities more preferred or effective in increasing engagement. The assessments will comprise multiple sessions lasting no longer than 20 minutes, and have structured protocols and ending-session criteria to protect participants and to minimise disturbance of their time. This phase will occur after the completion of Assessment 1. The changes implemented will be selected by the CI, using their clinical judgement and the data collected in Assessment 1 (i.e., based on participant preferences, mobility, any medical contraindications, feasibility, available resource). Proposed changes will be presented to the organisation for their approval prior to implementation and to provide an additional check for safety and feasibility (for example, we will not suggest a change in location of a therapy for a participant whose mobility would make it unsafe to move them to another room in the space). he 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. The changes implemented will only be made for the individual participant (i.e., not others in the organisation, even if the activity is available to them as well). Some examples are: 1. Changes to the therapy materials: • The participant is presented with games available in the setting and new games to evaluate whether new games are more desirable due to their novelty. • A button on the radio is made more obvious so that the participant can change the music during music therapy rather than someone else doing it for them. • Written text is added to memory books to evaluate whether it helps the person to recall events and people more accurately. 2. Changes to the way the therapy is presented: • The participant is provided with written prompts or a ‘cheat sheet’ to help them understand how to play a game. • The participant is shown how to play with a particular toy and the dog to evaluate whether they enjoy this more than more passive interactions with the dog such as petting. • Regular ‘check-ins’ are added to doll therapy, by which the participant is provided with regular social interactions from others while they have the doll in their lap. Intervention (1): 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 increase participation and engagement in therapies. 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 dementia). 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 dementia 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.