ACT for People With Dementia Experiencing Psychological Distress

Summary

Participation Requirements

Description

The study will involve a small case series of up to six participants (three people with dementia and up to three caregivers depending on the person with dementia's preference), meaning the PI will be able to track on an individual level. Individuals who express interest will be contacted by the stud...

The study will involve a small case series of up to six participants (three people with dementia and up to three caregivers depending on the person with dementia's preference), meaning the PI will be able to track on an individual level. Individuals who express interest will be contacted by the student via telephone or email. The PI will provide information pertaining to all aspects of study participation prior to recruitment. Procedure & Intervention Content, Part 1: As part of the practitioner-researcher model, the PI will be delivering the ACT intervention following the completion of ACT training and pre-adaptational work for use with people with dementia. Verbal information may be supported by visual aids and written information to support retention and reminders of any between-session tasks. Although there is no specific protocol for ACT with dementia, a published ACT protocol, 'Better Living with Illness' (Brassington et al., 2016), will be used flexibly to guide the intervention. The HSCED will include baseline and intervention phases. As participants will be recruited to the study at different times, baseline lengths will vary. This may strengthen the design by reducing the possibility of any observed changes being attributed to time-based effects (after a duration of monitoring). The intervention will be delivered on an individual basis for up to 90-minute, weekly sessions. There will be a standard number of up to 12, but this will be reviewed at session six. At the beginning of each therapy session, the PI will offer introductions, provide reminders about the purpose of the study, confidentiality and its limits and gain verbal consent to proceed. Reported changes will also be captured at the beginning of each session, for example, 'checking-in' with participants and inviting them to share any reflections on therapy or changes they have noticed between sessions. ACT fidelity will be assessed by the PI using the ACT Fidelity Measure (O'Neill, Latchford, McCracken & Graham, 2019). The ACT-FM is a 25-item coding system that captures depth and frequency of coverage of major ACT components and non-adherent components through four main areas within ACT; Therapist Stance, Open Response Style, Aware Response Style and Engaged Response Style. At baseline (first session), last session and at 1 and 3-month follow-ups, participants (people with dementia) will complete self-report measures of anxiety (with the GAD-7) and depression (with the PHQ-9). At each session and at 1 and 3 month follow-ups, they will also complete measures of wellbeing (Short Warwick-Edinburgh Mental Wellbeing Scale; SWEMWS), personal problems (Personal Questionnaire; PQ), psychological flexibility (Comprehensive Assessment of Acceptance and Commitment Therapy Processes; CompACT-SF) and a measure of relational process (Session Rating Scale; SRS) to support their rich case record and provide data on the quality of the therapeutic alliance as a rival hypothesis for interventional change. It will be considered whether any of these measures could be completed by the PI from session recordings to try to reduce participant burden. Part 2: One week post-therapy, a semi-structured Change Interview will be conducted with participants and their caregivers together by an independent researcher to obtain their views about their experience of therapy, including change processes, consideration of what they attribute change to and what may have enabled or hindered change, if change occurred. These will likely take place at a room at one of the universities, location convenient for the participant or remotely via telephone or videocall. The interviews will be audio-recorded with a digital dictation device for later transcription by the student to contribute to the rich case record of each participant. Practical Aspects: Due to COVID-19, there will be two options for intervention delivery: (A) face-to-face as planned; or (B) remotely via telephone or videocall. In Option A, the PI will offer flexibility regarding the location and time of the ACT intervention. It is understood that people with dementia are often marginalised, therefore the PI will make efforts to travel to them and make any reasonable adjustments. Participants may be telephoned to prompt or remind them of the therapy start time if necessary. Location options will include participants' homes, NHS site or University premises, depending on the preferences of the participant. All therapy sessions will be conducted in accordance with the University of Nottingham's (UoN) and respective NHS Trust's Lone Working Policies. The attendance of caregivers at therapy sessions will be negotiated with the participant. There is an acknowledgement of caregivers' likely role in transporting and accompanying participants to their appointments. All attendees (PI, participant and caregiver) will be required to wear Personal Protective Equipment (PPE) and adhere to social distancing measures in accordance with COVID-19 restrictions. In Option B, the PI will negotiate an appropriate appointment time (between 9am-5pm on weekdays) to conduct the intervention. Again, the attendance of caregivers at therapy sessions will be negotiated with the participant. There is an acknowledgement that caregivers may prompt or support clients with between session tasks. Caregivers will also be invited to Change Interviews following the completion of therapy. The Change Interviews will involve asking participants about their experience of the therapy, what they found helpful and less helpful, any improvements that could be made and asking both participants and carers whether they have noted any changes in wellbeing or functional ability over the intervention period. All therapy sessions will be audio-recorded with an encrypted, digital dictation device for storage and later transcription for quality and ACT fidelity checks. This will be clarified on the Participant Information Sheet and at the beginning of each therapy session. The PI will also take written notes.

Tracking Information