Objective: To investigate participant adherence and engagement to a home-based, companion-guided cognitive stimulation therapy adapted for people with Parkinsonian dementias (CST-PD).

Background: Adherence to rehabilitation programmes can be challenging. Over half of people with long-term conditions do not successfully adhere to recommended treatments. To foster adherence and engagement with a new home-based psychosocial therapy for Parkinson’s disease dementia (PDD) or dementia with Lewy bodies DLB), we specifically designed the therapy to be flexible, adaptable and of low intensity compatible with lifestyles and limitations of the therapy participants.

Methods: Using participant feedback diaries, we assessed therapy adherence, engagement and reach in people with PDD or DLB and their study companions recruited to the intervention arm of an ongoing single blind pilot trial of the feasibility and effectiveness of CST-PD. Companions received training to deliver the protocol-guided therapy and were asked to complete 3 x 30 minute therapy sessions with the affected participant each week. Measures included frequency of use, duration of each session and satisfaction with the therapy.  A post-therapy interview explored barriers and facilitators to implementing the therapy in the recommended way.

Results: Interim analysis of participants who have completed the therapy intervention found that 54% of the recommended number of sessions were completed with a mean of 1.8 (SD 0.8) sessions each week, which falls short of the recommended dose. 63% (563.0 minutes) of the recommended total session duration (900 minutes) was completed with a mean of 34.0 (SD 5.0) minutes/session. Not all participants completed therapy each week, however, the dose was exceeded in sessions that were completed. Barriers to adherence included: ill health, availability of companion, and competing commitments, although participants appreciated the flexibility of the intervention and the opportunity to involve other family members and friends. The relation of duration and frequency of use to indices of outcome are being explored.

Conclusions: The complex needs of the person with Parkinsonian dementia and their companion challenges adherence and may compromise therapy reach and, ultimately, efficacy. This suggests the need for flexibility and extra support during implementation.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/a-new-psychosocial-intervention-for-people-with-parkinsonian-dementias-adherence-barriers-and-facilitators/