The facilitators and barriers to improving functional activity and wellbeing in people with dementia: A qualitative study from the Process Evaluation of Promoting Activity, Independence and Stability in Early Dementia

Abstract

Background. The PRomoting Activity, Independence and Stability in Early Dementia (PrAISED) study delivered an exercise and functional activity programme to participants living with dementia. A Randomised Controlled Trial (RCT) showed no measurable benefits in activities of daily living, physical activity or quality of life. Objective. To explore participant responses to PrAISED and explain the mechanisms behind a complex intervention that did not lead to expected health gains. Methods. A process evaluation using qualitative methods, comprising interviews and researcher notes Setting. Data were collected in the homes of participants or remotely by telephone or videoconferencing. Sample. Eighty-eight interviews were conducted with 44 participants living with dementia (n = 32 intervention group; n = 12 control group) and 39 caregivers. Sixty-nine interviews were conducted with 26 therapists. Results. Participants valued the intervention as proactively addressing health issues that were of concern to them, and as sources of social contact, interaction, information, and advice. Facilitators to achieving positive outcomes included perceiving progress toward desired goals, positive expectations, therapist skills and rapport with participants, and caregiver support. Barriers included: cognitive impairment, which prevented independent engagement and carryover between sessions; chronic physical health problems and intercurrent acute illness and injury; tapering (progressively infrequent supervision intended to help develop habits and independent activity); and the COVID-19 pandemic. Conclusions. Interventions aiming to maintain activity, independence and stability may not be appropriate in the context of dementia even in the mild stages of the condition. Various factors affected outcomes including caregiver support, rapport with therapists, availability of supervision, motivational factors, and the limitations of remote delivery. The effects of cognitive impairment, multimorbidity and frailty overwhelmed any positive impact of the intervention. Maintenance of functional ability is valued, but in the face of inevitable progression of disease, other less tangible outcomes become important, challenging how we frame health gain and trial outcomes.

Promoting Activity, Independence and Stability in early dementia and mild cognitive impairment (PrAISED): A randomised controlled trial

“…Our attrition and missing data rates were acceptable. In qualitative interviews, undertaken as part of the process evaluation, the trial intervention was overwhelmingly well-received by participants, carers and provider staff [80].…”

“…We undertook a process evaluation following Medical Research Council (MRC) guidelines [77-80]. We investigated reach, dose, fidelity and adaptations of training and intervention delivery.…”

“…We undertook a process evaluation following Medical Research Council (MRC) guidelines [77][78][79][80].…”

“…This does not mean that intervention may not have benefit in the psycho-social domain, including affirming personhood, inclusion, occupation, relationships, or carer support. Aspects such as social engagement, concern, hope, goal-achievement, information-giving (on a range of dementia-related topics), and therapeutic relationship-building appear to have been greatly valued [80]. In palliative care and mental health, therapeutic relationships are valued in their own right; the exercise may have been a means to an end.…”

Promoting Activity, Independence, and Stability in Early Dementia and mild cognitive impairment (PrAISED): randomised controlled trial

“…We undertook a process evaluation in accordance with Medical Research Council guidelines 77787980. Reach, dose, fidelity, and adaptations of training and intervention delivery were investigated (supplementary appendix 2).…”