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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 (PrAISED)

Lorito, Claudio Di; Van Der Wardt, Veronika; Pollock, Kristian; Howe, Louise; Booth, Vicky; Logan, Pip; Gladman, John; Masud, Tahir; Das Nair, Roshan; Goldberg, Sarah; Vedhara, Kavita; O'Brien, Rebecca; Adams, Emma; Cowley, Alison; Bosco, Alessandro; Hancox, Jennie; Burgon, Clare; Bajwa, Rupinder; Lock, Juliette; Long, Annabelle; Godfrey, Maureen; Dunlop, Marianne; Harwood, Rowan H.

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 (PrAISED) Thumbnail


Authors

Claudio Di Lorito

Veronika Van Der Wardt

Louise Howe

PIP LOGAN pip.logan@nottingham.ac.uk
Professor of Rehabilitation Research

John Gladman

Tahir Masud

ROSHAN NAIR Roshan.dasnair@nottingham.ac.uk
Professor of Clinical Psychology and Neuropsychology

SARAH GOLDBERG sarah.goldberg@nottingham.ac.uk
Professor of Older Peoples' Care

Kavita Vedhara

Alison Cowley

Alessandro Bosco

Jennie Hancox

Clare Burgon

Juliette Lock

Maureen Godfrey

Marianne Dunlop



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 participants’ responses to PrAISED and explain why an intervention that might be expected to have produced measurable health gains did not do so.
Methods. A process evaluation using qualitative methods, comprising interviews and researcher notes.
Setting. Data were collected in participants’ homes 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, therapists’ 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. Self-directed interventions may not be appropriate in the context of dementia, even in the mild stages of the condition. Dementia-specific 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.

Journal Article Type Article
Acceptance Date Jul 5, 2023
Online Publication Date Aug 20, 2023
Publication Date Aug 20, 2023
Deposit Date Jul 17, 2023
Publicly Available Date Aug 21, 2024
Journal Age and Ageing (Deleted)
Electronic ISSN 1468-2834
Peer Reviewed Peer Reviewed
Volume 52
Issue 8
Article Number afad166
DOI https://doi.org/10.1093/ageing/afad166
Public URL https://nottingham-repository.worktribe.com/output/23205795
Publisher URL https://academic.oup.com/ageing/article/52/8/afad166/7246467?login=false

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