Personally tailored activities for improving psychosocial outcomes for people with dementia in long-term care

Abstract

Background: People with dementia who are being cared for in long-term care settings are often not engaged in meaningful activities. We wanted to know whether offering them activities which are tailored to their individual interests and preferences could improve their quality of life and reduce agitation. This review updates our earlier review published in 2018. Objectives: ∙ To assess the effects of personally tailored activities on psychosocial outcomes for people with dementia living in long-term care facilities. ∙ To describe the components of the interventions. ∙ To describe conditions which enhance the effectiveness of personally tailored activities in this setting. Search methods: We searched the Cochrane Dementia and Cognitive Improvement Group’s Specialized Register, on 15 June 2022. We also performed additional searches in MEDLINE, Embase, PsycINFO, CINAHL, Web of Science, ClinicalTrials.gov, and the World Health Organization (WHO) ICTRP, to ensure that the search for the review was as up-to-date and as comprehensive as possible. Selection criteria: We included randomised controlled trials (RCTs) and controlled clinical trials offering personally tailored activities. All interventions included an assessment of the participants' present or past preferences for, or interest in, particular activities as a basis for an individual activity plan. Control groups received either usual care or an active control intervention. Data collection and analysis: Two authors independently selected studies for inclusion, extracted data and assessed the risk of bias of included studies. Our primary efficacy outcomes were agitation and participant quality of life. Where possible, we pooled data across studies using a random effects model. Main results: We identified three new studies, and therefore included 11 studies with 1071 participants in this review update. The mean age of participants was 78 to 88 years and most had moderate or severe dementia. Ten studies were RCTs (three studies randomised clusters to the study groups, six studies randomised individual participants, and one study randomised matched pairs of participants) and one study was a non-randomised clinical trial. Five studies included a control group receiving usual care, five studies an active control group (activities which were not personally tailored) and one study included both types of control group. The duration of follow-up ranged from 10 days to nine months. In nine studies personally tailored activities were delivered directly to the participants. In one study nursing staff, and in another study family members, were trained to deliver the activities. The selection of activities was based on different theoretical models, but the activities delivered did not vary substantially. We judged the risk of selection bias to be high in five studies, the risk of performance bias to be high in five studies and the risk of detection bias to be high in four studies. We found low-certainty evidence that personally tailored activities may slightly reduce agitation (standardised mean difference −0.26, 95% CI −0.53 to 0.01; I² = 50%; 7 studies, 485 participants). We also found low-certainty evidence from one study that was not included in the meta-analysis, indicating that personally tailored activities may make little or no difference to general restlessness, aggression, uncooperative behaviour, very negative and negative verbal behaviour (180 participants). Two studies investigated quality of life by proxy-rating. We found low-certainty evidence that personally tailored activities may result in little to no difference in quality of life in comparison with usual care or an active control group (MD -0.83, 95% CI -3.97 to 2.30; I² = 51%; 2 studies, 177 participants). Self-rated quality of life was only available for a small number of participants from one study, and there was little or no difference between personally tailored activities and usual care on this outcome (MD 0.26, 95% CI −3.04 to 3.56; 42 participants; low-certainty evidence). Two studies assessed adverse effects, but no adverse effects were observed. We are very uncertain about the effects of personally tailored activities on mood and positive affect. For negative affect we found moderate-certainty evidence that there is probably little to no effect of personally tailored activities compared to usual care or activities which are not personalised (standardised mean difference -0.02, 95% CI −0.19 to 0.14; 6 studies, 632 participants). We were not able to undertake meta-analyses for engagement and sleep-related outcomes, and we are very uncertain whether personally tailored activities have any effect on these outcomes. Two studies that investigated the duration of the effects of personally tailored activities indicated that the intervention effects they found persisted only during the period of delivery of the activities. Authors' conclusions: Offering personally tailored activities to people with dementia in long-term care may slightly reduce agitation. Personally tailored activities may result in little to no difference in quality of life rated by proxies, but we acknowledge concerns about the validity of proxy ratings of quality of life in severe dementia. Personally tailored activities probably have little or no effect on negative affect, and we are uncertain whether they have any effect on positive affect or mood. There was no evidence that interventions were more likely to be effective if based on one theoretical model rather than another. We included three new studies in this updated review, but two studies were pilot trials and included only a small number of participants. Certainty of evidence was predominately very low or low due to several methodological limitations of and inconsistencies between the included studies. Evidence is still limited, and we remain unable to describe optimal activity programmes. Further research should focus on methods for selecting appropriate and meaningful activities for people in different stages of dementia.