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

What are the benefits of activities that are tailored to the interests and preferences of people with dementia living in care homes

What was studied in this review?

People with dementia living in nursing or residential homes often have too little to do. Activities which are available may not be meaningful to them. If a person with dementia has the chance to take part in activities which match his or her personal interests and preferences, this may lead to a better quality of life, may reduce behaviours sometimes described as agitation (such as restlessness or aggression), and may have other positive effects.

What did we want to find out?

We aimed to investigate the effects of offering people with dementia who were living in care homes activities tailored to their personal interests. This review updates our previous review from 2018.

What did we do?

We searched for trials that had offered an activity programme to people with dementia based on their individual interests (an intervention group) and had compared them with other participants who were not offered these activities (a control group).

We found 11 studies including 1071 people with dementia living in care homes. Ten of the studies were randomised controlled trials (RCTs), meaning that it was decided at random whether participants were in the intervention group or the control group. One study was not randomised, which puts it at higher risk of biased results. The people included in the studies had moderate or severe dementia, and almost all had some kind of agitation when the study started. The studies lasted from 10 days to nine months. In all the studies, the people in the intervention groups got an individual activity plan. Most of the activities took place in special sessions run by trained staff, but in two studies the nursing staff or family members were trained to provide the activities during the daily care routine (nursing staff) or during visits (family members). The activities actually offered in the different studies did not vary a lot, but the number of activity sessions per week and the duration of the sessions did vary.

In five studies, the control group got only the usual care delivered in care homes; in five studies, the control group got different activities that were not personally tailored; one study had both types of control group.

What did we find?

The quality of the trials and how well they were reported varied, and this affected our confidence in the results. Offering personally tailored activities to people with dementia living in care homes may slightly improve agitation. In two studies, staff members judged the quality of life of the people with dementia, but offering the activities may result in little to no difference in quality of life. Only two studies mentioned looking for harmful effects; none were reported.

Personally tailored activities may have little or no effect on the negative emotions expressed by the participants. We could not draw any conclusion about effects on the participants' positive emotions, mood, engagement (being involved in what is happening around them) or quality of sleep, because some of the studies did not use the most appropriate methods to carry out their investigations. None of the studies measured effects on the amount of medication participants were given, or effects on carers.

We concluded that offering activity sessions to people with moderate or severe dementia living in care homes may help to manage agitation.

What are the limitations of the evidence?

Our confidence in the results was limited because of the small number of studies and because the studies did not always use the most appropriate methods to carry out their investigations. For example, in some studies it was not clear if they assigned people randomly to the study groups.

How up to date is this evidence?

This review updates our previous review, and the evidence is current to 15 June 2022.

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.

Read the full 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 strategy: 

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.