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

Background

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 challenging behaviour such as restlessness or aggression, and may have other positive effects.

Purpose of this review

We wanted to investigate the effects of offering people with dementia who were living in care homes activities tailored to their personal interests.

Studies included in the review

In June 2017 we searched for trials that had offered some participants an activity programme 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 eight studies including 957 people with dementia living in care homes. Seven 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 number of participants included in the studies ranged from 25 to 180. They all had moderate or severe dementia and almost all had some kind of challenging behaviour 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 one study, the nursing staff were trained to provide the activities during the daily care routine. 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 three studies, the control group got different activities that were not personally tailored; one study had both types of control group.

The quality of the trials and how well they were reported varied, and this affected our confidence in the results.

Key findings

Offering personally tailored activities to people with dementia living in care homes may slightly improve challenging behaviour when compared with usual care, although we did not find evidence that it was any better than offering activities which were not personally tailored. In one study, staff members reported that people in the group receiving personally tailored activities had a slightly worse quality of life than the control group. Personally tailored activities may have little or no effect on the negative emotions expressed by the participants. Because the quality of some of the evidence was very low, we could not draw any conclusions about effects on the participants' positive emotions, mood, engagement (being involved in what is happening around them) or quality of sleep. Only two studies mentioned looking for harmful effects; none were reported. None of the studies measured effects on the amount of medication participants were given, or effects on carers.

Conclusions

We concluded that offering activity sessions to people with moderate or severe dementia living in care homes may help to manage challenging behaviour. However, we did not find any evidence to support the idea that activities were more effective if they were tailored to people's individual interests. More research of better quality is needed before we can be certain about the effects of personally tailored activities.

Authors' conclusions: 

Offering personally tailored activities to people with dementia in long-term care may slightly improve challenging behaviour. Evidence from one study suggested that it was probably associated with a slight reduction in the quality of life rated by proxies, but may have little or no effect on self-rated quality of life. We acknowledge concerns about the validity of proxy ratings of quality of life in severe dementia. Personally tailored activities may have little or no effect on negative affect and we are uncertain whether they improve positive affect or mood. There was no evidence that interventions were more likely to be effective if based on one specific theoretical model rather than another. Our findings leave us unable to make recommendations about specific activities or the frequency and duration of delivery. 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. Offering them activities which are tailored to their individual interests and preferences might improve their quality of life and reduce challenging behaviour.

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 ALOIS, the Cochrane Dementia and Cognitive Improvement Group’s Specialized Register, on 16 June 2017 using the terms: personally tailored OR individualized OR individualised OR individual OR person-centred OR meaningful OR personhood OR involvement OR engagement OR engaging OR identity. We also performed additional searches in MEDLINE (Ovid SP), Embase (Ovid SP), PsycINFO (Ovid SP), CINAHL (EBSCOhost), Web of Science (ISI 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 and controlled clinical trials offering personally tailored activities. All interventions included an assessment of the participants' present or past preferences for, or interests 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 checked the articles for inclusion, extracted data and assessed the methodological quality of included studies. For all studies, we assessed the risk of selection bias, performance bias, attrition bias and detection bias. In case of missing information, we contacted the study authors.

Main results: 

We included eight studies with 957 participants. The mean age of participants in the studies ranged from 78 to 88 years and in seven studies the mean MMSE score was 12 or lower. Seven studies were randomised controlled trials (three individually randomised, parallel group studies, one individually randomised cross-over study and three cluster-randomised trials) and one study was a non-randomised clinical trial. Five studies included a control group receiving usual care, two studies an active control intervention (activities which were not personally tailored) and one study included both an active control and usual care. Personally tailored activities were mainly delivered directly to the participants; in one study the nursing staff were trained to deliver the activities. The selection of activities was based on different theoretical models but the activities did not vary substantially.

We found low-quality evidence indicating that personally tailored activities may slightly improve challenging behaviour (standardised mean difference (SMD) −0.21, 95% confidence interval (CI) −0.49 to 0.08; I² = 50%; 6 studies; 439 participants). We also found low-quality 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). There was very little evidence related to our other primary outcome of quality of life, which was assessed in only one study. From this study, we found that quality of life rated by proxies was slightly worse in the group receiving personally tailored activities (moderate-quality evidence, mean difference (MD) −1.93, 95% CI −3.63 to −0.23; 139 participants). Self-rated quality of life was only available for a small number of participants, and there was little or no difference between personally tailored activities and usual care on this outcome (low-quality evidence, MD 0.26, 95% CI −3.04 to 3.56; 42 participants). We found low-quality evidence that personally tailored activities may make little or no difference to negative affect (SMD −0.02, 95% CI −0.19 to 0.14; I² = 0%; 6 studies; 589 participants). We found very low quality evidence and are therefore very uncertain whether personally tailored activities have any effect on positive affect (SMD 0.88, 95% CI 0.43 to 1.32; I² = 80%; 6 studies; 498 participants); or mood (SMD −0.02, 95% CI −0.27 to 0.23; I² = 0%; 3 studies; 247 participants). We were not able to undertake a meta-analysis for engagement and the sleep-related outcomes. We found very low quality evidence and are therefore very uncertain whether personally tailored activities improve engagement or sleep-related outcomes (176 and 139 participants, respectively). Two studies that investigated the duration of the effects of personally tailored activities indicated that the intervention effects persisted only during the delivery of the activities. Two studies reported information about adverse effects and no adverse effects were observed.

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