Description of the condition
About six million people are currently affected by dementia in Europe (Ferri 2005; Wittchen 2011). The majority of people with dementia live in their own homes, either alone or with others (Gitlin 2008; Phinney 2007). Some attend community-based services such as day centres, which offer activities and provide caregivers with regular short-term respite from care (Brataas 2010; Mossello 2008). Living in their own familiar environment may enable people with dementia to maintain their social networks and enjoy a better quality of life (Luppa 2008).
People with dementia experience a progressive cognitive and functional decline, limiting their ability to perform activities and to communicate. Furthermore, more than 80% of people with dementia living in the community may experience at least one behaviour which is challenging for the caregivers, such as apathy, delusions or aggressiveness (Cheng 2009; Shaji 2009), and up to 50% may experience depression (Lyketsos 2004).
Meaningful daytime activities have been identified as unmet needs of people with dementia living in the community (Johnston 2011; Meaney 2005; Miranda-Castillo 2011). People with impaired cognitive function have fewer social interactions and participate less in activities, both in the community (Holtzman 2004; Krueger 2009) and in long-term care facilities (Chen 2000; Dobbs 2005). This lack of participation in structured or social activities may increase the risk of challenging behaviours related to dementia (Cohen-Mansfield 2011).
People with dementia have expressed their wish to be involved in meaningful activities that meet their interests (Phinney 2007; Vernooij-Dassen 2007). Engaging persons with dementia in personally-tailored activities may not only contribute to meeting their unmet needs, but may also have positive effects on their challenging behaviours and quality of life. These benefits might positively influence caregivers' burden and well-being. Personally-tailored activities could be beneficial irrespective of the severity of dementia, since a significant sense of self-identity can persist until advanced stages (Cohen-Mansfield 2006; Hubbard 2002; Mills 1997).
Description of the intervention
Interventions offering personally-tailored activities to people with dementia in community settings are considered to be 'complex interventions'. They offer different types of activities based on different models or frameworks, and vary in how the interventions are provided and in the number of possible outcomes (Craig 2008).
For this review, activity is conceived in terms of occupation, i.e. pursuits that typically extend over time, have meaning to the performer, and can involve multiple tasks (Christiansen 2005, p. 548). Activities should be personally-tailored, which means that their object should be chosen after assessing the individual preferences or interests of the participants, and could also be adapted to their cognitive and functional status (Cohen-Mansfield 2009b).
Interventions can be based on specific models or concepts, e.g. the principles of Montessori or the concept of person-centred care. We will include interventions aiming to improve psychosocial aspects such as challenging behaviours or quality of life of people with dementia. Those interventions exclusively aiming to improve the cognitive function or other particular skills (e.g. communication, basic activities of daily living) will be excluded. We expect a wide range of activities to be offered, including instrumental activities of daily living (e.g. housework, preparing a meal), arts and crafts (e.g. painting, singing), work-related tasks (e.g. gardening), and recreational activities (e.g. games). Interventions can be delivered at the participant’s home or in community-based services (e.g. day centres), in groups or individually. Duration and frequency of the sessions can differ, and expected providers of the interventions include various professionals or a multidisciplinary team. An informal caregiver can also provide the intervention if he or she has been trained to do it.
How the intervention might work
Being involved in personally-tailored activities may engender positive emotions such as interest and feelings of engagement, and decrease challenging behaviours (Cohen-Mansfield 2007; Farina 2006; Harmer 2008; Phinney 2007). The generation of positive emotions could function as a resource for the management of stress and regulate a range of negative emotions (Fredrickson 2000) such as feelings of boredom, loneliness (Cohen-Mansfield 2009a), non-meaningfulness, frustration or distress (Steeman 2006). Benefits might also arise because personally-tailored activities could facilitate the evocation of autobiographical events (Guétin 2009), preserve the identity of people with dementia (Harmer 2008), fulfil individual occupational needs not covered due to the debilitating effects of dementia (Kitwood 1992), and enhance the use of remaining abilities.
Participation in personally-tailored activities may improve quality of life of people with dementia by improving their challenging behaviours and giving them the possibility to participate in activities (Burgener 2002; de Boer 2007; Ryu 2011). Other positive effects can be improvement or maintenance of functional or cognitive abilities (Guétin 2009), and reduction of the prescription of psychotropic medication.
Expected benefits for caregivers are decrease in their burden of care, which has been associated with challenging behaviours of the person with dementia (Rocca 2010), and improvement of their psychological well-being. Caregivers might also experience an increased sense of competence by participating in the planning or administration of personally-tailored activities to the person with dementia.
Why it is important to do this review
Few studies have evaluated complex interventions offering personally-tailored activities for people with dementia in community settings (e.g. Cohen-Mansfield 2006; Gitlin 2008). Since most people with dementia live in their own homes, information on effective interventions engaging these people in such activities is needed. So far, no systematic review has evaluated the effects of interventions offering personally-tailored activities for people with dementia in community settings. Due to the expected variation and complexity of the included interventions, this review will describe not only their effects but also their characteristics (e.g. components, intensity and performance). Information on the implementation fidelity will be incorporated, e.g. exposure, quality of delivery, participants’ responsiveness and adherence (Shepperd 2009). The results of this review will provide valuable information for making decisions on the implementation of available activity programmes and for developing new complex interventions aiming to improve psychosocial outcomes for people with dementia living in community settings.
- To assess the effects of interventions offering personally-tailored activities for improving psychosocial outcomes for people with dementia in community settings.
- To describe clearly the components of the included interventions.
- To describe conditions and prerequisites which are likely to enhance the effectiveness of interventions offering personally-tailored activities for improving psychosocial outcomes.
Criteria for considering studies for this review
Types of studies
We will include individual and cluster-randomised controlled trials, controlled clinical trials and controlled before-after studies.
Types of participants
We will include people with dementia living in community settings, including people living in their own homes and attending daytime facilities such as day centres. We will exclude people living in institutions which offer 24-hour care. We will include people with different types and stages of dementia.
Types of interventions
We will include all interventions offering personally-tailored activities for improving psychosocial outcomes for people with dementia living in community settings. The underlying understanding of a personally-tailored activity is the same as in a corresponding Cochrane Review dealing with the long-term care facilities’ setting (Möhler 2012). All interventions should comprise the following elements:
- An assessment of the person with dementia’s present or past preferences for particular activities or interests. We expect unstructured forms of assessment, e.g. asking about the interests of the person with dementia, as well as the use of validated tools, e.g. the self-identity questionnaire (Cohen-Mansfield 2010) or the NEO-FFI (Kolanowski 2005). In the later stages of dementia, next-of-kin or health professionals might provide this information.
- An activity plan tailored to the individual participant and based on the assessment performed, which can be adapted to the participant’s cognitive and functional status (Cohen-Mansfield 2009b). The aim of the intervention does not necessarily include the improvement of a particular skill. A range of different types of activities should be available. Activities belonging to different areas are expected: instrumental activities of daily living (e.g. housework, preparing a meal), arts and crafts (e.g. painting, singing), work-related tasks (e.g. gardening), and recreational activities (e.g. games). Different professionals can provide the intervention, e.g. nurses, occupational therapists, social workers or psychologists. The intervention can be performed either in a group or individually, and may be offered directly to people with dementia or to their caregivers, who should subsequently impart the intervention. The intervention can take place either in the participant’s home or in community-based services (e.g. day care centres).
We will exclude interventions if: 1) they do not include an assessment of the preferences or interests of the person with dementia; 2) they comprise only one specific type of activity such as music or reminiscence (which might not address the interests of all participants); 3) they are multi-component interventions of overall approaches to care that include activity prescription; or 4) they aim exclusively at improving the cognitive function or other particular skills (e.g. communication, basic activities of daily living).
Comparison: Other types of psychosocial interventions, placebo interventions (e.g. unspecific personal attention), usual or optimised usual care. For studies without an active control, we will perform a sensitivity analysis to estimate their influence on the results (see Sensitivity analysis).
Types of outcome measures
All of the included studies should report psychosocial outcomes in people with dementia, preferably evaluated by validated and reliable assessments.
- Behaviour such as aggression, apathy, wandering or inappropriate sexual contact that is challenging to relatives or caregivers, whether this behaviour is a response to the person's environment or the result of dementia-related symptoms, e.g. assessed by Behave-AD, Cohen-Mansfield Agitation Inventory (CMAI).
- Depression or anxiety, e.g. assessed by the Cornell Scale for Depression in Dementia.
- Quality of Life, e.g. assessed by Dementia Care Mapping, EuroQol (EQ-5D).
People with dementia
- Affect (i.e. expression of emotion), e.g. assessed by Observed Emotion Rating Scale.
- Level of engagement, e.g. assessed by Observational Measurement of Engagement Assessment, Index of Social Engagement.
- Cognitive status, e.g. assessed by Mini-Mental Status Examination.
- Functional status, e.g. assessed by Functional Living Skills Assessment.
- Other dementia-related symptoms such as sleep disturbances, hallucinations or delusions, e.g. assessed by Neuropsychiatric Inventory (NPI).
- Psychotropic medication.
- Adverse effects of the interventions (e.g. injuries).
- Level of burden, e.g. assessed by Zarit Burden scale.
- Distress, e.g. assessed by Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D).
- Sense of competence, e.g. assessed by Sense of Competence Questionnaire (SCQ).
- Quality of Life and health status, e.g. assessed by the EQ-5D instrument.
- Depression or anxiety, e.g. assessed by General Health Questionnaire (GHQ-12).
Search methods for identification of studies
We will search ALOIS (www.medicine.ox.ac.uk/alois) - the Cochrane Dementia and Cognitive Improvement Group’s Specialized Register. The search terms used will be: "activity", "activities", "occupation*", "psychosocial intervention*", "non-pharmacological intervention", "personally-tailored", "individually-tailored", "individual*", "meaning*", "involvement", "engagement", "occupational*", "personhood", "person-centred", "identity", "Montessori", "dementia", "elderly", "old*", "community", "ambulatory", "home care", "geriatric day hospital", "day care","behavioural and psychological symptoms of dementia", "BPSD", "neuropsychiatric symptoms", "challenging behaviour", "quality of life", "depression", also the MeSH terms "aged", "dementia", and "day care".
Searching other resources
We will check reference lists and forward citations of potentially-eligible articles for additional trials and for additional data needed (e.g. intervention development, process-related data). We will contact authors of primary studies and experts in the field, both to identify unpublished or ongoing studies and for any additional data needed. In addition, we will handsearch abstract books of relevant scientific congresses in order to retrieve unpublished studies.
Data collection and analysis
Selection of studies
Two review authors will independently examine the titles and abstracts of citations revealed by the search to identify studies which meet the inclusion criteria. We will resolve any disagreement by discussion or, if necessary, by consulting a third review author.
Data extraction and management
Two review authors will independently extract data using a standardised and piloted data collection form, and will check extracted data for accuracy. We will discuss the results, and in case of disagreement we will consult a third review author to reach consensus. Data extracted will include data on study methods, participants, characteristics of complex interventions (e.g. intervention components, implementation fidelity), outcomes and results.
Assessment of risk of bias in included studies
Assessment of risk of bias of included studies will follow the Cochrane Handbook for Systematic Reviews of Interventions (Higgins 2011). Two review authors will independently assess and score the studies’ methodological quality in order to identify any potential sources of systematic bias. Four potential sources of bias will be considered: selection bias, performance bias, attrition bias and detection bias. If cluster-randomised trials are included, we will assess additional design-related aspects. Study validity will be rated as "low risk", "unclear risk", or "high risk" for each type of bias.
Measures of treatment effect
For continuous data assessed using a single rating scale, we will calculate the mean difference (MD). If different rating scales were used, we will calculate the standardised mean difference (SMD) (absolute mean difference divided by the standard deviation). For dichotomous data the effect measure will be the odds ratio (OR). We will use RevMan 5 (RevMan) for analysis.
Unit of analysis issues
If cross-over trials or cluster-randomised trials are included, we will follow the methods recommended in the Cochrane Handbook for Systematic Reviews of Interventions for each specific design (Higgins 2011).
Dealing with missing data
Intention-to-treat analysis will be used, if reported. In case of missing data, we will contact study authors. If an included study used data imputation, we will check the underlying assumption for choosing the respective data imputation method.
Assessment of heterogeneity
Heterogeneity between trials included in each analysis will be tested using I
Assessment of reporting biases
If a sufficient number of studies are included, we will examine publication bias using funnel plot statistics.
We will group studies by types of intervention, theory base, participants and outcomes. We will pool data for all groups of studies which include at least two comparable studies, using a random-effects model. For those interventions with similar outcomes but different measurement tools, we will calculate standardised mean differences. If available, data of qualitative studies will be used to explain the results of the analysed studies.
Subgroup analysis and investigation of heterogeneity
Depending on the availability of sufficient data, we will conduct subgroup analyses according to:
- severity of dementia;
- types of activities;
- professions administering the intervention.
We will perform a sensitivity analysis to assess the potential influence of studies at higher risk of bias and of studies without an active comparator (e.g. other types of psychosocial or placebo intervention) on the robustness of the results.
Contributions of authors
RM and GM initially planned the study; AR, RM, HR and GM wrote the study protocol.
Declarations of interest
Sources of support
- No sources of support supplied
- Ministry of Education and Research, Germany.Provided the salaries, travelling costs and consumables.