Development and preliminary validation of the Meaningful and Enjoyable Activities Scale (MEAS) in mild dementia

Engaging in meaningful activity is an important contributor to well‐being in late life. This study aimed to develop a new measure of meaningful and enjoyable activities in people living with mild dementia.


| INTRODUCTION
In line with contemporary theories of adult development, meaningful activities, defined as those that provide emotional, creative and intellectual stimulation, 1 are associated with higher levels of well-being and quality of life throughout an individual's life span. 2 Psychological theories of ageing argue that engaging in meaningful and purposeful activity becomes more important as individuals age, representing an important psychological need. 3 According to models of continuity 4 and the selection, optimisation and compensation framework, 5 older people maximise their health and quality of life through selecting and investing in highly valued activities, with the continuation of these central to maintaining positive psychological well-being. 6 Similarly activity theories of ageing 7 posit that successful ageing stems primarily from remaining active, sustaining social interactions and one's personal identity, whereas low levels of social and activity engagement place older people vulnerable to social detachment and withdrawing from remaining active. 8,9 Accumulating evidence from longitudinal studies shows that engagement with hobbies and purposeful activity extends longevity, and healthy life expectancy in older people, 10 reducing incidence of disability and chronic health conditions. 11,12 Despite however both evidence and theory highlighting the important role of meaningful activity for maintaining psychological wellbeing in late life, 11 evidence base for older people experiencing cognitive impairment remains limited. Engaging in meaningful and purposeful activity is particularly important for people living with dementia, as they often experience disengagement from every day rewarding activities. 13 Qualitative studies indicate that people with dementia may be experiencing restricted access to meaningful activities partly due to the social impact of receiving a diagnosis characterised by lack of experiencing agency, and opportunities to remain socially engaged. 14 Maintaining a high sense of purpose in life and remaining socially integrated is considered an important psychological need for people with dementia, which currently remains unaddressed by community-based psychosocial interventions. 13 To allow for the evaluation of future interventions targeting meaningful activity in people with dementia, outcome measures are needed that are reliable, valid and sensitive to change within the context of interventions. 15 A validated measure designed to capture meaningful activity in people with mild dementia would facilitate further research in the area and strengthen the evidence base of patient centred outcomes. 13 In the present study, we aimed to develop a new measure of meaningful and enjoyable activities for people with mild dementia, guided by psychological theories of ageing, patients' every-day experiences, carer feedback and expert opinion. 4,7,16 We followed specific steps that need to be undertaken in order to develop a new scale 15 via a series of four phases, to ensure the measure was appropriate to the population studied and meaningful for people with dementia, their families and clinicians. We additionally investigated the construct validity of meaningful activity by deriving specific hypotheses from theory about predictor variables. We hypothesised that higher levels of meaningful activity would predict higher levels of independence, higher levels of quality of life for people with dementia, and lower levels of psychological distress which we measured by carer-ratings of patient depression and experience of neuropsychiatric symptoms. A secondary aim therefore was to offer insights regarding the theoretical and clinical implications of the construct of meaningful activity in people with mild dementia.

| Participants
People with dementia and their family carers were recruited through National Health Service (NHS) secondary care services, and community mental health teams for older people. Participants were recruited if they: (c) had a family carer who was able to take part and act as an informant.

| Phase 1. Literature review of measures of meaningful and enjoyable activity in older people
The purpose of the literature review was to identify existing scales measuring meaningful and enjoyable activities in people with and without cognitive impairment. We performed a search using Medline and Google Scholar (performed 07/2017), using the following keywords: 'pleasant activities', 'activity scheduling', 'pleasant events' and 'older people' or 'dementia'.

| Phase 2. Developing the item pool
We used a mixed methods approach which combined both qualitative and quantitative methods to generate and refine the concept of meaningful and enjoyable activity in mild dementia and identify types of meaningful and enjoyable activities people engage in their everyday life. A total of 32 participants took part in this phase.

Key Points
• A new scale to measure meaningful activity for people with mild dementia was developed.
• The scale was cross-sectionally and longitudinally associated with functional independence, symptoms of depression and patient and carer-rated quality of life for people with dementia.
• The scale showed adequate internal consistency, showing it captures a three-dimensional construct.
• Future research is required to further validate the scale and test its responsiveness to change.

| Qualitative data on meaningful and enjoyable activities in mild dementia
We conducted 16 individual interviews with people with dementia and 16 individual interviews with family carers, which were designed to obtain patient and carer input about the importance of meaningful activity and type of activities people engage in. All activities mentioned by participants were coded with information grouped under specific concept groups, using framework analysis conducted by two researchers. 18 All interviews were audio recorded and transcribed, and lasted approximately 45 minutes.

| Quantitative data on meaningful and enjoyable activities in mild dementia
After the qualitative interviews, participants (n = 32; same sample as above) were asked to complete a questionnaire containing a list of 53 activities (initial pool of items; see Table S1). Each dyad/participant was asked to rate each activity in terms of frequency and indicate whether the person with dementia engages in any other activity not present in the list.

| Statistical methods
Descriptive statistics were used to assess the association between the scale and demographic variables, including two-tailed independent t tests for dichotomous variables, one way ANOVA for multiple categorical variables and Pearson's correlations for continuous variables.
Internal consistency was determined using Cronbach's alpha, and testretest reliability using Pearson product-moment correlations. We used hierarchical linear regression to assess the independent contributions of demographic and clinical variables to levels of meaningful activity.
An alpha level of .05 (two-tailed) was used to measure statistical significance. We used exploratory factor analysis (EFA) to identify the structure of the scale and confirmatory factor analysis (CFA) to assess the quality of the hypothesised factor structure. 27  Events Schedule-AD. 33 We reviewed items across all scales, and response options in order to inform the development of the new scale. 34-36

| Phase 2
We used results of the search of current questionnaires, psychological theories of ageing (see Figure 1), behavioural activation therapy manuals and expert input to develop the initial pool of items comprising of 53 activities in total (see Table S1).

| Quantitative data
We collected data on the frequency of each of the 53 enjoyable and meaningful activities, in order to identify items that were endorsed by >50% of the sample (n = 32; see Table S1).

| Phase 3
Our expert panel reviewed the final choice of items. At this stage we excluded a total of 27 activities based on low engagement as reported by both qualitative and quantitative data by people with dementia and family carers. The remaining 26 activities were grouped when qualitative input supported overlap between items (eg, 'Doing the dishes' and 'Setting the table' combined in 'Light housekeeping'). As can be seen from Table 1 (see Supporting   Information), we retained items with 50% frequency or higher in

| Construct validity
At baseline, Pearson product-moment correlations showed that the MEAS was significantly positively associated with higher self and carer-rated quality of life for the person with dementia. As hypothesised higher scores on the MEAS were associated with higher levels of functional independence, and lower levels of depression and neuropsychiatric symptoms. Lower MEAS scores predicted higher depression and NPI-related distress in carers. The association of  Table 2).  Table 3).

| Sensitivity to change
We additionally investigated the scale's sensitivity to change. Effect size (ES) values were small to moderate, ranging from 0.03 to 0.43. The 95% confidence intervals ranged from small to large; whereas in all instances intervals did not contain zero. Subgroup analyses by baseline MEAS scores (high vs low; cut-off = 39) indicated that ESs were moderate for the lower MEAS group at both time-points (see Table 4).

| DISCUSSION
In this study, we report on the development and preliminary validation of a new scale to measure meaningful and enjoyable activities in people with mild dementia. We used a mixed methods approach in order to develop the new scale incorporating relevant theories, current instruments, expert opinion and both quantitative and qualitative data. 15 Our scale is unique by incorporating patient and carer experience, clinician input and being guided by theoretical models, which are essential steps in the development of instruments and subsequent validation. 15 Our results provide support for the validity of the construct of meaningful activity in people with mild dementia. An important contribution of our study therefore is providing the first evidence base for the clinical and theoretical utility of instruments measuring meaningful and enjoyable activities in mild dementia.
In line with our hypotheses, meaningful activity was significantly associated with both patient and carer outcomes. Our findings are consistent with psychological theories of ageing highlighting that meaningful activity is an important parameter of psychosocial health in older people even within the context of chronic health and disability, 5-9 predictive of higher levels of quality of life. 11 As hypothesised by activity theories of ageing higher levels of meaningful activity were associated with lower levels of depression and overall neuropsychiatric symptoms 37 and better overall physical health status for people with dementia at 3 months. 33 An important finding of our study is that higher levels of meaningful activity were associated with higher levels of functional independence for people with mild dementia; this suggests that engagement in meaningful activity may be associated with maintenance of functional status; an effect that we observed both at 3 and 6 months. Similarly to longitudinal studies in older people without dementia, this association persisted after controlling for depressive symptoms, self and carer-ratings of quality of life and carer mental health which may be confounding such an association. 12 Given the limited knowledge in the area, it is not possible to ascertain which mechanisms may explain this association. One hypothesis is that people with mild dementia who engage in meaningful activity may experience higher levels of vitality and motivation, which in turn maintains their every-day function. A further potential hypothesis is that continuous engagement in meaningful activity may promote the use of compensatory strategies or exert a stress buffer whereby specific behaviours support individuals to adapt to loss experienced by dementia, 5,38,39 a finding that was supported by our qualitative data. Given the limitations of our study and current research, future studies are needed to determine how effects of meaningful activity may operate. Our preliminary analyses support a multidimensional structure of three underlying constructs of meaningful and enjoyable activity in mild dementia of leisure-time physical activities, social engagement and mentally stimulating activities.
Our findings are consistent with contemporary theories of human motivation and human action 16 highlighting the theoretical importance of the construct of meaningful activity in people with dementia.
Our data contribute to current literature by highlighting relevant theories, [3][4][5] and providing a foundation for the evaluation of interventions that aim to promote meaningful activity in this population. 19 Our results have important implications for dementia care interventions as they suggest that purposeful activity in mild dementia is crosssectionally and longitudinally associated with maintenance of activities of daily living, similar to evidence in healthy older people. 40 For example, a greater focus on meaningful and purposeful activity may provide important new knowledge for the development of future psychosocial interventions, and interventions that aim to reduce functional disability.
Despite the originality of the findings, our study has several important limitations. Our sample was small limiting the generalisation of our results. Given the small sample size in our study our data on the reliability and validity of the MEAS are only preliminary and require further evaluation. We recruited people with mild dementia who were generally active, therefore our findings cannot be generalised to people with dementia who experience poor mobility and function or those living with a chronic illness. We did not measure self-ratings of meaningful activity directly by people with dementia, which may have influenced our findings. Although activities of daily living and engagement in meaningful and purposeful activity are generally considered separate constructs they do partly overlap. We were able to test sensitivity to change over 3 and 6 months, but future studies should test responsiveness to change of the MEAS using large samples. Future research should examine the impact of other variables not tested in our study such as the influence of social support, and the effect of physical frailty.
Providing more support and changing social attitudes towards people with dementia's needs for meaningful and enjoyable activity is important for the provision of high quality care and raising quality of life for people living with dementia.