Effects of Dementia Care Mapping on well‐being and quality of life of older people with intellectual disability: A quasi‐experimental study

Abstract Background The ageing of people with intellectual disability, accompanied with consequences like dementia, challenges intellectual disability‐care staff and creates a need for supporting methods, with Dementia Care Mapping (DCM) as a promising possibility. This study examined the effect of DCM on the quality of life of older people with intellectual disability. Methods We performed a quasi‐experimental study in 23 group homes for older people with intellectual disability in the Netherlands, comparing DCM (n = 113) with care‐as‐usual (CAU; n = 111). Using three measures, we assessed the staff‐reported quality of life of older people with intellectual disability. Results DCM achieved no significantly better or worse quality of life than CAU. Effect sizes varied from 0.01 to −0.22. Adjustments for covariates and restriction of analyses to people with dementia yielded similar results. Conclusion The finding that DCM does not increase quality of life of older people with intellectual disability contradicts previous findings and deserves further study.

Traditionally, care for people with intellectual disability has focused on promoting their well-being, learning and development of skills (Balogh et al., 2016;Bertelli, Salerno, Rondini, & Salvador-Carulla, 2017;Leutz, 1999). The ageing of the people with intellectual disability (and dementia) has led to a need for more care and for a more integrated and person-centred approach, which can be derived partly from standard geriatric and dementia care (Bickenbach et al., 2012;Campens et al., 2017;Hales et al., 2006). Tom Kitwood introduced the philosophy of personhood in dementia care to change its focus to a person-centred approach (Barker

Box 1 Structure and contents of DCM
Dementia Care Mapping (DCM) is an intervention developed by the Dementia Research Group at Bradford University (UK) to improve the quality and effectiveness of care from the perspective of people with dementia (Brooker & Surr, 2005). It is based on Kitwood's social-psychological theory of personhood in dementia (Kitwood, 1992). DCM was designed as an observational tool to develop personcentred care for people with dementia in nursing homes (Van de Ven et al., 2013). Person-centred dementia care can be specified as: valuing people with dementia; using an individual approach that recognizes the uniqueness of the person; making an effort to understand the world from the perspective of the person; and providing a supportive social environment (Brooker, Woolley, & Lee, 2007). DCM has three main components:

Mappers' training in DCM
A staff member receives training to become a certified DCM mapper. A basic DCM mapper's course includes four days of basic concepts and skills. To participate in research, a mapper must achieve the level of advanced mapper. Requirement is a three-day course focused on the background and theory of DCM and person-centred care. An advanced DCM mapper can observe(map) care with an inter-reliability score of ≥0.8, report the observation, provide feedback and instruct staff in drawing up action plans (Van de Ven et al., 2013).

Organizational introductory briefing
Before the mapping (systematic observation of the actual care) takes place, the staff of a group home receives a short introduction (two hours). This introduction explains the basic principles of DCM and person-centred care to ensure endorsement and appropriate implementation ( Van de Ven et al., 2013).

DCM cycle: observations feedback action plan
The introductory DCM organizational briefing day is followed by a DCM cycle, consisting of: 1. Observation, analysis and report. A mapper observes four to six residents in communal areas for 4 to 6 consecutive hours. Each 5-min time frame, a code is noted to record what happened to each resident and the associated behaviour of the staff. The DCM coding protocol contains 23 behavioural category codes (BCCs), well-/ill-being (WIB) values, personal detractions (PDs) and personal enhancers (PEs) (Brooker & Surr, 2005).
2. Feedback. The results of the mapping are communicated to the staff. The purpose of this feedback is to observe residents' behaviour in the context of both their lives and the care (Brooker & Surr, 2005). Feedback is presented in a non-threatening way and intended to raise staff awareness of their own and residents' behaviour, thereby motivating them to improve their competences and performance (Van de Ven et al., 2013).
3. Action plans. Based on the feedback, the staff draws up action plans to improve care at individual and group levels. Action plans are tools to implement in daily practice the principles of person-centred care. & Board, 2012;Brooker & Latham, 2015). Evidence suggests that person-centred methods increase the quality of intellectual disability care and are associated with psychosocial benefits and greater well-being among older people with intellectual disability (Bertelli et al., 2017;Brown et al., 2016;Brownie & Nancarrow, 2013;Cleary & Doody, 2017;Van der Meer, Nieboer, Finkenflügel, & Cramm, 2018;De Vreese et al., 2012).
One such person-centred method is DCM. DCM was designed to support dementia-care staff working in psychogeriatric nursing homes to improve the quality and effectiveness of care from a person-centred approach, and thereby improving the well-being and quality of life of clients with dementia (see Box 1, Figure 1) (Kitwood, 1992). Studies on DCM applied in nursing home settings found less affective behaviour, and physical and verbal agitation in people with dementia (Kuiper, Dijkstra, Tuinstra, & Groothoff, 2009;Rokstad et al., 2013). The method was shown to be applicable, as well as a useful and valuable support to staff caring for people with intellectual disability, whether or not they had dementia (Finnamore & Lord, 2007;Jaycock, Persaud, & Johnson, 2006;Persaud & Jaycock, 2001). Schaap, Fokkens, Dijkstra, Reijneveld, and Finnema (2018) concluded that for older people with intellectual disability, both with and without dementia, DCM was feasible when tailored to daily intellectual disability-care practices regarding the case histories and examples (Schaap, Fokkens et al., 2018).Nevertheless, although DCM is feasible and is perceived as valuable in intellectual disability care, evidence on its effectiveness is still lacking Schaap, Fokkens et al., 2018). The aim of this study was therefore to examine the effect of DCM, compared to care-as-usual, on the well-being and quality of life of older clients with intellectual disability.

| Study design
To assess well-being and quality of life in older people with intellectual disability, we performed a quasi-experimental study from November 2014 to April 2016, comparing DCM with care-as-usual, using a baseline measurement and follow-up measurements after 7 and 14 months.

| Study setting and participants
We performed a two-stage sampling, first sampling intellectual disability-care organizations and then assigning homes per organization to either the DCM or the control condition. First, we approached all six major intellectual disability-care organizations which had at least four group homes for older clients in the north of the Netherlands; all were willing to participate (100%). Second, each organization provided four group homes for the study. A group home houses a small number (range 4 to 12) of older people with intellectual disability in need of care, support and supervision by care staff are living together. All participants were clients living in such group homes. The possibilities for using DCM determined our inclusion criteria for the group homes; we needed the possibility to observe four people simultaneously in a shared area (e.g., a living room) for at least two consecutive hours, the presence of at least three older people with (a strong suspicion of) dementia and a stable team not anticipating reorganization.
To reach a balance between groups regarding organizational culture, we allocated two of the four homes per organization to the intervention group and two to the control group. Allocation of group homes to the intervention or control groups depended on the distance between the mapper and the group home, and on sufficient geographic distance between control and intervention homes to prevent contamination.

| Intervention
The intervention consisted of two applications of a full DCM cycle per group home, with an interval of six months. We used the DCMin-ID-version, which was found to be feasible in intellectual disability care for older people with intellectual disability, both with and F I G U R E 1 Dementia Care Mapping intervention components and cycle (based on: Van de Ven (2014) without dementia. In this version, the core DCM principles and DCM codes were maintained but the description of the codes was adapted to intellectual disability-care practice Schaap, Fokkens et al., 2018). First, the managers of each of the twelve participating group homes selected a staff member with the required competencies to become a "DCM mapper", that is a trained observer. The twelve selected staff members had the required competencies, including at least 10-year work experience with older people with intellectual disability, at least 5-year work experience in working with people with dementia, at least a bachelor's degree, and basic knowledge of person-centred care. DCM Netherlands trained these staff members to an advanced DCM level, enabling them to carry out DCM: to observe (map), report and provide feedback, and to instruct and support in drawing up action plans (Box 1) (Van de Ven et al., 2013). Second, a DCM trainer and a mapper jointly provided all staff per group home with the DCM introductory organizational briefing (see Box 1). Third, the mappers carried out two full DCM cycles, consisting of 6 hr structured observation, feedback and action planning (for further explanation see Box 1). The mappers observed four clients for 4 to 6 consecutive hours in communal areas of a group home. They reported the results of the observation to the staff in a feedback session, in order to help them understand clients' behaviour in the context of their lives and of the care (Brooker & Surr, 2005). Based on these reports, the staff made action plans to improve care at individual and group levels. They sent these action plans to DCM Netherlands within two months. To guarantee accurate implementation, the application of DCM (including the feedback and the action plans) occurred in close cooperation with the DCM trainers. Further, to maintain independence and to avoid interpretation bias due to familiarity with habits, clients and colleagues of the mappers carried out DCM in each other's organizations.
To guarantee intervention adherence, the DCM trainers strictly monitored the intervention and supported the newly trained mappers in following the DCM-in-intellectual disability implementation protocol (Bradford Dementia Group, 2014). This protocol includes a description of all DCM preconditions and of every step needed to implement DCM in intellectual disability care (Bradford Dementia Group, 2014). This protocol ensured that DCM was implemented and applied similarly in each group home, in spite of differences in (staff-team) size, number of residents, culture and approach.

| Control condition
The control group received care-as-usual (CAU; continuous care with use of regular services); support in all aspects of day-to-day life, including activities of daily living (ADL) and day-care activities) but no DCM. The control group homes were offered a DCM training day after the study period.

| Procedure
We collected data on all clients living in the group homes, with or without dementia, at three time points: at baseline, and after 7 and 14 months (i.e., three months after each application of DCM in the intervention group). For each client in the group home, two staff members familiar with the client independently filled in a questionnaire at each time point. The inter-observer agreement for each client at each time point was high (mean Kappa 0.81). In addition, for each client, we asked one relative to fill in the questionnaire. Staff and relatives could choose to fill in the questionnaire on paper or web-based.

| Outcome measures
The primary outcome measure regarded the quality of life (QoL) of the client as reported by staff and a close relative, measured by the Mood, Interest and Pleasure Questionnaire (MIPQ) (Petry, Kuppens, Vos, & Maes, 2010;Ross & Oliver, 2003). This validated questionnaire was chosen because it relates best to the core elements of DCM. The MIPQ measures emotional QoL of people with severe and profound intellectual and multiple disabilities, by using proxies.
It is a 23-item questionnaire using a five-point Likert-scale response format. All items regard informants' observations of people over the preceding two-week period. They are divided into three subscales: the "positive mood" subscale (9 items), the "negative mood" subscale (7 items) and the "interest & pleasure" subscale (7 items). Lower scores denote lower mood levels and lower levels of interest and pleasure. By summing the item scores, the maximum possible scores for the positive mood subscale, negative mood subscale, interest & pleasure subscale and total scale are 36, 28, 28 and 92, respectively.
See Table 1 for further details of this questionnaire. to respond to clients' needs (8 items). All subscales used a four-point Likert-scale from "never" to "always" per item. The score on each subscale is the mean of the scores on all items, where higher scores denote better quality of living.

| Background characteristics
Data on background characteristics of clients included age, sex, level of disability, dementia stages, having a syndrome, other (physical and mental) diseases and health status as measured by the EuroQol-5D-5L, including EQ-5D-VAS (Visual Analogue Scale) for proxies (Janssen et al., 2013). Furthermore, we registered the number of years that the clients were living in homes of the organization and in the group home concerned, whether the clients had day-care activities in-or outside the group home, and whether the clients had contact with a relative.

| Sample size
Because DCM is an intervention aimed at staff, the sample size for including group homes depended on the number of care staff required.
We therefore conducted a post hoc power analysis for clients, using as outcome the Mood, Interest and Pleasure Questionnaire (MIPQ) (Petry et al., 2010;Ross & Oliver, 2003). A post hoc power analysis involves a power calculation based on the collected data to show specifically how much power the study has. This analysis of the difference in effects revealed low power (<0.8), particularly due to the small effect sizes found, which required large samples to detect. The post hoc power estimates were 0.11 and 0.07 for interaction term interventions by T1 and by T2, respectively. We performed power analysis using a Monte Carlo simulation of the MPlus package version 8.

| Data analysis and reporting
First, we described the flow of clients. Second, we described the baseline characteristics of the clients in the two groups. We tested the differences between the two groups using Pearson chi-square tests for categorical variables and one-way analysis of variance (ANOVA) for continuous variables. Third, we compared the differences over time of the primary and secondary outcomes in the DCM and CAU groups. Because of the high inter-observer agreement, we performed all analyses without further adjustments for informants. We assessed the effects of DCM using intention-totreat (ITT) analyses after the first DCM cycle (T0 to T1) and after the second DCM cycle (T0 to T2). We did so using multilevel mixedeffect model techniques in which measurement moments (level 3) were nested under clients (level 2), and the clients were nested under organizations (level 1). We performed the first analysis using the unconditional means model (Singer & Willett, 2003). For each outcome, we calculated effect sizes (ESs) for the differences in change between both groups. In this analysis, the time points were the first level, the clients the second and the group homes the third.
We repeated these analyses in three additional procedures.
First, we included covariates found to have a significant influence on the intercept in the conditional means model, to examine whether this had a major influence on the outcomes. Covariates included age and sex, as well as prevalence of dementia, autism and/or of severe behavioural problems. Second, we performed complete case analyses only on those clients regarding whom we received questionnaires at all three time points. Third, we restricted the analyses to people with intellectual disability and a diagnosis of dementia. Finally, we examined whether the results differed depending on whether or not proxy informants had experience with a person-centred approach.

F I G U R E 2 Flowchart detailing numbers of group homes and staff members by condition
Excluded group homes (n = 1): -reorganization TA B L E 2 Background characteristics of clients and of staff who reported on clients for the intervention ("DCM") and care-as-usual (CAU) group We performed all analyses using IBM SPSS Statistics version 25.0; we used SAS software for data management. We carried out the design, analysis and reporting according to the CONSORTchecklist (Schulz, Altman, & Moher, 2010).

| Ethical permission
The Medical Ethical Committee of the University Medical Center Groningen did not consider approval to be required (decision M13.146536) because DCM is an intervention aimed at staff. We performed the trial in accordance with the Helsinki Declaration and obtained written informed consent from the legal representatives (i.e., a relative or an administrative person) of the people with intellectual disability participating in the study. The trial is registered in the Dutch Trial Register, number NTR2630.

| Background characteristics
Clients in the intervention and control groups did not differ in background characteristics regarding age, gender, mean years in current location and having day-care activities, but clients in the intervention group turned out to have more severe handicaps, more behavioural problems, more dementia and a lower health-and physical status (Table 2). Between the intervention and CAU groups, the background characteristics of the staff did not differ.

| D ISCUSS I ON
This study examined the effectiveness of the intervention DCM on quality of life and well-being of older people with intellectual disability. We found no significant differences in effects between DCM and CAU on the outcomes; effect sizes were small (Cohen, 1988).
In this well-designed quasi-experimental study, we found a lack of effect of DCM on quality of life, a result which contrasts with promising findings in earlier qualitative studies on DCM and personcentred intellectual disability care (Finnamore & Lord, 2007;Jaycock et al., 2006;Schaap, Fokkens et al., 2018). This may be explained in several ways. First, we found rather high scores on most outcome measures at baseline, which may have caused a ceiling effect in measuring effects. For example, on the primary outcome, MIPQ clients scored more than one standard deviation higher than the norm population (Petry et al., 2010); the same held to a slightly lesser degree for clients with a diagnosis of demen-

| Strengths and limitations
Our study has a number of strengths. First, we carefully assessed the feasibility of DCM for intellectual disability care prior to this study with a positive result and used this adapted DCM-in-ID version (Schaap, Fokkens et al., 2018). Next, our study had a large sample size, a control group receiving CAU, participants from a wide range of organizations, sufficient strategies to avoid contamination and bias, and a long follow-up of one year with two follow-up measurements. Furthermore, our study had a low loss to followup. Finally, the inter-observer agreement between the proxies (two staff members) for the individual clients was high and perceived as good to excellent (Essen 2004;Viera & Garrett, 2005).
Limitations should, however, also be noted. First, we fully relied on reports of the staff, using proxy-questionnaires; this may have led to information bias and a less accurate measurement of change. Moreover, relatives generally reported being unable to assess clients' outcomes because they had no contact on a daily basis. Furthermore, due to chance we had some imbalances between the intervention and control groups, with relatively more severe disabilities and more dementia in the intervention group.
However, given the pre-post design that we used, this is unlikely to have affected our findings.

| Implications
We found no evidence that DCM improves the quality of life of older people with intellectual disability. As previous qualitative studies are definitely positive regarding DCM Schaap, Fokkens et al., 2018), further research is needed to elucidate this discrepancy, for example by means of in-depth interviews with participating intellectual disability staff or direct observation. Furthermore, it is uncertain whether DCM affects quality of life directly, despite its own claim. Future research should investigate the effects of DCM in daily care and its direct effects on intellectual disability-care staff and their clients.
Moreover, the challenges of developing person-centred care in intellectual disability care, including in the integration of health and social care, require better understanding (Bertelli et al., 2017).
The promising option of DCM in intellectual disability care thus deserves further study.

| CON CLUS ION
Despite previous studies that reported that DCM and person-centred care increases well-being of older people with intellectual disability, with or without dementia, we have found no evidence that this is the case regarding quality of life. This discrepancy deserves further study.

CO N FLI C T O F I NTE R E S T
The authors have no conflict of interest to declare.