COMMUNI-CARE: Assessment tool for reactions and behaviours of patients with dementia in a multisensory stimulation environment

Abstract

Background

The ‘Snoezelen’ is an approach based on stimulation and sensory stimulation proposals, giving priority to the notion of caretaking. The aim of this paper is to present the creation and validation of the COMMUNI-CARE scale. This is a new tool that allows for an evaluation of the psycho-emotional well-being that the patient with dementia shows in a ‘Snoezelen’ multisensory stimulation environment.

Methods

In total 429 evaluations in 143 multisensory stimulation interventions were made using the COMMUNI-CARE scale, in 16 patients between 53 and 85 years of age, diagnosed with moderate to severe dementia. The goal was to evaluate the psycho-emotional well-being the patients present.

Results

The tool’s internal consistency showed a Crombach alpha of 0.90. The concurrent validity between the COMMUNI-CARE scale and the Clinical Global Impression (CGI) was of r = −0.961. The Kappa index used to determine the reliability between evaluators was of K = 0.87.

Conclusions

The COMMUNI-CARE scale fulfills the basic principles of classic psychometrics of construct, and criterion validity and reliability. It does so while showing a clear idea, through its five subscales (anxiety, communication, pleasure, adaptation to the surroundings and affection), of the degree of well-being that the patient with dementia shows during such interventions. This scale embodies, through psychometrics, a very subjective human experience with a tool unavailable to date.

Keywords

dementia emotion-oriented care multisensory environmental therapy multisensory stimulation person-centred care non-pharmachological therapies in dementia Snoezelen scale

Introduction

The term ‘Snoezelen’ is a word that comes from the contraction of two Dutch terms, ‘Snuffelen’ and ‘Doezelen’, that mean, respectively, ‘smell, feel’ and ‘snooze or relax’ (Chung, Lai, Chung, & French, 2002). It is an individual type of approach that uses multisensory stimulation, generally in an adapted environment: the ‘Snoezelen room’. The ‘Snoezelen’ was introduced during the 70's by Hulsegge and Verheul, who worked at the ‘De Hartenberg’ institute, in northern Holland, for patients with learning disabilities. Its aim was to reduce the unpleasant effects of sensory deprivation in those patients (Hulsegge & Verheul, 1987). Their priority would be to promote the patient’s well-being, relaxation and interaction with the environment.

Since then, clinical application of ‘Snoezelen’ has broadened from the field of learning disabilities. Now, it also covers the attention of mentally handicapped people, hyperactive children and teenagers, patients with psychiatric pathologies, patients with chronic pains and in palliative care (Gonet & Lenoel, 2008; LeBel et al., 2004; Schofield & Davis, 1998, 2000; Schofield & Payne, 2003; Shapiro, Parush, Green, & Roth, 1997; Teitelbaum et al., 2007).

The integration of demeanor-related practice and theory is, as a concept, rather new (Staal, 1999). During the 90's, this kind of intervention broadened its use to the psychogeriatric field. It was aimed at decreasing psychological and behavioural symptoms in dementia (Cohen-Mansfield, 2001; Finkel, 2003; Finkel, Costa e Silva, Cohen, Miller, & Sartorius, 1996), in the psychogeriatric long stay units in Holland, England, Belgium, France, and most recently Spain. The results were rather interesting (Andreeva, Dartinet-Chalmey, Kloul, Fromage, & Kadri, 2011; Baker et al., 2001; Holtkamp, Kragt, van Dongen, van Rossum, & Salentijn, 1997; Kragt, Holtkamp, van Dongen, van Rossum, & Salentijn, 1997).

In psychogeriatrics, its implementation is also based on the fact that the isolation that an elder person with dementia suffers in an institution can also be considered a form of sensory deprivation (MacDonald, 2002; Norberg, Melin, & Asplund, 1986; Solomon et al., 1961). This may be the source of their behavioural and psycho-emotional problems (Kiely, Simon, Jones, & Morris, 2000; Liederman, Mendelson, Wexler, & Solomon, 1958; Loew & Silverstone, 1971; Verkaik, van Weert, & Francke, 2005). These people have progressively fewer common-life experiences with other people. Thereby, they also have fewer chances of expression, communication, intimacy, affection and pleasure, all of which are typical experiences of human beings. According to Dunn, ‘The experience of being human is imbedded in the sensory events of everyday life’ (Dunn, 2001, p. 608–620).

The ‘Snoezelen’ is a part of the so-called ‘emotion-centred therapies’ (Dröes, 1998; Finnema, Dröes, Ribbe, & Tilburg, 2000; Shapiro & Bacher, 2002). In dementia, ‘Snoezelen’ is conceived as a personal and intimate approach. It allows the very dependent and highly medicated patients to re-discover the world of sensory and affection (Burns, Cox, & Plant, 2000; Kragt et al., 1997). The goal of ‘Snoezelen’ is to take the patient with dementia to an understandable and enjoyable process, that can be perceived through their capacity for affection and their senses. That way, the patient’s communication and emotional health can be increased (Achterberg, Kok, & Salentijn, 1997; Long & Haig, 1992; van Weert et al., 2004; van Weert, van Dulmen, Spreeuwenberg, Ribbe, & Bensing, 2005).

In recent years, there has been a growing interest in multisensory stimulation in patients with dementia, in ‘Snoezelen’ environments (Baker et al., 2001). Nowadays, multisensory stimulation has a degree of recommendation ‘B’ as a non-pharmacological intervention for dementia (Livingston, Johnston, Katona, Paton, & Lyketsos, 2005). Nevertheless, in literature, there are few reliable controlled essays on the use of ‘Snoezelen’ for dementia (Chung et al., 2002). In general terms, they concluded that disruptive and agitated behaviour improved briefly, but only during the intervention in the multisensory stimulation environment. They showed no long-term effects, and the benefits of the intervention were produced in situ (Baker et al., 2003; Lancioni, Cuvo, & O’Reilly, 2002; Livingston et al., 2005; Moffat, Barker, Pinkney, Garside, & Freeman, 1993; van Diepen et al., 2002). However, although it may feel reassuring in some upset patients, each experience is different, and some patients may get altered or even disturbed (Baker, Dowling, Wareing, Dawson, & Assey, 1997; Wylie, 2003).

To evaluate the effectiveness of the ‘Snoezelen’ intervention, scales and standard inventories are used (the ones used in practice and investigation in the ‘psychological and behavioural symptoms in dementia’ (BPSD) field (Cohen-Mansfield, 1996; Cummings et al., 1994; Finkel et al., 1996). On the other hand, to date, very little has been written on assessment, within multisensory stimulation environment (Staal, Pinkney, & Roane, 2003). In general terms, in most studies where positive or negative ‘within sessions’ effects were seen, data were largely qualitative and presented as a check list (Baker et al., 2003). It was also based on direct behavioural observations, in which there may be some confusion involving their emotional translation. In fact, many of these behaviours can be coherent even if they are displays of opposition or attachment. However, this does not turn them into negative or pathologic behaviours, as they are not regulated by cognition (for example, closing one’s eyes does not always mean a rejection to the intervention). During the last few years, several tools have been proposed to attempt to evaluate multisensory stimulation interventions. However, none of them have ever become tools for formal and systematic evaluation. The first one, based on videotapes and an extensive number of behavioural items, attempts to value affective and instrumental communication, as well as the different kind of patient responses during multisensory intervention (Caris-Verhallen, Kerkstra, Bensing, & Grypdonck, 2000; Roter, 1989). In 1995, Baker and Dowling developed the INTERACT tool, a Likert-type scale. They tried to reduce the number of items to 22, according to the frequency with which behaviour occurs during the intervention (Baker & Dowling, 1995). Finally, in 1998, Verstraten and Van Eekelen (1998) developed the behaviour observation scale for intra-mural psychogeriatrics (GIP). It was composed of five subscales: non-social behaviour, disturbances of consciousness, repetitive behaviour, restless behaviour and sad behaviour. Nonetheless, they did not possess an adequate internal consistency (Baker et al., 2003). This speaks about the great variability of observable behaviours, which can sometimes have a completely opposite meaning.

Therefore, the goal of this paper is to present the creation and validation of a new tool. It is fast and practical, and allows for an evaluation of different reactions and behaviours, through five essential human dimensions (anxiety, communication, pleasure, adaptation to the surroundings and affection). It also assesses the relational experience and psycho-emotional well-being that the patient with dementia shows while in a ‘Snoezelen’ multisensory stimulation environment.

Method

Setting and participants

A hundred and forty-three multisensory stimulation interventions were made, on patients from the medium and long psychogeriatric stay units, at Sagrat Cor de Martorell Hospital, Barcelona. They suffered from dementia of different aetiologies, and were diagnosed according to: National Institute of Neurological Disorders and Stroke-Alzheimer's Disease and Related Disorders Association (NINCS-ADRDA) criteria (McKhann et al., 2011) for Alzheimer disease; NINDS-AIREN criteria (Roman et al., 1993) for vascular dementia; and McKeith criteria for dementia associated to Lewy bodies (McKeith et al., 2005). The grade of dementia, according to the Hughes CDR Scale, showed moderated and severe states (Hughes, Berg, Danziger, Coben, & Martin, 1982).

Measures

The COMMUNI-CARE Scale

The process of creation of a scale was followed. It evaluated the different types of responses that dementia patients show in multisensory stimulation sessions, inside a ‘Snoezelen’ environment. To achieve that, a behavioural evaluation expert made a series of exploratory observations. They consisted of several weeks of multisensory stimulation sessions directed by an expert in ‘Snoezelen’. Afterwards, he directed more than 50 sessions as a therapist. This was done to evaluate, analyse and describe the different reactions and behaviours that patients with dementia present inside a ‘Snoezelen’ multisensory environment. In order to do that, the author attended to the principles of humanist psychology, as well as adapted care to the feelings and emotional needs of the patient with dementia (Dröes, 1997, 1998). He was also based on Martin’s experience (Martin, 2003) with autistic adults. The author proposed an adequate evaluation of: the multisensory interventions, how a patient with dementia can experience an intervention and, therefore, the socio-emotional well-being it can assure. It consisted of gathering the different reactions and behaviours during the intervention in a scale of five fundamental dimensions: D1 anxiety, D2 communication, D3 pleasure, D4 adaptation to the surroundings and D5 affection.

In this way, each dimension or subscale was created to be evaluated via a scale, using Likert punctuation and grading from 1 to 5. Each grade expresses well-defined conducts and reactions that make each level exclusive from the next one. Based on the work done by Pace et al. (1985), and according to each subscale, the best score is a “Positive Approach Response”, defined as a patient’s positive global response in each dimension. It includes for example, but is not limited to: calm sensations, positive spontaneous verbal or gestural communication, positive facial and corporal expressions, hugs and spontaneous caresses. The other end of the scale shows a ‘Negative Behavioural’. It includes for example, but is not limited to: signs of anxiety, negativism, physically and verbally aggressive behaviour, silence and agitated conduct (Staal, Pinkney, & Roane, 2003). Lastly, an ‘indifferent behaviour’ would be globally given by a limited reaction and connection with the experience. We can then get the scoring for each dimension or subscale, and create a total scoring of the scale, by adding the five subscales (5–25 rank).

Once the process of scale creation was finished, they carried on with the process of analyzing the parameters of standard reliability and validity. This is used for human behaviour evaluation tools, according to classic psychometrics (Gulliksen, 1950). For this final part of the COMMUNI-CARE scale’s process of reliability and validity, the Clinical Dementia Rating (CDR) (Hughes et al., 1982) scales were used to establish the patient’s level of dementia. The Clinical Global Impression (CGI) (Guy, 1976) was used to value the clinical impression of the ‘Snoezelen’ intervention. For this, 5 CGI scale values were given. Level 1 indicated a very bad evaluation of the intervention, level 5 a very good evaluation of the intervention, and level 3, the middle point that indicates an indifferent intervention.

Procedure

The structure of the session was composed by its opening, conduction and closing. It integrated behavioural interventions with emotion-oriented care, allowing the clinician to determine the patient’s practical aptitude. This allowed to modify the session’s arrangement and level of treatment (Shapiro & Bacher, 2002; Staal, 2012). Each session was assessed by the session leader (who is also the author of the scale), at three different stages: the beginning (from minute 0 to 10 approximately); the middle (minute 10 to 20 approximately) and the end. This was done to analyse the influence of exposure time to the session, on reactions and behaviours of patients with dementia. The global assessment of the session offers a rank of 15–75 points. The goal of the scale is to objectify, through the five dimensions it is composed of, the degree of the general well-being that the patient with dementia transmits in a multisensory stimulation environment. In that way, a total of 429 assessments in 143 multisensory stimulation interventions were made using the COMMUNI-CARE scale. Each intervention lasted for 30 min, in 16 patients (male and female) with dementia.

Ethics

The legal representative of each participant received written and verbal information prior to the study and gave written informed consent. The Medical Ethics Committee rated the study, which was undertaken in accordance with the Helsinki Declaration of 1975, as revised in 1983, and pronounced that it would not be burdensome for the participant.

Statistical analysis

All statistics were generated using SPSS 16.0.1 (Chicago, IL, USA). In a first level of analysis, descriptive data from the sample and the tool used in the study were obtained. Afterwards, in order to establish the construct validity, the internal consistency of the COMMUNI-CARE scale was analysed through the establishment of the Crombach alpha (for subscales, as well as the whole scale). To establish the concurrent validity, an intraclass correlation coefficient (ICC) was established between the COMMUNI-CARE scale and the CGI scale. To determine the reliability between evaluators, the Kappa index was calculated in 15% of the interventions. In these, patients were assessed by two clinicians (one of which led the session). They would later rate the session independently using the scale. Finally, the test–retest reliability was not analysed, because every session is unrepeatable in time and any change was attributable to other circumstances of the patient. A two-sided significance level of 5% was used for all analyses.

Results

A total of 429 assessments were made with the COMMUNI-CARE multisensory stimulation interventions scale in 16 patients (75% male and 25% female). They were between 53 and 85 years of age (average 76.16, DE: 8.27), and diagnosed with: Alzheimer disease (60% of cases); vascular and mixed dementia (30% of cases); and dementia caused by Lewy bodies (10% of cases). In relation to the seriousness of the dementia, the patients were placed in a moderate level in 42% of the cases (CDR = 2) and a severe level at 58% of the cases (CDR = 3).

Table 1 shows the descriptive results of the COMMUNI-CARE scale in the three stages of the session (beginning, middle and end), by subscales. It also shows it globally throughout the entire session.

Table 1.

Descriptive results of the COMMUNI-CARE scale in the three stages of the session, by subscales and throughout the entire session

Session stage	Anxiety	Communication	Pleasure	Adaptation to the surroundings	Affection	Total
Beginning	2.32 (1.09)	2.55 (1.12)	2.62 (1.22)	2.45 (1.61)	2.59.(1.00)	12.56 (5.07)
Middle	2.02 (1.29)	2.38 (1.51)	2.68 (3.65)	2.26 (1.26)	2.34 (1.10)	11.70 (7.01)
End	2.22 (1.37)	2.45 (1.38)	2.74 (3.67)	2.50 (1.44)	2.40 (1.17)	12.33 (7.36)

Note: Data expressed in mean and standard deviation.

The tool’s internal consistency showed a Crombach alpha of 0.90 for the scale’s total. The index is smaller if the Affection subscale is excluded (alpha = 0.88), and bigger if the Pleasure subscale is excluded (alpha = 0.95).

The ICC, for the assessment of the concurrent validity between the COMMUNI-CARE scale and the CGI, was of r = −0.961 (Sig. p = 0.001). It would be a little lower if only the initial assessment of the ‘Snoezelen’ session (r = −0.816; Sig. p = 0.001) was considered.

The Kappa index used to determine the reliability between evaluators was of K = 0.87.

The expert observer scored the ‘Snoezelen’ sessions, based on their positivity degree in the CGI scale.

Figure 1 shows the COMMUNI-CARE scale scores with their corresponding CGI values, at each stage of the session.

Figure 1.

COMMUNI-CARE scale scores with their corresponding Clinical Global Impression (CGI) values, at each stage of the session

The number of interventions considered as positive for the patients (52% of sessions), the ones considered as indifferent (19% of sessions) and as negative (28% of sessions) were calculated, according to the GCI scale scorings.

Table 2 shows the cutting points of the COMMUNI-CARE scale to classify the intervention as positive, indifferent or negative. These data were obtained by taking the average of the three temporal intervention stages into account.

Table 2.

Cutting points of the COMMUNI-CARE scale, to classify the intervention as positive, indifferent or negative

Type of session	Range scores (cut off)
Positive approach response	5–11 points
Indifferent response	12–17 points
Negative behaviour	More than 17 points

Discussion

The COMMUNI-CARE scale was created as an evaluation tool for reactions and behaviours of patients with dementia in a ‘Snoezelen’ multisensory stimulation environment. It accomplishes the classic psychometrics´ basic principles of construct and criterion validity, as well as reliability. This is enough for it to be used for its intended purpose. Moreover, it is of great strength, as shown by the high correlation indexes. Based on results, this scale can be considered as a valid, reliable, easily applicable tool. It shows a clear idea, through its five subscales (anxiety, communication, pleasure, adaptation to the surroundings and affection) of the degree of well-being that the patient with dementia shows. It also showcases relational functions of his reactions and behaviours during a multisensory stimulation intervention. This scale’s psychometric properties also show a high correlation with the expert clinician’s impressions.

Regarding its practical use, a relevant fact is that the scale can be graded in two ways. The first one takes into account the three temporal stages during the intervention (beginning of the session, middle of the session and end of the session, with a scoring of 15–75 points). This would be the most advisable, because it provides more information about the individual response of the intervention. This way, the scale allows to capture the variability of responses over time, throughout the session. The second type of scoring evaluates the intervention globally, all at once (5–25 point grading), without losing its psychometric properties. It gives a global vision of the experience lived by the patient with dementia during the session.

The COMMUNI-CARE scale provides cutting points to identify those patients who show a socio-emotional well-being to the intervention to those who, on the contrary, show discomfort or indifference to the intervention. This can be seen through their reactions and behaviours. It can allow the clinician to consider what environmental and/or relational aspects may be intervening, or it may improve the behavioural and emotional response of the patient. Most patients presented globally positive reactions and behaviours to the intervention. However, many circumstances (lack of sleep, pain, hunger, medication, etc.) can make a same patient, at different sessions, show different responses. As described in literature, not all patients respond favourably to the intervention. This is shown in the scale, which enables to chart, throughout time, the different responses to the intervention.

In this study, the scale also generated information that was very valuable to concluding general aspects related to the sessions. Patients with a better global valuation of the interventions have a worse attitude at the beginning than towards the middle. Patients with a worse global valuation of the sessions, on the contrary, tend to worsen during the session, presenting a better attitude towards the session at the beginning than at the end of the session. This observation fully coincides with the one made by other authors, who describe how patients can become agitated during the sessions.

In clinical practice, having a scale to value the intervention makes for an easy and systematic measuring of the ‘experience’ that the patient with dementia lives, inside a multisensory stimulation environment. Up to now, there are only tools that measure isolated behaviours and reactions throughout the intervention. They do not, however, measure the ‘human and relational experience’ of the patient with dementia. The COMMUNI-CARE scale would allow to speak one universal language when evaluating patients with dementia inside multisensory stimulation environments.

In accordance to Staal, Pinkney and Roane, “the ‘Snoezelen’ is a psycho-social, emotion-oriented intervention which addresses imbalances in sensoristasis, or levels of sensory stimulation” (Staal, Pinkney, & Roane, 2003, p. 2). It also assists in coping with the consequences of a progressively debilitating illness (Kovach, 2000). The implementation of this scale does not confront the fundamental idea of the ‘Snoezelen’ creators. They considered that formal and systematic evaluations would lead ‘Snoezelen’ to stray from an aesthetically pleasing, leisure experience to a more clinical and product-oriented pursuit (Staal, Pinkney, & Roane, 2003). Actually, the scale seeks to evaluate communication, as well as emotional and relational response, and thus, the experience of the elderly dementia patient when approached in a multisensory stimulation environment.

The ‘Snoezelen’ becomes a philosophy of caring and an approach. The data obtained from the scoring of ‘Snoezelen’ sessions can be transferred to other environments and interpreted to improve the psycho-emotional well-being of patients with dementia. It can also help sensitize the personnel as to the importance of the relational aspect and the adequate interaction between the environment and the person with dementia. The COMMUNI-CARE scale evaluates essential human dimensions through conducts and behaviours, and, therefore, can even be used as an indicator of psycho-emotional well-being in other types of non-pharmacological therapies, or in the daily psycho-geriatric care. One feature of the scale consists of valuating the response to the relational care of the patient with dementia. In this sense, the COMMUNI-CARE scale allows to show the affective and relational competences that persist in the patient with dementia. Therefore, it may be of great help in non-pharmacological therapies, such as music therapy, sociotherapy, and animal-assisted therapy, among others. Through the scale, the clinician can reflect his feeling and his understanding of the patient through five human dimensions. These will allow him to translate the relational function of his different reactions and behaviours in any therapeutic and care environment. The conducts, behaviours and symptoms of the patients, as much inside as outside a multisensory stimulation environment, have a relational function: COMMUNICATING. The COMMUNI-CARE scale simply tries to translate what the patient with dementia communicates through his behaviour; it also translates the relationship it establishes with its environment. The scale does not look to characterize a state, but rather a symptom, a reaction, a behaviour, a way of being or an experience, in any relational field.

The COMMUNI-CARE scale can also become an indirect measure of how we are approaching our patients on a daily basis, and how we are dealing with their needs as human beings. In that sense, a bad valuation on the COMMUNI-CARE scale can give us a parameter of the life experience and psycho-emotional well-being of the patient with dementia. But on the other hand, it can also be a measure that makes the clinician ask himself what he is doing wrong, or not doing, on his approach to the patient.

In fact, the dimensions of affection, pleasure, anxiety, adaptation to the surroundings and communication, which are the pillars of this scale, are crucial to the global valuation of the well-being of elderly dementia patients, with relational and affective needs. The COMMUNI-CARE scale captures, through psychometrics, a very subjective human experience with a tool that was not available to date.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Author Biographies

José Javier Blanco Lopez, is a Master in Psychogeriatrics from the Autonomous University of Barcelona (Spain). He is currently back in Guatemala, his native country, where he is an Associate Professor of Psychiatry at the Marroquín and San Carlos Universities. He is also Chief of the first Psychogeriatric Clinic in Guatemala, at the Center of Integral Medical Attention for Pensioners (CAMIP 3 Zunil) of the Guatemalan Institute of Social Security (IGSS), as well as an Associate Psychiatrist at the Esperanza University Hospital. During his training in Psychogeriatrics at Sagrat Cor Hospital in Martorell, Barcelona, Spain, from 2011 to 2013, he became interested in relational care and the affective bases of the psychic life of people with dementia, which he continues to investigate and promote in Guatemala.

Juan Carlos Cejudo Bolívar, is an Associate Professor of Neuropsychology at the Autonomous University of Barcelona (Spain), as well as a Neuropsychologist at the Dementia Unit of the Sagrat Cor Hospital in Martorell, Barcelona. He is also a Professor of Master and Post-graduate Courses in Psychogeriatrics from the Autonomous University of Barcelona, a Senior Neuropsychologist collaborator at the Pasqual Maragall Foundation in Barcelona, and a founding partner of Devicare (Medical Home Devices). He serves as a Member of the Board of the Catalonian Society of Neuropsychology, and as a Member of the Spanish Society of Neurology.

Manuel Sánchez Perez, is an Associate Professor of Psychiatry at the Autonomous University of Barcelona and the Coordinator of the Geriatric Psychiatry Service of the Sagrat Cor Hospital in Martorell, Barcelona (Spain). He is currently the Director of the Master and Post-graduate Courses in Psychogeriatrics from the Autonomous University of Barcelona, and a Member of the Board of the Spanish Society of Psychogeriatrics.

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