A computer-aided telephone system to enable five ...

Research in Developmental Disabilities 34 (2013) 1991–1997

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Research in Developmental Disabilities

A computer-aided telephone system to enable five persons with Alzheimer’s disease to make phone calls independently Viviana Perilli a, Giulio E. Lancioni a,*, Dominga Laporta a, Adele Paparella a, Alessandro O. Caffo` a, Nirbhay N. Singh b, Mark F. O’Reilly c, Jeff Sigafoos d, Doretta Oliva e a

University of Bari, Italy American Health and Wellness Institute, Raleigh, NC, USA Meadows Center for Preventing Educational Risk, University of Texas at Austin, USA d Victoria University of Wellington, New Zealand e Lega F. D’Oro Research Center, Osimo, Italy b c

A R T I C L E I N F O

A B S T R A C T

Article history: Received 14 March 2013 Accepted 14 March 2013 Available online

This study extended the assessment of a computer-aided telephone system to enable five patients with a diagnosis of Alzheimer’s disease to make phone calls independently. The patients were divided into two groups and exposed to intervention according to a nonconcurrent multiple baseline design across groups. All patients started with baseline in which the technology was not available, and continued with intervention in which the technology was used. The technology involved a net-book computer provided with specific software, a global system for mobile communication modem (GSM), a microswitch, and lists of partners to call with related photos. All the patients learned to use the system and made phone calls independently to a variety of partners, such as family members, friends, and caregivers. A social validation assessment, in which care and health professionals working with persons with dementia were asked to rate the patients’ performance with the technology and with the help of a caregiver, provided generally more positive scores for the technology-assisted performance. The positive implications of the findings for daily programs of patients with Alzheimer’s disease are discussed. ß 2013 Elsevier Ltd. All rights reserved.

Keywords: Computer-aided telephone Alzheimer’s disease Phone calls Social validation assessment

1. Introduction Alzheimer’s disease is an age-related progressive neurodegenerative disorder associated with an increasing loss of cognitive and intellectual abilities, a variety of behavioral symptoms, and a decline in physical functioning (Delavande, Hurd, Martorell, & Langa, 2013; Gure, Kabeto, Plassman, Piette, & Langa, 2010; Lancioni, Perilli et al., 2012; Lleo´, 2007; Niedowicz, Nelson, & Murphy, 2011; Serra et al., 2010; Wilson, Rochon, Mihailidis, & Leonard, 2012). A person with Alzheimer’s disease experiences a progressive impairment in occupational functioning, that (a) begins with the decline in the ability to perform the most complex ‘‘instrumental’’ activities of daily living, and (b) continues with the loss of most of the other basic daily activities with the consequence of increasing dependence on external assistance (Andersen, Wittrup-Jensen, Lolk, Andersen, & Kragh-Sørensen, 2004; Farias et al., 2006; Jefferson, Paul, Ozonoff, & Cohen, 2006; Marshall et al., 2011; Martyr & Clare, 2012; Nadkarni, Levy-Cooperman, & Black, 2012).

* Corresponding author at: Department of Neuroscience and Sense Organs, University of Bari, Via Quintino Sella 268, 70100 Bari, Italy. Tel.: +39 0805521410. E-mail address: [email protected] (G.E. Lancioni). 0891-4222/$ – see front matter ß 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ridd.2013.03.016

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V. Perilli et al. / Research in Developmental Disabilities 34 (2013) 1991–1997

In practice, a person with Alzheimer’s disease is known to lose, among others, the skills required for handling finances (Marson et al., 2000), managing medication (Cotrell, Wild, & Bader, 2006), orienting and traveling (Caffo` et al., 2012; Lancioni et al., 2011, 2013), preparing food and drinks (Baum & Edwards, 1993; Lancioni et al., 2009, 2010; Melrose et al., 2011), and making use of common communication means, such as the telephone (Ala, Berck, & Popovich, 2005; Loewenstein et al., 1995; Nyga˚rd & Starkhammar, 2003, 2007; Perilli et al., 2012; Selwyn, 2003; Selwyn, Gorard, Furlong, & Madden, 2003). In the attempt to slow down a person’s deterioration and maintain basic adaptive skills for a longer time, a variety of behavioral intervention procedures have been practiced in programs for patients with Alzheimer’s disease (e.g., procedures that involve reality orientation exercises, memory training, and stimulation enrichment; see Bier et al., 2008; Boller, Jennings, Dieudonne´, Verny, & Ergis, 2012; Silverstein & Sherman, 2010; Small, 2012; Takeda, Tanaka, Okochi, & Kazui, 2012; Zanetti et al., 2001). Procedures have also been devised that directly target daily living skills and help the patients carry them out through technology-aided support strategies (Lancioni, Perilli, et al., 2012; Mihailidis, Boger, Canido, & Hoey, 2007). For example, technology-aided instruction strategies have been reported to help patients with moderate levels of the disease recapture basic self-help skills, such as morning routines and dressing (Lancioni et al., 2008, 2009, 2010). Similar technology-aided strategies based on verbal and pictorial instructions have also been reported to help patients with the aforementioned levels of the disease recapture daily activities concerning food preparation and selfgrooming (Lancioni et al., 2009, 2010). Results of those strategies have been generally encouraging and have shown that the patients can achieve goals considered to be beyond their immediate functioning. In fact, the technology support can help them remember and perform sequences of steps that their actual memory skills can no longer ensure (Lancioni, Perilli, et al., 2012; Mihailidis et al., 2007). Recently, a technology-aided program has also been assessed for helping those patients make phone calls to family members and friends, independently (Perilli et al., 2012). The patient was allowed to select a target person for the phone call via a simple microswitch response in relation to the name and photo of that person, and did not have to remember the person’s telephone number or to dial such number. Specifically, the first activation of the microswitch caused the technology system to (a) name (verbally identify) persons that the patient might want to call (i.e., one at a time), and simultaneously show their photos. Microswitch activation in relation to a specific person led the system to place a phone call to that person (thus allowing the patient to have a conversation with him or her) (Perilli et al., 2012). The present study had two main aims, namely (a) extending the use of the aforementioned technology-aided telephone program to five new patients with Alzheimer’s disease, so as to determine whether the previous findings on the effectiveness of such a program could be confirmed, and (b) carrying out a social validation assessment of such program versus a conventional condition of telephone assistance, with professionals working in the area of dementia employed as social raters (see Callahan, Henson, & Cowan, 2008; Kennedy, 2005; Lancioni et al., 2006). 2. Method 2.1. Participants The five patients (Dyane, Anne, Carol, Lily, and Mary) participating in this study were between 73 and 89 (M = 80) years of age. Carol, Anne and Mary were considered to function within the moderate range of Alzheimer’s disease, whereas Dyane and Lily were deemed to be within the mild range. Their scores on the Mini-Mental State Examination (Folstein, Folstein, & McHugh, 1975) were between 14 and 22, with a mean of 18. Their scores on the Hamilton depression rating scale (17-item version) (Bagby, Ryder, Schuller, & Marshall, 2004) were between 11 and 16 (M = 13), suggesting mild depression for all patients. Pharmacological treatment for the Alzheimer’s condition, at the time of the study, was available in the form of acetylcholinesterase inhibitors for Carol and Mary and memantine for the others. They were not able to use a telephone device independently and required the assistance of caregivers to make phone calls. However, they were reported to have sufficient hearing and visual functioning to understand verbal and visual instructions, and to possess sufficient communication skills for phone conversation. They attended a day center for persons with Alzheimer’s disease and other dementias, in which they were provided with some supervised activity involvement as well as interaction opportunities with peers, staff and relatives. The development of a computer-aided telephone system enabling them to make phone calls independently was considered highly desirable by their caregivers and by staff personnel. The study was approved by a scientific and ethics committee and received formal consent from the patients’ families. 2.2. Setting, sessions, and data collection A quiet room of the day center that the patients attended served as setting for the study. Sessions occurred once or twice a day and were set to last 10 min. The patients however were allowed to complete any call, which was still in progress by the end of the 10-min period. The measures recorded during the sessions were (a) the total number of phone calls made and whether the patients made them independently (see below), (b) the number of phone calls which were answered by the target partners, and (c) the length of the phone conversations. Interrater reliability was assessed in about 30% of the sessions (for Carol, Lily, and Mary) or about 50% of the sessions (for Dyane and Anne) by having two research assistants record the measures during those sessions. The percentages of agreement on the single measures (computed over groups of three to five sessions by dividing the total number of agreements by the total number of agreements and disagreements and multiplying


1993

by 100) showed means above 90 for all patients. Agreements on the length of the conversations allowed an interrater discrepancy of 20 s. 2.3. Computer-aided telephone system and responses The computer-aided telephone system was the same as that used by Perilli et al. (2012). It consisted of a net-book computer, a global system for mobile communication modem (GSM), a microswitch to enable the patients to activate the computer, an interface connecting the microswitch and modem to the computer, a headset with microphone (allowing the patients to maintain the communication emissions of their partners private), and a specifically developed software program (Lancioni, Perilli, et al., 2012; Perilli et al., 2012). This program (written with Borland Delphi Developer Studio, from Inprise Corporation, 2005) ensured that the computer would (a) present verbal identification and photos of the partners available for phone conversations, according to pre-programmed sequences and schemes, and respond to microswitch activations to place phone calls to selected partners (see below). The microswitch used for the patients was a pressure device that they could activate with a small hand contact. The system’s functioning was identical across all patients, but the numbers of partners available for them to call (i.e., family members, friends, and caregivers) varied between 8 and 12. The initial microswitch activation led the computer system to go through the list of the partners available. For each partner, the computer (a) verbally presented the name or other identification (e.g., ‘‘Robert’’ or ‘‘your son’’) while showing the partner’s photo on its screen and (b) added that to call him or her the patient was to touch the pressure device. The combination of verbal identification and photo had seemed a more secure manner to obtain the patient’s attention on and fast discrimination of the partner presented (see Perilli et al., 2012). Touching/activating the pressure device within 4–5 s from a partner’s presentation sequence (see above) led the computer to place a call to that partner. The partner’s photo was on display throughout the phone conversation (see Perilli et al., 2012). Abstaining from activating the pressure device led the computer to present the next partner of the list. After the end of a conversation with a partner or subsequent to contact failure (i.e., in case of a busy signal or the answering machine), the patient was to activate the pressure device/microswitch to disconnect the line and make the system ready for proceeding to a new call. 2.4. Experimental conditions The study was carried out according to a non-concurrent multiple baseline design across patients (Barlow, Nock, & Hersen, 2009). The patients were divided into two groups of two and three members, respectively. Both groups started with a baseline followed by the intervention program. Following the completion of the study, a social validation assessment was carried out (see below). 2.4.1. Baseline phase The baseline phase included three sessions for Dyane and Anne, and five sessions for Carol, Lily and Mary. During the sessions, the research assistant asked the patients to make phone calls using a desk or a mobile telephone device. The patients did not have the assistance of any technology and were not expected to make phone calls on their own. To minimize frustration, the research assistant helped them to identify somebody to call and to place a call to that partner during each session. 2.4.2. Intervention phase The intervention phase was introduced by five practice sessions aimed at familiarizing the patients with the use of the computer-aided telephone system (i.e., by understanding/relying on the verbal and visual presentations of the partners and performing timely microswitch responses). These practice sessions were followed by 20 regular intervention sessions for Dyane and Anne, and 50 regular intervention sessions for Carol, Lily and Mary. During these sessions, the patients were required to perform independently. Verbal and physical prompting by the research assistant occurred only if the patients failed to (a) trigger the computer to present the list of partners (for 1–2 min) and (b) select a partner to call (after the list of partners was presented twice). 2.5. Social validation assessment The social validation assessment was based on the ratings of 35 care and health professionals working with persons with dementia. These professionals, who represented a convenience sample (Pedhazur & Schmelkin, 1991), were divided into five groups of seven. Each group rated the performance of one of the five patients after watching a 6-min video-recording, which contained (a) a 3-min segment of the patient using a standard phone device with the assistance of a caregiver (i.e., as it typically occurred in the baseline and before the study) and (b) a 3-min segment of the patient using the computer-aided telephone system. The order of the segments changed across raters. The segments were selected by the research assistants and were considered representative of the patients’ performance within the two conditions. The rating was carried out through a five-item questionnaire (see Table 1). The items concerned the patient’s independence, comfortableness, and social image, as well as issues of usefulness/practicality and raters’ personal interest/support. On each item, the rating could vary from 1 to 5, which represented least and most positive values, respectively.


1994 Table 1 Questionnaire items. 1. 2. 3. 4. 5.

Do Do Do Do Do

you you you you you

think that this condition is relevant/beneficial for the patient’s independence? think that the patient is comfortable in this condition? think that this condition is practical for the daily context? personally support (agree with) this condition? think that this condition promotes the patient’s social image?

3. Results The five panels of Fig. 1 summarize the baseline and intervention data of Dyane, Anne, Carol, Lily, and Mary, respectively. Within each panel, the bars and black squares represent mean frequencies of phone calls made independently and mean frequencies of phone calls met with an answer from the partner targeted, respectively, over blocks of sessions. The first baseline block (available for all patients) included three sessions. The second baseline block (available only for Carol, Lily, and Mary) included two sessions. Each of the intervention blocks included five sessions. The circles represent the mean conversation time per session (across all phone calls) over the aforementioned blocks of sessions. During the baseline sessions, none of the patients made independent phone calls (the only phone call was arranged by the research assistant to minimize frustration; see above). Thus the figure provides zero values for all three measures (i.e., the frequencies of telephone calls made independently, the frequencies of telephone calls answered, and the conversation time). During the intervention phase, the patients made an overall mean of nearly four independent phone calls per session (with individual means varying between about three and a half and four and a half phone calls; see Fig. 1). The overall mean of phone calls answered by the target partners was between approximately two and a half and three (i.e., roughly the individual

6

BASELINE

[(Fig._1)TD$IG]

INTERVENTION DYANE

6

2

3

0

0

6

9

ANNE

4

6

2

3 0

0

CAROL

6

9

4

6

2

3

0

0

LILY 6

9

4

6

2

3

0

Mean Conversation Time

Mean Frequencies of Phone Calls

9

4

0

MARY

6

9

4

6

2

3

0

0

1

2

3

4

5

6

7

8

9

10

11

12

Blocks of Sessions Fig. 1. The five panels of the figure summarize the baseline and intervention data of Dyane, Anne, Carol, Lily, and Mary, respectively. Within each panel, the bars and black squares represent mean frequencies of phone calls made independently and mean frequencies of phone calls met with an answer from the partner targeted, respectively, over blocks of sessions. The first baseline block (available for all patients) included three sessions. The second baseline block (available for Carol, Lily, and Mary) included two sessions. Each of the intervention blocks included five sessions. The circles represent the mean conversation time per session (across all phone calls) over the aforementioned blocks of sessions.


1995

means of the patients). The mean cumulative conversation time per session across patients was about 7 min (i.e., with the last call typically ending beyond the 10-min preset session time). Phone calls made with the guidance of the research assistant (i.e., not independent and thus non reported in the figure) were very sporadic and basically confined to the initial sessions of the intervention phase. Table 2 summarizes the results of the social validation assessment. The table shows the raters’ mean scores and standard deviations for the single questionnaire items across the two phone conditions. The 35 raters’ mean scores for the five items of the questionnaire varied between 3.80 and 4.63 in relation to the use of the computer-aided telephone system and between 1.97 and 2.74 in relation to the staff assistance. The score differences between the two conditions, assessed with paired ttests, were statistically significant for all items of the questionnaire with t-values ranging from 6.21 to 10.70 (p < 0. 01) (Hastie, Tibshirani, & Friedman, 2009). 4. Discussion The results of the intervention extend the evidence available on the overall reliability/dependability of the approach used (i.e., computer-aided telephone system) to enable people with Alzheimer’s disease to make phone calls independently and successfully (Perilli et al., 2012). Indeed, all five patients seemed to acquire this ability quite easily and could use the technology to communicate with their distant partners successfully (Lancioni, Singh, et al., 2012). The social validation data seemed to be highly supportive of the computer-aided system, as it was used during the intervention, and underlined (a) its value in enhancing the patients’ independence, comfortableness, and social image, (b) its overall practicality and usefulness in daily contexts, as well as (c) the raters’ personal preference for it (i.e., as opposed to conventional forms of caregiver guidance applied to help the patients make phone calls). In light of the findings, a number of considerations might be in order. First, the computer-aided telephone system was largely effective in allowing the patients to be successful and comfortable basically because it simplified their task in a very considerable and obvious manner (Malinowsky, Almkvist, Kottorp, & Nyga˚rd, 2010; Perilli et al., 2012). In essence, it (a) guided them through the list of partners that they could call, and (b) eliminated requirements that they would have had serious problems with (i.e., remembering, retrieving or dialing the telephone numbers of the partners that they wanted to call). The recaptured (technology-supported) ability to contact relevant partners independently and to communicate with them freely could be considered a highly relevant achievement for the patients. It apparently provided them a sense of fulfillment and satisfaction, improved their self-determination, and raised their social status and appreciation from others (Brown, Schalock, & Brown, 2009; Friedman, Wamsley, Liebel, Saad, & Eggert, 2009; Scherer, Craddock, & Mackeogh, 2011; Sunderland, Catalano, & Kendall, 2009). Second, the potential benefits of a computer-aided telephone system, such as that used in this study, become easier to appreciate and more interesting to pursue given the fact that the system’s cost might be fairly affordable within day centers and other care contexts (De Joode, van Heugten, Verhey, & van Boxtel, 2010; Yuan, Archer, Connelly, & Zheng, 2010). Indeed, the cost of the prototype used in this study and in the pilot study by Perilli et al. (2012) could be estimated at about US$2000. One additional aspect that makes the system practically agreeable is that its use might be shared among patients (i.e., as it also occurred within this study). In practice, one computer-aided telephone system could easily allow different patients of a day center to place their own phone calls during the day with minimal time investment from caregivers and staff in general (De Joode et al., 2010; Friedman et al., 2009). Third, the present technology and procedural conditions (i.e., the same as in the study by Perilli et al., 2012) could be the focus of new research efforts. The computer system could, for example, ensure that each partner available for a call identifies him- or herself directly (i.e., through a recorded video-clip). This self-identification of the partners could be much more vivid for the patient than the solution used in this and the previous study (i.e., a general verbal presentation of the partners combined with their photos). A more vivid solution, such as the one suggested, could be preferred by the patients and could help them maintain a purposeful selection of their partners for a longer period of time. Obviously, such a suggestion, which would be relatively easy to arrange from a technical/procedural standpoint, should be assessed. One could use the two solutions in alternating fashion and (a) carry out preference checks to determine the patients’ view (i.e., which of the two

Table 2 Raters’ mean scores (M) and standard deviations (SD) on the questionnaire items for the two phone conditions. Items

Conditions Computer-aided Telephone

1 2 3 4 5

Staff assistance

M

SD

M

SD

4.14 3.80 4.26 4.03 4.63

0.83 1.14 0.73 0.84 0.59

1.97 2.40 2.43 2.29 2.74

1.06 0.96 0.99 1.28 1.13

Note: Rating scale used anchors of 1: very low and 5: very high.

1996


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