a computer-aided telephone system to enable five persons with alzheimer's disease to make phone...

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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 b American Health and Wellness Institute, Raleigh, NC, USA c 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 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). Research in Developmental Disabilities 34 (2013) 1991–1997 A R T I C L E I N F O Article history: Received 14 March 2013 Accepted 14 March 2013 Available online 12 April 2013 Keywords: Computer-aided telephone Alzheimer’s disease Phone calls Social validation assessment A B S T R A C T 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 non- concurrent 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. * 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). Contents lists available at SciVerse ScienceDirect Research in Developmental Disabilities 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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Research in Developmental Disabilities 34 (2013) 1991–1997

Contents lists available at SciVerse ScienceDirect

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, Italyb American Health and Wellness Institute, Raleigh, NC, USAc Meadows Center for Preventing Educational Risk, University of Texas at Austin, USAd Victoria University of Wellington, New Zealande Lega F. D’Oro Research Center, Osimo, Italy

A R T I C L E I N F O

Article history:

Received 14 March 2013

Accepted 14 March 2013

Available online 12 April 2013

Keywords:

Computer-aided telephone

Alzheimer’s disease

Phone calls

Social validation assessment

A B S T R A C T

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 non-

concurrent 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.

� 2013 Elsevier Ltd. All rights reserved.

1. Introduction

Alzheimer’s disease is an age-related progressive neurodegenerative disorder associated with an increasing loss ofcognitive 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 diseaseexperiences a progressive impairment in occupational functioning, that (a) begins with the decline in the ability to performthe most complex ‘‘instrumental’’ activities of daily living, and (b) continues with the loss of most of the other basic dailyactivities 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 � 2013 Elsevier Ltd. All rights reserved.

http://dx.doi.org/10.1016/j.ridd.2013.03.016

V. Perilli et al. / Research in Developmental Disabilities 34 (2013) 1991–19971992

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; Lancioniet al., 2011, 2013), preparing food and drinks (Baum & Edwards, 1993; Lancioni et al., 2009, 2010; Melrose et al., 2011), andmaking use of common communication means, such as the telephone (Ala, Berck, & Popovich, 2005; Loewenstein et al.,1995; Nygard & 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 ofbehavioral 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 thepatients 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 withmoderate 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 helppatients with the aforementioned levels of the disease recapture daily activities concerning food preparation and self-grooming (Lancioni et al., 2009, 2010). Results of those strategies have been generally encouraging and have shown that thepatients can achieve goals considered to be beyond their immediate functioning. In fact, the technology support can helpthem 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 familymembers and friends, independently (Perilli et al., 2012). The patient was allowed to select a target person for the phone callvia a simple microswitch response in relation to the name and photo of that person, and did not have to remember theperson’s telephone number or to dial such number. Specifically, the first activation of the microswitch caused the technologysystem to (a) name (verbally identify) persons that the patient might want to call (i.e., one at a time), and simultaneouslyshow 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 telephoneprogram to five new patients with Alzheimer’s disease, so as to determine whether the previous findings on the effectivenessof such a program could be confirmed, and (b) carrying out a social validation assessment of such program versus aconventional 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 ofage. Carol, Anne and Mary were considered to function within the moderate range of Alzheimer’s disease, whereas Dyaneand 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-itemversion) (Bagby, Ryder, Schuller, & Marshall, 2004) were between 11 and 16 (M = 13), suggesting mild depression for allpatients. Pharmacological treatment for the Alzheimer’s condition, at the time of the study, was available in the form ofacetylcholinesterase inhibitors for Carol and Mary and memantine for the others. They were not able to use a telephonedevice independently and required the assistance of caregivers to make phone calls. However, they were reported to havesufficient hearing and visual functioning to understand verbal and visual instructions, and to possess sufficientcommunication skills for phone conversation. They attended a day center for persons with Alzheimer’s disease and otherdementias, in which they were provided with some supervised activity involvement as well as interaction opportunitieswith peers, staff and relatives. The development of a computer-aided telephone system enabling them to make phone callsindependently was considered highly desirable by their caregivers and by staff personnel. The study was approved by ascientific 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 aday and were set to last 10 min. The patients however were allowed to complete any call, which was still in progress by theend of the 10-min period. The measures recorded during the sessions were (a) the total number of phone calls made andwhether the patients made them independently (see below), (b) the number of phone calls which were answered by thetarget 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 themeasures during those sessions. The percentages of agreement on the single measures (computed over groups of three to fivesessions by dividing the total number of agreements by the total number of agreements and disagreements and multiplying

V. Perilli et al. / Research in Developmental Disabilities 34 (2013) 1991–1997 1993

by 100) showed means above 90 for all patients. Agreements on the length of the conversations allowed an interraterdiscrepancy 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-bookcomputer, a global system for mobile communication modem (GSM), a microswitch to enable the patients to activate thecomputer, an interface connecting the microswitch and modem to the computer, a headset with microphone (allowing thepatients 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 InpriseCorporation, 2005) ensured that the computer would (a) present verbal identification and photos of the partners available forphone conversations, according to pre-programmed sequences and schemes, and respond to microswitch activations toplace phone calls to selected partners (see below). The microswitch used for the patients was a pressure device that theycould 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 computersystem to go through the list of the partners available. For each partner, the computer (a) verbally presented the name orother identification (e.g., ‘‘Robert’’ or ‘‘your son’’) while showing the partner’s photo on its screen and (b) added that to callhim or her the patient was to touch the pressure device. The combination of verbal identification and photo had seemed amore 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 thecomputer to place a call to that partner. The partner’s photo was on display throughout the phone conversation (see Perilliet al., 2012). Abstaining from activating the pressure device led the computer to present the next partner of the list. After theend 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 proceedingto 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 abaseline followed by the intervention program. Following the completion of the study, a social validation assessment wascarried 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 thesessions, the research assistant asked the patients to make phone calls using a desk or a mobile telephone device. The patientsdid 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 thecomputer-aided telephone system (i.e., by understanding/relying on the verbal and visual presentations of the partners andperforming timely microswitch responses). These practice sessions were followed by 20 regular intervention sessions forDyane and Anne, and 50 regular intervention sessions for Carol, Lily and Mary. During these sessions, the patients wererequired to perform independently. Verbal and physical prompting by the research assistant occurred only if the patientsfailed 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 ofpartners 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 withdementia. These professionals, who represented a convenience sample (Pedhazur & Schmelkin, 1991), were divided into fivegroups of seven. Each group rated the performance of one of the five patients after watching a 6-min video-recording, whichcontained (a) a 3-min segment of the patient using a standard phone device with the assistance of a caregiver (i.e., as ittypically occurred in the baseline and before the study) and (b) a 3-min segment of the patient using the computer-aidedtelephone system. The order of the segments changed across raters. The segments were selected by the research assistantsand were considered representative of the patients’ performance within the two conditions. The rating was carried outthrough a five-item questionnaire (see Table 1). The items concerned the patient’s independence, comfortableness, andsocial image, as well as issues of usefulness/practicality and raters’ personal interest/support. On each item, the rating couldvary from 1 to 5, which represented least and most positive values, respectively.

Table 1

Questionnaire items.

1. Do you think that this condition is relevant/beneficial for the patient’s independence?

2. Do you think that the patient is comfortable in this condition?

3. Do you think that this condition is practical for the daily context?

4. Do you personally support (agree with) this condition?

5. Do you think that this condition promotes the patient’s social image?

V. Perilli et al. / Research in Developmental Disabilities 34 (2013) 1991–19971994

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 meanfrequencies of phone calls met with an answer from the partner targeted, respectively, over blocks of sessions. The firstbaseline block (available for all patients) included three sessions. The second baseline block (available only for Carol, Lily, andMary) included two sessions. Each of the intervention blocks included five sessions. The circles represent the meanconversation 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 theresearch assistant to minimize frustration; see above). Thus the figure provides zero values for all three measures (i.e., thefrequencies 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 (withindividual means varying between about three and a half and four and a half phone calls; see Fig. 1). The overall mean ofphone calls answered by the target partners was between approximately two and a half and three (i.e., roughly the individual

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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.

V. Perilli et al. / Research in Developmental Disabilities 34 (2013) 1991–1997 1995

means of the patients). The mean cumulative conversation time per session across patients was about 7 min (i.e., with thelast call typically ending beyond the 10-min preset session time). Phone calls made with the guidance of the researchassistant (i.e., not independent and thus non reported in the figure) were very sporadic and basically confined to the initialsessions of the intervention phase.

Table 2 summarizes the results of the social validation assessment. The table shows the raters’ mean scores and standarddeviations for the single questionnaire items across the two phone conditions. The 35 raters’ mean scores for the five items ofthe questionnaire varied between 3.80 and 4.63 in relation to the use of the computer-aided telephone system and between1.97 and 2.74 in relation to the staff assistance. The score differences between the two conditions, assessed with paired t-tests, 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 andsuccessfully (Perilli et al., 2012). Indeed, all five patients seemed to acquire this ability quite easily and could use thetechnology to communicate with their distant partners successfully (Lancioni, Singh, et al., 2012). The social validation dataseemed to be highly supportive of the computer-aided system, as it was used during the intervention, and underlined (a) itsvalue in enhancing the patients’ independence, comfortableness, and social image, (b) its overall practicality and usefulnessin daily contexts, as well as (c) the raters’ personal preference for it (i.e., as opposed to conventional forms of caregiverguidance applied to help the patients make phone calls). In light of the findings, a number of considerations might be inorder.

First, the computer-aided telephone system was largely effective in allowing the patients to be successful andcomfortable basically because it simplified their task in a very considerable and obvious manner (Malinowsky, Almkvist,Kottorp, & Nygard, 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 dialingthe telephone numbers of the partners that they wanted to call). The recaptured (technology-supported) ability to contactrelevant partners independently and to communicate with them freely could be considered a highly relevant achievementfor the patients. It apparently provided them a sense of fulfillment and satisfaction, improved their self-determination, andraised 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 toappreciate and more interesting to pursue given the fact that the system’s cost might be fairly affordable within day centersand 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 italso occurred within this study). In practice, one computer-aided telephone system could easily allow different patients of aday 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 thefocus of new research efforts. The computer system could, for example, ensure that each partner available for a call identifieshim- or herself directly (i.e., through a recorded video-clip). This self-identification of the partners could be much more vividfor the patient than the solution used in this and the previous study (i.e., a general verbal presentation of the partnerscombined with their photos). A more vivid solution, such as the one suggested, could be preferred by the patients and couldhelp them maintain a purposeful selection of their partners for a longer period of time. Obviously, such a suggestion, whichwould be relatively easy to arrange from a technical/procedural standpoint, should be assessed. One could use the twosolutions 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 Staff assistance

M SD M SD

1 4.14 0.83 1.97 1.06

2 3.80 1.14 2.40 0.96

3 4.26 0.73 2.43 0.99

4 4.03 0.84 2.29 1.28

5 4.63 0.59 2.74 1.13

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

V. Perilli et al. / Research in Developmental Disabilities 34 (2013) 1991–19971996

solutions they prefer), and also (b) monitor the patients’ selection of partners across the two solutions over time to determinewhether differences exist (Lancioni, Singh, et al., 2012).

Fourth, three other target issues for new research might concern (a) the possibility of using videophone contacts and acomparison of those contacts with regular telephone conversations in terms of patients’ performance and preference, (b) aninvestigation of the effects of telephone conversations, and possible videophone contacts, on the general mood of thepatients, and (c) a validation assessment of active telephone (or videophone) use with the patients’ partners (i.e., familymembers, friends, and caregivers) serving as general raters (Barlow et al., 2009; Callahan et al., 2008; Lancioni, Singh, et al.,2012; Yuan et al., 2010).

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