Abstract
BACKGROUND:
People with advanced Alzheimer’s disease tend to be sedentary and passive unless staff intervene to support their occupation.
OBJECTIVE:
This pilot study assessed the impact of a technology-aided program set up to help participants at the low end of the moderate or at the severe level of the disease access preferred stimulation and carry out simple/basic activities involving the use of everyday objects.
METHODS:
The program (a) relied on the use of a tablet, a voice-recording device, and a mini speaker and (b) provided the participants with verbal and visual instructions to guide them in carrying out the activity steps and accessing preferred stimulation. The program was implemented with five participants according to a nonconcurrent multiple baseline across participants design.
RESULTS:
During the baseline phase (i.e., prior to the use of the program), the participants carried out less than 15% of the activity steps and relied on the research assistants to access preferred stimulation (songs). During the intervention phase (i.e., with the program), the participants’ percentage of activity steps carried out increased to between about 58 and 92. Moreover, all participants were largely successful in accessing preferred stimulation.
CONCLUSIONS:
These results suggest that the technology-aided program used in this study might help increase the level of positive occupation of people with advanced Alzheimer’s disease.
Introduction
Alzheimer’s disease is a neurodegenerative disorder that leads people to a progressive decline of their general condition [1, 2, 3, 4, 5, 6]. People who are affected by the disease, in fact, show a progressive loss of their abilities to (a) deal with time, space, and money, (b) carry out relevant daily activities (i.e., from vocational, recreational, and self-care activities to simple occupational tasks), and (c) orient and walk independently even in familiar indoor areas [7, 8, 9, 10].
Given the greatly negative social and practical implications of the disease for the people who are suffering from it and their contexts, extensive research efforts to find effective intervention strategies have been carried out in the medical/pharmacological area as well as in the behavioral area [2, 11, 12, 13, 14, 15]. The research in the behavioral area has largely focused on procedures to improve general cognitive functioning (e.g., cognitive stimulation, cognitive training and rehabilitation, and reality orientation therapy) as well as procedures aimed at supporting the performance of daily tasks [9, 16, 17, 18, 19]. The ultimate objective of all procedures has been to provide people extra opportunities of functional/positive occupation in their daily context that could temporarily curb the disease’s symptoms and degenerative process and significantly add to the expected effects of common medication products (e.g., acetylcholinesterase inhibitors and memantine [20, 21]) used in these situations [3, 4, 8, 11].
With regard to behavioral research, one may underline that it has principally involved people with mild and moderate Alzheimer’s disease and has increasingly relied on the use of technology solutions to facilitate the achievement of the intervention goals (e.g., independent engagement in daily activities and independent mobility) [9, 14, 22, 23, 24, 25, 26]. People who are at the lower end of the moderate disease or in the severe range of it (i.e, with scores on the Mini Mental State Examination slightly above or below 10 [27, 28]) have attracted relatively limited research attention [29, 30, 31]. Much of the research carried out with these people was directed at enabling them to access preferred environmental stimulation through simple responses (e.g., hand/arm and leg movements) and investigating the impact of such stimulation on their response level and general mood [32, 33].
This pilot study was aimed at extending the research with participants in the low-moderate and severe levels of the disease. Specifically, the intervention program set up for the study was directed at helping the participants not only to access preferred stimulation (as previous research had done), but also to carry out simple, basic activities involving the use of everyday objects through the support of technology-aided verbal and visual instructions [30, 32]. Promoting the performance of basic activities was thought to be relevant to expand the occupational opportunities of these people [30, 31]. Using technology to provide instructions and deliver stimulation was considered relevant to make the intervention program truly practicable in terms of time cost within daily contexts [33]. The technology employed for the program involved a tablet, a voice-recording device, and a mini speaker.
Method
Participants
Seven participants were initially recruited for the study (based on convenience sampling [34]), but two of them were lost very early in the program because of poor health. All participants attended social-medical care centers for people with Alzheimer’s disease and other dementias. Those centers were responsible for the participants’ health and personal care as well as for some forms of basic occupational engagement (e.g., watching television or holding/manipulating objects). Table 1 provides the age and scores on the Mini Mental State Examination [27] for the five participants remaining in the study, who are listed through their pseudonyms. As indicated in the table, the Mini Mental scores were slightly above 10 (i.e., representing the lower end of the moderate stage of the Alzheimer’s disease) for one participant (Nolan) and below 10 (i.e., representing the severe stage of the Alzheimer’s disease) for the other four participants [28].
Participants listed with their pseudonyms, chronological age, and scores on the Mini Mental State Examination
Participants listed with their pseudonyms, chronological age, and scores on the Mini Mental State Examination
Given their serious condition, the participants were generally sedentary and passive unless staff intervened to prompt them to reach and manipulate objects. They were known to enjoy environmental stimulation (i.e., music and songs). They were also considered capable of carrying out simple responses (e.g., putting away common objects), but only if provided with verbal and visual instructions. Those instructions consisted of the verbal request to carry out a response accompanied by the direct or video-mediated demonstration of the response movement. In the first case (direct visual instruction), the response was shown/modeled by a staff member sitting in front of the participant. In the second case (video-mediated visual instruction), the response was modeled by a staff member who appeared on video (e.g., on a tablet or computer screen displayed in front of the participant). Staff and families, who were informed about the program, expressed support for it as they thought it was suitable to help the participants engage in the use of objects and access preferred stimulation in an independent fashion (i.e., independent of staff direct guidance).
The participants appeared willing to be involved in the program and their involvement was considered to be a fairly positive experience for them (i.e., given that the program guided them to perform fairly simple responses and enabled them to access preferred stimulation). Yet, because of their inability to read and sign a consent form, their legal representatives were requested to do it on their behalf. The study complied with the 1964 Helsinki Declaration and its later amendments and was approved by an ethics committee.
Setting, sessions, activities, research assistants, and songs
A quiet area of the social-medical care centers that the participants attended served as setting for the study. Baseline and intervention sessions were carried out for each participant individually typically two or three times a day, 3 days a week. During the sessions, the participants sat at a desk on which they found common objects related to three simple activities that they were expected to perform. The activities included, among others, placing spoons in coffee cups, folding napkins, placing cups in cup holders, placing paper sheets in folders. Activities required between six and nine responses. For example, the participant could have seven spoons to place in seven cups and eight napkins to fold. The number of objects/responses required could have some variations across activities and participants. During baseline sessions, the participants were asked to carry out the activities available and were presented with three music periods (i.e., three songs) by the research assistant (see below).
During the intervention sessions, the participants were presented with the same activity-related objects used in baseline (i.e., so they could carry out the same three activities) and also had a tablet, a voice-recording device, and a mini speaker. The tablet presented verbal and visual instructions to help the participants carry out the activities and access music stimulation (see below). Three research assistants with knowledge in this area were responsible for implementing all baseline and intervention sessions and recording the data.
The songs used during the sessions were selected based on staff advice and a preference screening procedure. This procedure involved the presentation of two 10-s segments of each song for about 10 nonconsective times. A song was selected if the two research assistants carrying out the screening agreed that the participant showed reactions such as orientation, smiling, and positive verbalizations (i.e., reactions considered to indicate satisfaction/preference) during about or more than 50% of the segment presentations [35].
Technology
The technology used for the intervention program involved a Samsung Galaxy Tablet with Android operating system 11, which was linked via Bluetooth to a voice/speech-recording device (Helpitalker, HWCOM50; Mondo Ausili.it) and a mini speaker. The tablet was equipped with Google Assistant and with the MacroDroid application, and supplied with (a) audio files concerning the participants’ preferred songs, and (b) audiovisual files concerning the instructions provided by a female staff member for the single steps of the activities and for accessing music. The voice-recording device had a diameter of 12.5 cm, could be activated through a simple hand-pressure response, and contained the recording of a verbal request for music. The MacroDroid application served to regulate the tablet’s functioning during the intervention sessions. Specifically, it allowed the tablet to present the verbal and visual instructions available for encouraging/prompting the participants to perform each step of the single activities, and to press the voice-recording device following each activity. Pressing the device in those occasions led to the utterance of a verbal request (i.e., “Ok Google, music”). This request activated the tablet’s Google Assistant as well as the MacroDroid application. The latter ensured that one of the participant’s preferred songs (available in the MacroDroid’s list of songs) was selected and played by the tablet for 1.5–2 min. The level of loudness of the tablet’s output (verbal instructions and songs) was regulated through the mini speaker.
At the start of any intervention session, the participant would see the female staff person (i.e., her face and hands) on the tablet screen. The female presented the instruction for the first step of the first activity (e.g., fold a napkin) by verbalizing and modeling the response. She would then continue by presenting the same form of verbal and visual instruction for each of the following steps of the activity (i.e., to help the participants fold each of the napkins included in the activity). The interval between the end of a visual instruction (response modeling) and the beginning of the next instruction would be about 3 s. Once an interval of about 3 s had elapsed from the end of the last instruction to fold a napkin, the female instructed the participant to press the voice-recording device to listen to a song. The instruction could be repeated two or three times. Once the song had ended, the female presented the instruction for the first step of the second activity (e.g., place a spoon in a cup). The whole instruction sequence matched that described for the first activity and was followed by the instruction to press the voice-recording device to listen to a song. The same process was then followed for the third activity and third song.
Measures and data recording
The first two measures recorded during the study were: the number of activity steps the participant carried out and the number of songs the participant activated within each session independently (i.e., free from any research assistant’s guidance). The third measure was the length of the sessions. The frequency of independent activity steps was recorded over the three activities available in the session. Interrater agreement was assessed in at least 35% of the sessions with a reliability observer recording the measures independent of the research assistant in charge of the sessions. The percentage of interrater agreement (computed by dividing the number of sessions in which the research assistant and the reliability observer reported the same number of activity steps carried out, the same number of songs accessed, and session durations differing less than 1.5 min by the total number of sessions in which the two were involved in data recording, and multiplying by 100%) was above 94% for all participants.
Experimental conditions and data analysis
The study was carried out according to a nonconcurrent multiple baseline across participants design [36]. The participants started with a baseline phase, in which the technology was not available, and then were exposed to an intervention phase in which the technology (program) was in use. The baseline phase included between 7 and 11 sessions (with different numbers of sessions used across participants as required by the design). The intervention phase included between 45 and 74 sessions per participant. The difference in numbers of intervention sessions was largely due to participants’ availability. The research assistants were responsible for implementing the sessions and recording the data. To ensure procedural fidelity, two specific actions were taken. The first action consisted of a preliminary preparation/practice on the implementation of baseline and intervention conditions for all research assistants. The second action concerned the involvement of a study supervisor who viewed a variety of sessions (either directly or through video-recordings) and provided the research assistants with feedback and guidance to promote their accurate application of procedural conditions.
The participants’ percentage of activity steps carried out (i.e., correctly/independently) during baseline and intervention was presented in graphic form and summarized over blocks of sessions. The differences between the baseline and intervention data of each participant on this measure were analyzed using the Kolmogorov-Smirnov test [37].
Baseline
During the baseline sessions, the participants were sitting at a desk on which the objects for three activities (e.g., cups and cup holders, napkins, cups and spoons) were displayed. The research assistants mentioned the materials/activities available and asked the participants to carry out one of those activities. After 2–3 min, regardless of whether the participants had carried out the activity, the research assistant started the presentation of a song for 1.5–2 min. At the end of the song, the research assistant asked the participants to carry out a second activity. Again, after 2–3 min, a song was presented independent of whether the participants had carried out the activity. The same process was followed for the third activity available and the last song closing the session.
Intervention
The five panels summarize the participants’ baseline and intervention data concerning the activity steps carried out. The dots represent the mean percentage of activity steps carried out over blocks of two sessions. Blocks of three sessions (i.e., at the end of the phases) are marked with an arrow.
The participants were sitting at a desk and had the same objects/activities as during the baseline sessions. In contrast with the baseline, however, they were provided with the technology system, which functioned as described above (see Section 2.4, Technology). That is, at the start of a session, the system presented the verbal and visual instructions for the performance of each step of the first activity (e.g., for placing the cups in the cup holders). Then, the system presented the verbal and visual instruction to press the voice-recording device (i.e., to perform a response that allowed the participants to access a song). The same pattern was followed for the second activity and song as well as the third activity and song.
During the initial five sessions (i.e., introduction/ practice sessions), the research assistants provided the necessary verbal and physical guidance to help the participants follow the tablet’s instructions (i.e., those related to the activity steps as well as those concerning the activation of the voice-recording device to ask for music). During the subsequent 45 to 74 regular intervention sessions, the research assistants would provide guidance only if the participants failed to respond to the instruction of pressing (activating) the voice-recording device. Such guidance was meant to ensure the availability of all the songs programmed within each session.
The five panels of Fig. 1 summarize the baseline and intervention data regarding the activity steps carried out by the five participants completing the study. Specifically, the dots represent the mean percentage of activity steps carried out over blocks of two sessions. Blocks of three sessions (i.e., at the end of the phases) are marked with an arrow. The panels do not report the five introduction/practice sessions implemented at the beginning of the intervention phase.
As indicated by the figure, the participants’ mean percentage of activity steps carried out during the baseline phase was always below 15. During the intervention phase (i.e., when system-regulated activity step instructions were available), the mean percentage increased for each participant to levels ranging between about 58 (Penny) and 92 (Andrew). In particular, the intervention percentage of activity steps carried out appeared to be higher and somewhat steadier for Andrew, Nolan and Elise than for Henri and Penny. Notwithstanding these variations, the difference between the baseline and intervention levels (i.e., the increase in activity steps carried out from baseline to intervention) was statistically significant (
Discussion
The results suggest that the program and technology system set up for the study helped participants within the low-moderate or severe range of the Alzheimer’s disease to engage in simple activities and access preferred songs independent of staff. These results seem to confirm the relevance of technology-aided interventions for supporting the performance of people with Alzheimer’s disease, and thus increasing their level of occupation and possibly improving the quality of it [22, 23, 24, 25, 26]. In light of the results, a few considerations may be in order.
First, this study was an attempt to use basic technology for an intervention program that would extend the scope of previous programs carried out with people in the severe range of the Alzheimer’s disease [30, 35]. Indeed, while previous programs had mainly focused on helping these people manage simple hand/arm and leg movements to control brief periods of preferred environmental stimulation, this study also focused on helping the same people to carry out simple activities involving the use of everyday objects. Such combination of independent (technology-aided) performance of simple activities and successful access to preferred stimulation seems to represent a more relevant and beneficial form of occupation (requiring the participants a broader physical and behavioral involvement) than the simple hand/arm and leg movements targeted by previous studies [30].
Second, the role of the technology seemed to be critical for the results obtained. In fact, all participants were known to be fairly passive or inconsistent in their responding, as also confirmed by the low percentage of activity responses during the baseline, and their performance could not be expected to improve following a few practice sessions or a slight increase in environmental attention [29, 30, 31]. The systematic use of instructions was most likely instrumental to support the participants’ responding [30]. At the same time, the stimulation periods (songs) may have been crucial for promoting the participants’ alertness and motivation thus increasing the efficacy of the instructions [38]. With regard to the instructions, it is reasonable to assume that their visual component (i.e., the response video modeling component) may have played a critical role. Although no data on this aspect were gathered in the present study, previous literature on the effects of video prompting seems to support such an assumption [8, 30, 39].
Third, the technology system set up in this study appears quite accessible. In fact, the tablet, voice-recording device, mini speaker, and MacroDroid are all commercially available and their cost (i.e., a total of about US$ 500) may be considered affordable for most social-medical centers providing care and support to people with low-moderate or severe levels of Alzheimer’s disease [40, 41, 42]. With regard to this point, it may also be argued that a single technology system could be used for several participants during the day. This point would further improve the relationship between the cost and the effectiveness of the system.
Study limitations and conclusion
Three main limitations of this study can be pointed out. First, the study included a small number of participants and this makes any general statement about the effectiveness of the program premature. New studies would need to carry out direct and systematic replications of the present work to (a) verify the strength and generality of the present data, (b) assess the possible impact of the intervention on other areas of the participants’ behavior (e.g., mood) and eventually (c) upgrade the technology system [43, 44]. Second, the study was carried out over a relatively small number of sessions (i.e., a short period of time) and thus cannot provide information as to how long the effects of the intervention may be maintained. New research should increase the length of the intervention phase to determine the duration of the program effects as well as the possible range of individual differences regarding this aspect [38, 43]. Third, the study did not include a social validation of the program and the technology system used for it. Such validation could be carried out by interviewing staff personnel who work with people in an advanced stage of the Alzheimer’s disease. The interview could consist of presenting staff with video clips of the intervention sessions and asking them to rate the content of those clips in terms of program relevance and applicability [45, 46].
In conclusion, the results suggest that the technology-aided program was effective in helping people with advanced Alzheimer’s disease engage in simple activities and access preferred songs. While the results are encouraging, the preliminary nature of this study and its limitations prevent one from making general statements about the program and its usability until new research evidence is available.
Author contributions
CONCEPTION: FDA and GL.
PERFORMANCE OF WORK: FDA, GL, FDM, FA, PT, CA, and LD.
INTERPRETATION OR ANALYSIS OF DATA: FDA, GL, FDM, FA, PT, CA, and LD.
PREPARATION OF THE MANUSCRIPT: FDA, GL, FDM, FA, PT, CA, and LD.
REVISION FOR IMPORTANT INTELLECTUAL CONTENT: FDM, FA, PT, CA, and LD.
Ethical considerations
The study was approved by the ethics committee of the “Alzheimer Bari” Association, Bari, Italy. All procedures performed were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. The participants’ legal representatives provided written informed consent for the participants’ involvement in the study.
Footnotes
Acknowledgments
The authors have no acknowledgments.
Conflict of interest
The authors report no conflicts of interest.