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Stacey L. Schepens Niemiec, Elissa Lee, Raquel Saunders, Rafael Wagas &
Shinyi Wu
To cite this article: Stacey L. Schepens Niemiec, Elissa Lee, Raquel Saunders, Rafael
Wagas & Shinyi Wu (2022): Technology for activity participation in older people with mild
cognitive impairment or dementia: expert perspectives and a scoping review, Disability and
Rehabilitation: Assistive Technology, DOI: 10.1080/17483107.2022.2116114
REVIEW
CONTACT Stacey L. Schepens Niemiec schepens@usc.edu Chan Division of Occupational Science and Occupational Therapy, University of Southern California,
1540 Alcazar St, CHP-133, Los Angeles, CA 90089-9003, USA
Supplemental data for this article can be accessed online at https://doi.org/10.1080/17483107.2022.2116114.
� 2022 Informa UK Limited, trading as Taylor & Francis Group
2 S. L. SCHEPENS NIEMIEC ET AL.
wellbeing [4, p.640] – suffers in consequence. Getting dressed in satisfies the activity participation needs of the individual and opti-
the morning, planning a trip to the grocery store, having an mally supports actualization of their performance potential [19].
intimate conversation with others, achieving restful sleep, or To our knowledge, no study has applied the HAAT model to sum-
enjoying a favourite pastime occupation can become arduous, if marize and characterize the state of science and practice in the
not impossible. area of DHT use by PwMCI/ADRD.
Technological developments in the assistive technology arena This study aims to collate, synthesize and characterize –
have been extensively and increasingly studied for integration into through the lens of a person-centred, occupation-based frame-
ADRD care [5], particularly in the areas of cognitive assessment, cog- work and using a convergent design – evolving research and
nitive stimulation and assistance for daily activities [6,7]. A 2015 practice featuring activity participation-supportive DHT for direct
review of assistive technology for ADRD demonstrated that technol- use by older PwMCI/ADRD. The overarching goal of this study is
ogy (at that time) was primarily focused on memory aids, safety to complement and expand the work in this area, identifying
and day-to-day tasks (i.e., food/kitchen tasks and personal hygiene); opportunities for future research that can help bridge the multidi-
very few innovations addressed leisure or recreational participation mensional digital divide and bring cutting-edge DHT to diverse
[8]. This trend was observed once again in a later review suggesting older adults of the MCI/ADRD community in support of meaning-
mobile health (mHealth) technologies tended to support basic ful activity participation.
rather than higher-level human needs of PwADRD [9].
In the wake of COVID-19, technology-driven interventions have
Methods
become progressively vital to individuals’ health and function,
while simultaneously exacerbating persistent digital inequities This study utilized a two-phase design that included a scoping
[10]. Older people, especially those with disabilities and from review and expert interviews to capture complementary informa-
under-resourced communities, have been historically overlooked tion from the scientific arena and real-world practice. Methods for
and underrepresented as target users of digital health technology each separate study phase are described below.
(DHT; i.e., technology that integrates “computing platforms, con-
nectivity, software, and sensors” [11, para 3] to support health
Phase I – scoping review
and wellbeing), creating a digital rift that threatens equal access
to health-beneficial innovations [12,13]. The intersectionality of The first study phase featured a scoping review of the literature
older age, disability and other markers of inequity that perpetuate to identify and characterize recent DHT under research and devel-
digital exclusion [13] worsens the risk persons with mild cognitive opment that supports activity participation in PwMCI/ADRD.
impairment (PwMCI)/ADRD will be left behind as mainstream Scoping reviews aid in mapping broad topics and synthesizing
technology developments continue to accelerate. evidence to identify gaps in the literature [20]. We adopted
A recent review by Engelsma et al. [14] showed that older Arksey and O’Malley’s [20] methodological framework that
PwADRD face unique challenges, in addition to the ones experi- involved identifying a research question and relevant studies,
enced by the general ageing population, when using mHealth selecting studies, charting the data and summarizing results. The
technology. These ranged from cognitive barriers (e.g., planning review is reported according to the Preferred Reporting Items for
abilities and organizing thoughts) and “frame of mind” obstacles Systematic Reviews and Meta-Analyses extension for Scoping
(e.g., concentration and concern for stigmatization), to physical Review (PRISMA-ScR) guidelines [21]. In characterizing the litera-
ability impediments (e.g., gait unsteadiness and tremor), percep- ture through use of the HAAT model, we asked the following
tion problems (e.g., double vision and object/facial recognition) research questions: (1) What is the surrounding context in which
and speech-language barriers (e.g., reading and verbal expres- the research has been conducted? (2) What are the characteristics
sion). Despite these findings, researchers have pointed to the rela- of the target users (i.e., humans) who are being studied? (3) What
tive paucity of inclusion of PwMCI/ADRD as the target users and/ is the nature of the activity participation being supported? (4)
or as key critics of technologies under study, with primary atten- What is the nature of the DHT (i.e., assistive technology) and
tion oftentimes paid to care partners as the principal beneficiaries related supportive strategies being studied? (5) What is the nature
and keepers of insightful perspectives [15,16]. Encouragingly, of researchers’ recommendations to advance the science of activ-
more inclusive practices in ADRD technology development appear ity participation-supportive DHT for PwMCI/ADRD?
to be an emerging trend in this line of inquiry [7,14,17]. We performed a literature search on 15 March 2020 of pub-
Calls for adopting person-centred methods to advance lished articles (January 2009–March 2020) indexed in PubMed. An
research and development of technologies for PwADRD have additional search was conducted on 4 June 2020 of indexed
been made [9,17] – examining the landscape of both research articles (January 2009–May 2020) in MEDLINE (ProQuest) and APA
and real-world practice in this domain through the lens of the PsycInfo (ProQuest) and again on 21 February 2022 (spanning
Human Activity Assistive Technology (HAAT) model [18] is one January 2020–February 2022) in the same databases. Primary
way to contribute to this effort. The HAAT model is a popular the- search terms described the target population (e.g., “dementia”;
oretical framework, grounded in occupational therapy and “cognitive impairment”) and DHT (e.g., “electronic activity mon-
rehabilitation engineering, that was designed to guide assess- itors”; “mobile health”). DHT was defined as technology used to
ment, prescription and evaluation of assistive technology systems support health, function and wellbeing through use of
suitable for people with disabilities [18]. The respective compo- “computing platforms, connectivity, software, and sensors”[11,
nents of the model are illustrated by a human (person) engaging para 3]. Some examples of DHT, without consideration for the
in an activity (occupation) within a context (social, cultural, envir- activity participation-supportive requirement, include devices like
onmental and institutional) enabled by assistive technology (tech- wearable fitness trackers or software applications like a stress
nology) [19]. It proffers a person-centred approach, with the management smartphone app. Given DHT involves connectivity
essential outcome being facilitation of participation in preferred and computing power, low-tech health technologies such as man-
activities to meet a client’s goals across relevant contexts [19]. ual body weight scales, reachers and handheld magnifiers are not
Placing the person as central to the model ensures technology included. Activity participation search terms were not used to
TECHNOLOGY FOR ACTIVITY PARTICIPATION IN DEMENTIA 3
gather the initial set of potentially eligible papers. Supplementary additional details as needed. Queried topics centred on needs of
Table 1 details the search strategy. the MCI/ADRD population; instructing PwMCI/ADRD in new tasks,
Studies were included if (1) they were available in English; (2) especially those involving technology; and application of technol-
they tested a DHT-based intervention designed to facilitate par- ogy with consideration of facilitators and barriers.
ticipation in meaningful activities or occupations a person needs A manifest (surface-level) content analysis [51,52] of tran-
or wants to do (i.e., engagement in physical, cognitive, and social scribed interviews – managed using spreadsheets – was con-
activities, including activities of daily living [ADL] and instrumental ducted to identify themes specific to technology use and related
ADL [IADL]); and (3) primary target users of the DHT were older supportive strategies and design for PwMCI/ADRD. Such analysis
adults with MCI/ADRD. Studies were excluded if target users were permits classification of qualitative information using a predeter-
the MCI/ADRD care partners; the technology’s purpose was for mined coding scheme. Initial categorical codes (e.g., technology
diagnosis, assessment, MCI/ADRD prevention or facilitation of pre- use in daily life, barriers to technology use and technology facili-
paratory tasks (e.g., cognitive skill building, fine motor control tation strategies) developed from the semi-structured interview
improvement); or the intervention focused on telehealth proc- guide were agreed upon at a team meeting and were subse-
esses. Eligibility was further limited to primary studies and the quently applied by two independent coders. As data were sorted
most recent or key study of an intervention by the same into the overarching categories, coders developed sub-codes as
research team. appropriate (e.g., accessibility barriers, technology design barriers).
Search results were organized using Covidence systematic Through regular discussions between coders, the researchers
review software (Veritas Health Innovation, Melbourne, Australia, modified their sub-codes as needed (e.g., adding a sub-code to
available at www.covidence.org). Citations from the literature coder one’s coding scheme that coder two had found relevant)
search were uploaded into Covidence and duplicates were and were later checked by a third analyst. Discrepancies were dis-
removed. Two reviewers independently screened all articles. At cussed by all three analysts until consensus was reached.
each stage, conflicts regarding eligibility were resolved in consult- Summaries of the overarching themes were created and specific
ation with a third reviewer; decisions were based on consensus. quotes were highlighted when they captured the essence of a
During the initial screening stage, selection criteria were particular theme. Finally, content was organized within relevant
applied to titles and abstracts. Review studies were excluded after HAAT model domains.
reference lists were hand searched for relevant citations. Two
independent reviewers conducted a full-text review of remaining Merging phase I and II
articles, extracting data to a spreadsheet with the following head-
ings: study purpose, study design, sample size, demographics, Strands of data from both study phases were merged using the
activity participation domain targeted, technology characteristics, spreadsheet created for extracting and synthesizing data for the
intervention implementation methods and key findings. Based on scoping review phase as the foundation. This decision was made
extraction results, additional articles were eliminated. Results were based on the in-depth level of granularity organizing data result-
synthesized in tabular format (see Tables 1 and 2) and summar- ant from characterization and analysis of the scoping review
ized narratively for further analysis, and finally organized under articles. Summarized data from the expert interviews were
HAAT model domains. mapped onto the scoping review table to facilitate cross-study
comparison. The team searched for and discussed similarities, dis-
crepancies and convergence. Where gaps were noted in available
Phase II – Expert stakeholder interviews data that could be cross-referenced, coders of the interview data
The second study phase featured interviews of MCI/ADRD expert revisited transcripts to seek, extract and map additional informa-
stakeholders, referred hereafter as experts. This phase was con- tion as necessary. Organization of the results under HAAT model
ducted with the purpose of gaining experts’ real-world viewpoints domains facilitated cross-phase synthesis.
on technology use among older PwMCI/ADRD, thereby producing
a complementary set of perspectives that could be compared Results
with the research landscape characterized from the scoping
review, and allowing convergence of findings from both the sci- Phase I – Scoping review
entific and practice arenas. The University of Southern California The screening and review process is depicted in the PRISMA flow-
Institutional Review Board approved all procedures. Using a pur- chart (Figure 1). The PRISMA-ScR checklist [21] was applied for
posive sampling strategy, we sought individuals from wide-rang- transparency (Supplementary Table 2). Database searches yielded
ing backgrounds and experiences relevant to MCI/ADRD. 2227 articles and hand searching systematic review references
Participants were identified using the research team’s professional added 67, leaving 1713 after deduplication. Title and abstract
network combined with an online search of publicly available aca- screenings resulted in 42 articles for full-text review. After data
demic, professional, clinical and community organization biogra- extraction, 28 studies were included in the final review. Figure 2
phies. Snowball referral supplemented these tactics. Enrolment provides a high-level summary of the scoping review phase
was limited to persons who were English-speaking, had �1 year results as situated within the HAAT model.
of experience in MCI/ADRD, and were actively working with the
target population in some capacity (e.g., providing therapy, con- Context of research
ducting research and volunteering). Table 1 contains basic characteristics of included studies, as
Interviews were conducted by trained research personnel via organized within the HAAT model, providing information about
telephone or video call, and took place between October 2019 the context of the research conducted and the humans (PwMCI/
and June 2021. Researchers followed a semi-structured interview ADRD) who were studied. All but one study from Japan [49] were
guide to ensure consistency [50], and interviews were approved conducted in Western countries/regions, with most from the UK
to last 1 h or less. Participants were asked open-ended questions (n¼ 6), Italy (n¼ 5), and the USA (n¼ 4). Most were small-scale
to allow free expression of viewpoints; probing questions elicited (median MCI/ADRD sample size ¼ 10) feasibility/pilot studies and
4
Table 1. Characteristics of included studies in the Scoping Review Study Phase, as situated in the HAAT Model.
Context Human
Study design/ Sample size Setting where tech Mean age or age range; race/ethnicity
Citation and country research methods (n) of MCI/ADRD Length of testing/exposure was studied n; female/male; education of MCI/ADRD Diagnosis and severity
Pilot randomized controlled trial 55 1–1.5-h training session þ 3 months Home Experimental: 72.7 yr; race/ethnicity NA; 12f/ MCI; mild dementia including AD,
NLD [28] in-home trial 16m; �2o edu 14, higher edu 11 frontotemporal dementia,
Control: 71.7 yr; race/ethnicity NA; 11f/20m; vascular dementia; very mild
�2o edu 12, higher edu 10 cognitive decline
Longitudinal, non-randomized, 7 3 months with weekly technical Adult living community 81 years; race/ethnicity NA; 5 f/2 m; edu NA MCI, AD, ADRD
USA [41] single-arm, repeated measures office hours available if needed with independent
(pre-post) living, managed care
and dementia care
Mixed-methods with participatory 9 3 workshops across 4 months Dementia NI group 60–81 yr; race/ethnicity NA; sex 3f/6m; Mild-to-moderate dementia
S. L. SCHEPENS NIEMIEC ET AL.
USA [31] Feasibility cohort study 22 3 months Home Veteran group: 65 yr; Black 10, white 4, Dementia – non-specified (impaired
Hispanic/Latino 1; 0f/14m; edu NA to significantly
Non-veteran group: 78 yr; Black 8, Hispanic/ impaired cognition)
Latino 0; 3f/5m; edu NA
ITA, ESP, AUT [43] Multicenter field trial 30 12 weeks Home Intervention: 72 yr (median); race/ethnicity Mild MCI due to AD or mild AD
NA; 9f/6m; edu NA
Control: 74 yr (median); race/ethnicity NA; 7f/
8m; edu NA
ITA [49] Non-concurrent multiple baseline 11 3 min x 3–6 baseline sessions; Centres for people 83 yr; race/ethnicity NA; 6f/5m; edu NA Moderate AD
3–5 min/intervention sessions, with ADRD
2–4 sessions/day, 51–107 sessions
based on participant availability
(continued)
Table 1. Continued.
Context Human
Study design/ Sample size Setting where tech Mean age or age range; race/ethnicity
Citation and country research methods (n) of MCI/ADRD Length of testing/exposure was studied n; female/male; education of MCI/ADRD Diagnosis and severity
ITA [33] Two studies: non-concurrent Study 1: 8 Study 1: 1.5–2-h sessions, including Centres for people Study 1: 84.8 yr; race/ethnicity NA; 3f/5m; Study 1: mild-to-moderate AD
multiple baseline Study 2: 9 1st baseline 2–4 sessions, 2nd with ADRD edu NA Study 2: moderate-to-severe AD
baseline 3–6 sessions, 3–4 Study 2: 79.6 yr; race/ethnicity NA; 5f/4m;
introductory sessions, and 37–82 edu NA
intervention sessions based on
participant availability
Study 2: 3 min � 3–7 sessions/day,
4–11 baseline sessions, 73–119
intervention sessions based on
participant availability
ITA [34] Non-concurrent multiple baseline 26 5-min sessions, 3–5 sessions/day, Residential social- Group 1: 83 yr; race/ethnicity NA; sex NA; edu Advanced AD
21–38 pairs of sessions medical centres NA
(control þ intervention) Group 2: 85 yr; race/ethnicity NA; sex NA;
edu NA
ITA [50] Adapted non-concurrent Group 1: 4 2–3 h sessions, including 3–5 Activity and Group 1: 71 yr; race/ethnicity NA; 3f/1m; edu Mild-to-moderate AD
multiple baseline Group 2: 4 baseline 1 sessions (no tech), 3–5 care centres NA
baseline 2 sessions (no tech), 3–4 Group 2: 75 yr; race/ethnicity NA; 4f/0m;
introductory sessions (tech), and edu NA
34–78 intervention sessions (tech)
DEU [51] Open-label, non-randomized, cross- 14 15 min training, 15 min task Hospital campus 71.9 yr; Mild-to-moderate AD
sectional, mono-centric pilot completion � 1 session race/ethnicity NA; 9f/5m; edu 6–10 yr
AUS [35] Qualitative study with observation, 3 6 months Dementia wing of long- 76–87; race/ethnicity NA; 1f/2m; edu NA Moderate-to-advanced dementia
focus groups, and interview term care facility including Lewy body disease, AD,
and dementia (non-specified)
USA [26] Pilot randomized controlled trial 48 6 months Home All: 74.9 yr Dementia, MCI, self-identified
Intervention: 74.2 yr; Non-Hispanic white 16, memory concern
Hispanic white 2, �2 races 1; 11f/9m; �2o
edu 4, higher edu 16
Control: 75.4 yr; Non-Hispanic white 20, Asian
1, �2 races 2; 14f/14m; �2o edu 7,
higher edu 20
Not specified [40] Non-concurrent multiple baseline 5 Mean 7-min sessions (10 min max), Day centre for persons 80 yr; Mild-to-moderate AD
1–2 sessions/day, 3–5 baseline with ADRD race/ethnicity NA; 5f/0m; edu NA
sessions (no tech), 5 intervention
practice sessions (tech), 20–50
intervention sessions (tech)
CAN [29] Phase 2: Qualitative observation 3 One 30-min session Long-term care facility 81–90 yr; race/ethnicity NA; 3f/0m; edu NA Moderate dementia
ESP, SWE [44] Feasibility-usability study Phase 1: 19 Phase 1: 1 introductory and user Phase 1: Clinical setting Blekinge site (BTH): 77 yr; race/ethnicity NA; MCI, mild dementia
Phase 2: 17 testing session Phase 2: Home 3f/6m; edu NA
(same subject pool for Phase 2: 4-week in-home test þ 1 in- Barcelona site (CST): 80 yr; race/ethnicity NA;
both phases) clinic user evaluation session 5f/5m; edu NA
UK [52] Qualitative study with interviews 15 12 weeks Home 61–94; race/ethnicity NA; 6f/9m; edu NA Mild-to-moderate dementia
SWE [37] Qualitative observation and interview 3 29 sessions among 3 participants Home “Older women” – no age specified; race/ Dementia (non-graded)
(varying lengths and total ethnicity NA; 3f/0m; edu NA
completed/participant): 8 without
support, 12 with CIRCA, 9
with CIRCUS
AUS [53] Pilot feasibility study 15 12 weeks total: Home 83 yr; race/ethnicity NA; 7f/8m; edu Mild-to-moderate dementia
Weeks 1–2: 40 min/week 11 yr (mean)
Weeks 3–4: 60 min/week
Weeks 5–6: 80 min/week
Weeks 7–8: 100 min/week
Weeks 9–12: 120 min/week
TECHNOLOGY FOR ACTIVITY PARTICIPATION IN DEMENTIA
(continued)
5
6 S. L. SCHEPENS NIEMIEC ET AL.
Spain; Exp: experiment; f: female; HAAT: Human Activity Assistive Technology; ITA: Italy; JPN: Japan; m: male; min: minute(s); MCI: mild cognitive impairment; NA: not available; NLD: Netherlands; NOR: Norway; PRT:
2o: secondary; AD: Alzheimer’s disease; ADL: activity of daily living; ADRD: Alzheimer’s disease and related dementias; AUS: Australia; AUT: Austria; CAN: Canada; edu: education; DEU: Germany; DNK: Denmark; ESP:
randomized controlled trial [22,30,41]. Intervention/trial periods
Diagnosis and severity
Early stage dementia (mild-to-
were as short as a single session to as long as 24 months.
moderate impairment)
Settings where technology implementation took place were pri-
marily where PwMCI/ADRD lived (n¼ 19) or at community venues
AD, varying severity
(e.g., day centres; n¼ 7); Purves et al. [43] was the only study
describing a rural context.
Home
rest/sleep or work/volunteerism.
over �2 weeks
JPN [25]
[52] Social participation Individual Specific Reminiscence in Tablet Limited limiting apps on home screen to Nondescript “information technology and Each participant had at least one partner
Dementia (InspireD) tablet app touchscreen only those necessary; bright colours; large reminiscence” training was provided by who was a relative (spouse, child, or
is a home-based, personalized interface buttons; icons with brief text. research staff. grandchild) who would engage in the app
reminiscence programme to with them.
facilitate reminiscence and
social interaction.
[37] Social participation Two web-based apps, CIRCA and Tablet Sequential presentation of information – Basic instructions on tablet use and use of CIRCA Dyad structure consisted of PwD paired with
CIRCUS, enabling access to touchscreen theme selection leads to media categories and CIRCUS were provided to the care-aid. No professional carer. The carer functioned as
curated multimedia (e.g., interface (photos, music, videos), followed by training was described for the PwD. a conversation partner, facilitated
pictures, videos, music), either further choices in each category. engagement with tech, and progressed
generic or personalized, conversation when necessary.
respectively, to facilitate CIRCA: the programme (not the users)
reminiscence and conversation. randomly selects pre-established topics to Research staff (presumably) set up tech (e.g.,
promote equality between PwD and uploading personalized pictures).
conversation partner and constrain choice
thereby dissuading repetition of same
conversations.
and assessment delivered via automated tailoring of exercises and and demonstrated”. Phone support and information entry (e.g., perceived exertion
intensity based on user-inputted self- scheduled and as-needed home visits were ratings), and safety monitoring.
(continued)
11
Table 2. Continued.
12
loaded with an activity and interface; appointments, and step count can be caregiver. Participants were shown how to use data reporting).
location monitoring app, a smartwatch individualized (e.g., add a picture dialling the apps. Instructions were repeated at a 1-
calendar app with appointment feature); data collection app ran in week follow-up visit. Tech support was Research staff (trained in psychology)
reminders, and a self-report background without needing user available via phone and at visits as needed. collaborated with participants to develop
app to provide personalized engagement to track activity and location An illustrated manual was provided. individualized goals, and provided tech
support of daily activities and data; Google Calendar was one app support as necessary.
objective monitoring of goal- selected for its simplicity and provided
based activity behaviours. to all.
[25] ADL, IADL, social Two videophone-based systems: Touchscreen PC PC remotely booted by conversation partner; No instruction for participants or caregivers Research staff (systems engineer) set up and
participation (1) remote reminiscence interface with auto-launch of software when PC turned was reported. maintained tech in partner’s and
conversation system to web camera on. participant’s home for study length.
promote conversational
engagement and psychological Remote Reminiscence Conversation Caregiver ensured tech stayed powered on
wellness and (2) schedule System: personal photos scanned onto PC for study length and observed and
prompter system to assist PwD and used by partner during conversation. reported on participant behaviours.
to perform household tasks.
Schedule Prompter System: audiovisuals (i.e., Remote Reminiscence Conversation
“beautiful pictures and soothing/ nostalgic System: research volunteer functioned as
music”) to draw users’ attention to PC; conversation partner and remotely
short 5-min videos to motivate (i.e., old activated tech; caregiver supplied photos
music videos, motor exercise video, photo (presumably);
videos of participant) followed by caregiver þ partner þ participant
scheduler video to cue household task collectively scheduled calls.
completion (e.g., take medication,
prep meal) Schedule Prompter System:
caregiver þ memory clinic
therapist þ participant selected and
scheduled tasks. Therapist or caregiver
was videoed explaining tasks.
Notes: AD: Alzheimer’s disease; ADL: activity/activities of daily living; ADRD: Alzheimer’s disease and related dementia; app: application; demo(s)¼demonstration(s); IADL: instrumental activity/activities of daily living;
MCI: mild cognitive impairment; PC: personal computer; PwMCI/ADRD: person(s) with dementia; QoL: quality of life; tech: technology.
TECHNOLOGY FOR ACTIVITY PARTICIPATION IN DEMENTIA 13
Figure 1. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flowchart of the screening and inclusion process of literature for the scoping
review phase.
involvement. The DHTs investigated shared three primary design Researcher recommendations to advance the science
features: prompting software, customisability and multimedia/mul- Commonalities emerged from an analysis of the recommendations
tisensory experiences. Prompting software was implemented to researchers had made to advance science in DHT for PwMCI/
address device inactivity [32], to provide redirection and support ADRD, which could be similarly organized within the HAAT model
user decision making [39], and to simplify device navigation [23]. constructs. All but one study [46] noted future research should
Customisability enabled individualized tailoring to enhance motiv- entail enhanced study design contexts. They recommended lon-
ation to engage, such as by offering menu options from which ger, larger-scale trials with more robust methodologies
users could select meaningful activities [26]. Multimedia and mul- [23,33,47,48], as well as closely studying integration of DHTs into
tisensory experiences, such as use of soundscapes [27], videos real-life contexts such as within routine rehabilitation processes
[29,43], and vibration alerts [41] were also used to maximize [31] or environments that pose higher safety risk [39]. Researchers
attention and engagement. also recommended more attention to care partners situated
within PwMCI/ADRD immediate context by finding ways to reduce
Soft technology: instructional strategies. Descriptions of soft tech- their support burden [27,40], studying their wellbeing and care
nology related to instructional strategy supports were frequently burden outcomes [31,45,47], and gathering their perspectives on
brief; four studies [33,43,45,49,] included non-descript summaries practicality of the DHTs in daily context [35].
or made no mention of them at all. Popular reported (or infer- Meeting human needs was also at the top of researchers’
able) strategies included hands-on practice [28], training a second minds. They acknowledged the progressive, variable nature of
person involved in technology implementation [44], demonstra- ADRD diagnoses poses a challenge to DHT development [45] and
tion [22] and prompting/cueing from research staff [39]. Four that future DHT should accommodate diagnosis subtypes, comor-
studies [22,26,44,48] featured a supplemental user manual. bidities and changing needs as cognition and function decline
[22,28,32,40]. They stated more time should be spent on personal-
Soft technology: technology partners. A partner to support target ization and tailoring DHT to match what PwMCI/ADRD truly desire
users with the DHT during the intervention was described in all from the technology and to ensure it fits within their daily lives.
but one study [29]. Research staff and care partners frequently Others also suggested measurement of additional person-centred
served together as technology partners, with level of involvement outcomes such as social engagement [48], comfort with the DHT
varying from minimal [32] to substantial [41]. Research staff most [41], physiological benefits [35], mood [42] and perceived draw-
commonly provided the DHT training and technical support [49]. backs of the technology [ 38]. In only a few studies, broadening
Care partners, too, played a role in troubleshooting [24], encour- the sample diversity on key levels – socioeconomic status, race/
agement to engage with the technology [25], and technology ethnicity, targeted geographical regions, international participa-
customization [41]. tion, stages of ADRD – was noted as important [26,27,41,43,44,].
14 S. L. SCHEPENS NIEMIEC ET AL.
Figure 2. Common components of research studies addressing activity participation-supportive digital health technology for PwMCI/ADRD, as situated in the HAAT
Model. AD: Alzheimer’s disease; HAAT: Human Activity Assistive Technology; IADL: instrumental activity(ies) of daily living; PwMCI/ADRD: person(s) with mild cognitive
impairment or Alzheimer’s disease and related dementias; tech: technology; yr: years.
Advancing science in the activity domain was not discussed by experience, roles held and settings represented by experts. All
many aside from two studies with intentions to expand the capa- experts held multiple roles in their practice, ranging from clini-
bilities of the DHT to address more variety of activities [28,35]. cians and researchers to advocates, technology consultants and
Regarding future research recommendations for the studied assistive personal caregivers. Their practice settings spanned the con-
technology, researchers supported continued involvement of PwMCI/ tinuum of care, varying from outpatient and hospitals to commu-
ADRD in ongoing DHT design and development processes nity centres and home health. Figure 4 provides a high-level
[22,28,34,41,42,], including those with more advanced stage ADRD [27]. summary of the expert stakeholder interview phase results as situ-
Desired upgrades to the DHTs’ designs and functionalities were specific ated within the HAAT model.
to each study, ranging from adjusting timing of prompts [39] and mak-
ing onboarding less cumbersome [41], to increasing button colour con- Activity participation supported with technology
trast [24] and supplementing audio-alone elements with audiovisual Experts discussed several ways older PwMCI/ADRD were presently
options [42]. Several researchers planned to explore ways to reduce reli- using or seeking assistance to utilize mainstream technology for
ance on soft technology supports from others, such as by refining activity participation. Most commonly was technology for social
accompanying training for target users and/or tech partners participation and leisure as recalled by one expert: “A lot of them
[22,24,28,31,39,40], introducing more system automation [27], and do Words With Friends. Or they also use it [smartphone] to just
developing a more context aware (“smarter”) system [22,24,28,31,39,40]. stay connected with family, especially right now [during COVID-
19]. They do a lot of [ … ] apps that you can connect with people
on, like WhatsApp or Facebook”. Experts noted increased use of
Phase II – Expert stakeholder interviews
wearables and virtual platforms and portals for health manage-
All experts (N¼ 17) had �4 years of experience working/practic- ment. “I have several clients who call me just to get on their
ing/volunteering with older PwMCI/ADRD; most had 12þ years Zoom yoga classes”. Technology-supported IADL mentioned were
(n¼ 7). Respondents were primarily female (n¼ 14) and from the managing finances on banking websites, general IADL manage-
USA (n¼ 16), representing Western (n¼ 8), Northeastern (n¼ 5), ment via digital alarms/reminders, and community mobility (e.g.,
Southeastern (n¼ 2) and Midwestern (n¼ 1) states. One partici- bus transit apps). Other activity categories such as sleep, basic
pant was from Ontario, Canada. Regarding sub-types of condi- ADL, work/volunteering and education were not discussed.
tions/diagnoses of the older adults with whom the experts
interacted, all reported working with persons diagnosed with MCI Influential factors and strategies for technology implementa-
and AD. The next most common sub-types experts reported see- tion/uptake
ing in their practice were vascular dementia, Parkinsonian demen- Experts described a number of factors and considerations that
tia and mixed dementia. Figure 3 depicts the breadth of should be made – relevant to the remaining domains of the
TECHNOLOGY FOR ACTIVITY PARTICIPATION IN DEMENTIA 15
Figure 3. MCI/ADRD-relevant practice settings represented and roles held by interviewed expert stakeholders. Several experts reported multiple roles across various
contexts in their professional and personal histories.
Figure 4. Expert stakeholder viewpoints of influential factors relevant to digital health technology, as situated in the HAAT Model. HAAT: Human Activity Assistive
Technology; IADL: instrumental activity(ies) of daily living; PwMCI/ADRD: person(s) with mild cognitive impairment or Alzheimer’s disease and related dementias;
tech: technology.
HAAT model – as well as supportive soft technology strategies don’t want to participate [in research] is because they say, ’Oh
that were deemed influential to technology implementation and well, I don’t have Internet,’” remarked an expert who conducts
uptake in PwMCI/ADRD. technology-based research in rural communities. Similarly, an
expert who serves older adults with lower socioeconomic statuses
Contextual factors. Experts highlighted several contextual factors highlighted cost as a barrier: “Not everyone has an unlimited data
dictating technology feasibility and uptake. They posited society’s plan, [ … ] a lot of health apps tend to use up [data]”. Availability
limited understanding of MCI/ADRD conditions has led to ineffect- of support systems as well as timely and preventive support,
ive or unusable products for PwMCI/ADRD. They also explained a including assisting novice users or those with higher levels of cog-
nexus of access, availability and affordability as highly influential. nitive impairment in technology navigation, was a broad need
Reliable and affordable internet access, especially for people from identified. “[I]n the early stages of cognitive decline [ … ] our cur-
rural regions, was a key issue. “The number one reason people
rent way of supporting someone is kind of watchful waiting. [ … ]
16 S. L. SCHEPENS NIEMIEC ET AL.
We just kind of wait for something to happen before we demonstration with visual aids. One expert draws on abilities indi-
really help”. viduals are likely to retain despite cognitive decline, by incorpo-
rating multimedia: “[ … ] using the skills that this person actually
Human factors. Users’ prior experience with technology, especially has—they are losing a lot of words—so whenever I communicate
before cognitive decline, was a frequently cited human determin- [ … ] I use rhythm and music and visual cues”. Others capitalized
ant of use. Users “pick it up” easier with previous familiarity. on group dynamics, engaging PwMCI/ADRD in dyadic or small
Some described inexperienced users’ anxieties: “The number one group learning sessions. Repetition, consistency, and routine also
fear people have is that they’re going to destroy it [device] [ … ] surfaced as key. One expert repeatedly introduces technology
they’re so afraid I’m going to push this and try it and it’s gonna “the same time every day [ … ,] routine is very important for this
go kapoof on you [ … ]”. Along this vein, diagnosis type and asso- population”. Another explained making new technology compre-
ciated cognitive capacity was emphasized: “It depends on the per- hensible to PwMCI/ADRD by linking it to individuals’ lived
son [ … and] type of dementia they have, [ … ] it is so dependent experiences.
on their abilities”. Experts described how memory issues could Additionally, experts touted intuitive instructional design (i.e.,
impede technology use, such as recalling the necessary proce- structuring content to eliminate the need to think about how to
dures to operate the technology/software (e.g., steps to delete an respond) as beneficial. Using plain language, step-by-step instruc-
email) or remembering to use the technology at all (e.g., donning tion, and simplified content was recommended, as true for one
a sleep-tracking smartwatch before bedtime each night). Other expert’s client who wanted to learn his iPhone’s calendar app:
human factors were said to play a role, including motivation and “We were able [ … ] to break down steps and write them for him
interest to use technology and having a clear understanding of to follow”. Even with those strategies, however, the expert said
the value technology would add to one’s life. If the technology the learning process was “overwhelming” for that client. Other
“helps that person do what they want to do, it’s meaningful, and strategies mentioned included scaffolding, errorless learning,
it has a positive outcome, that is going to motivate [ … ] chunking, guided discovery, monitoring frustration and limiting
the person”. instructional time.
Consideration of user motivation carried through to experts’
Soft technology: design factors. Experts criticized lack of accom-
instructional approaches. If a technology’s meaningfulness to
modations for PwMCI/ADRD’s unique needs when it came to cur-
activity participation was not immediately apparent, some would
rent technology design – mainstream not assistive technology
first educate users about what the tool offered – “letting people
was referenced and discussions centred on soft not hard design.
know [ … ] what is it and why is it important” – before advancing
“Older adults are fighting not just what they need to learn that’s
to device operation. Another stated, “I would get their attention
new, but they’re also fighting the challenges of learning it on
to see the value of it for them to do other things in their life”.
something that might not be well designed for them. [ … ] Things
One expert posited motivation and complicatedness of learning
as basic as just the size and the style of what is being communi-
technologies are inextricably linked: “If you have more motivation,
cated through a digital device can have a huge effect on their
you can deal with greater complexity. [ … ]People with dementia
frustration tolerance of learning something new”. One expert
are figuring out how to use Zoom because it’s a way of being
remarked the problem stems from failure to involve PwMCI/ADRD
connected socially”.
in technology development: “We are designing it for what we
imagine they want rather than what they actually might want”.
Soft technology: technology partners. Embedded in experts’ dis-
Experts’ recommendations to improve technology design cen-
cussions of soft technology instructional practices was engage-
tred on simplification. One expert highlighted Jitterbug, a smart-
phone for older adults, as ideal to ease clients’ transition to new ment of technology partners – typically care partners, family
mobile technology. “It’s a little more simplified [ … ,] very organ- members or experts themselves. They described technology
ised [ … and] designed for ease of use”. They cautioned, however, implementation in PwMCI/ADRD as a dyadic, collaborative process
to make technology “simple but not childish” and to balance sim- initiated immediately upon introduction of new technology. “You
plicity and interactivity: “That’s counterintuitive to a lot of design- just need to make sure there’s a person to do it [operate a
ers who want to make it [ … ] active and interesting, but we want device] with them. Everything you’re going to do is gonna be
it very simple”. Another expert suggested the technology’s con- together”. Some pointed to the serious challenge this poses for
tent should minimize the need for abstract thinking, a challenge PwMCI/ADRD who have limited social support (a contextual
for PwMCI/ADRD. Experts also emphasized technology should be consideration).
designed to serve a meaningful purpose, assisting people with Experts commonly involved care partners in didactic sessions,
valued activities. In reference to physical activity-supportive tech- offering firsthand exposure of the “dementia experience” with
nology, “We can’t just assume that we know exercise is important technology use. They identified "troubleshooter" as an important
for them”. They suggested customisable components to help role of the partner that helped minimize users’ cognitive load.
accommodate differences in users’ needs, functional level and The assistant must be “friendly” and able to “communicate in a
context. The iPhone’s facial recognition feature – to easily unlock way they [PwMCI/ADRD] understand”. Experts remarked technol-
the phone – was an example given of customisation fostering ogy partners supplement shortcomings in design features by pro-
ease-of-use. Like simplicity, a caveat was noted: “Customisation is viding real-time prompting and encouragement of device usage.
a tricky one. If it’s done well, it can be helpful and not well, it can When users have more advanced ADRD, care partners serve as
be so confusing”. surrogate deciders of what technology would be meaningful to
the user: “It’s going to probably be the family caregiver who sees
Soft technology: instructional strategies. Experts described several this need”. Finally, having someone available to monitor use over
soft technology instructional approaches they utilize to support time was deemed critical: “[ … ] there needs to be another care
learning and functional use of technology by PwMCI/ADRD. partner [ … ] who is going to ensure that this person remains safe
Popular didactic techniques included modelling and as their cognition continues to decline”.
TECHNOLOGY FOR ACTIVITY PARTICIPATION IN DEMENTIA 17
Youasaf and team’s review of research-based and commercial design/functionalities. Unfortunately, the latter level of support
health apps for PwMCI/ADRD had noted “leisure and socialization” has been linked to care partner burden [75] and older adults’ feel-
apps – the one common category to our DHTs discussed – ings of dependency [64], highlighting the imperativeness of bring-
although not as frequently available as apps for activity prepara- ing this research-based DHT into mainstream use.
tory purposes (i.e., cognitive training) or for care partners, have Consideration of sensory experiences was a focal point of tech-
begun to penetrate the commercial market [7]. nology design to facilitate activity participation. One expert
Technology to manage one’s IADL with autonomy was explained stimulating auditory senses using technology that deliv-
addressed in both study phases, but with different emphases. ers sound and music promotes learning and enjoyment, a similar
Experts reported persons with mild cognitive deficits were using position held by Dixon and Lazar [76]. Likewise, many research
mainstream technology to organize their routines (e.g., electronic teams in the scoping review recognized the importance of multi-
calendars) and to provide reminders to complete activities like modal interaction and sensory stimulation. Use of touchscreens
taking medication or attending appointments. Electronic calendars with haptic feedback, music to reward performance, and personal-
have shown to be useful in promoting ADL engagement in ized photos to stimulate conversation were just a few multisen-
healthy older adults and PwMCI/ADRD [68]. Digital assistive tech- sory features built into the DHTs’ designs and likely enhanced
nologies [69] compensating for cognitive impairments beyond motivation to engage. Along a similar vein, others have found use
prospective memory lapses relevant to IADL were not discussed of touchscreen tablets in an MCI/ADRD population promotes par-
by experts, but were regularly featured in the scoping review ticipation, social engagement and enjoyment [73]. Limiting sen-
studies. As noted above, research-based DHTs were available to sory distractors, such as icon clutter on home screens, was
help compensate for the more advanced cognitive barriers (e.g., another successful technique described in our study. Researchers
recognition, decision-making, thinking speed [14]) that can cause have recommended “intentional sensory stimulation”, whereby
obstacles to IADL completion. technology affords tailoring directly by the MCI/ADRD user for an
Activity participation domains addressed in neither study optimal sensory experience, as a key design component for future
phase included rest/sleep and working/volunteering. Because technology [76]. The aforementioned customisability of the
sleep disturbance is highly prevalent in the MCI/ADRD [70], there reviewed DHT suggests developers are moving in the
is ample opportunity and need for researchers and commercial right direction.
developers alike to produce innovations in DHT supportive of
quality sleep. Likewise, volunteerism proffers occasions for highly Instructional strategies
meaningful, productive and social activity engagement, while Although the above design recommendations/practices by experts
building resilience and slowing functional decline [71,72], but and technology developers overlapped substantially, soft technol-
PwMCI/ADRD are often excluded from such activities as they are ogy instructional strategies to support learning, motivation and
typically structured for high-functioning individuals [71,72]. DHTs functional use of technology appeared critical primarily to experts.
that could enable PwMCI/ADRD to more readily engage in volun- They spoke at length about successful instructional techniques,
teerism in promotion of quality of life is an avenue ripe for ranging from step-by-step guidance and demonstration with vis-
investigation. ual aids, to enfolding learning activities into routine, and capitaliz-
ing on intrinsic motivators to learn new technology. These
strategies have been recommended by others to support learning
Nature of the activity participation-supportive DHT and
in people with cognitive impairments [77–80] and are consistent
relevant strategies
with those summarized in a review of considerate mHealth design
A unique angle to our study was the focus on PwMCI/ADRD, for PwADRD [14]. The scoping review studies, on the other hand,
rather than care partners, as end users. Accordingly, we paid spe- provided little detail of instructional activities and supports, save
cial attention to characterizing the DHT (both hard and soft for one team [31,81], and yet acknowledged refinement of train-
technological components and strategies) implemented with ing and instruction as important for future research. This is a vital
these target users – information noted by others as relatively omission in the literature for DHT implementation in MCI/ADRD
absent in the literature [73]. Hard technology identified in either populations. Long-standing is research showing technology adop-
study phase was almost exclusively mainstream (i.e., tablets, tion in older adults is strongly influenced by the training and sup-
smartphones, smartwatches and Bluetooth), with only reference port they receive [82]. This warrants not only the development of
to protective cases as adaptive hard technology. The crux of DHT technology training protocols that accommodate new-generation
characterization comes in discussion of the soft technol- technologies and evolving user needs [83] as older people grow
ogy components. increasingly accustomed to integrating technology into everyday
life [84], but also greater transparency in what instructional strat-
Soft technology design egies and protocols involve.
Customisability to accommodate users’ unique needs, combined
with simplicity for ease of use was design characteristics encour- Technology partners
aged by experts and present in the reviewed DHT. Careful atten- Inclusion of technology partners was paramount in both study
tion to assistive features also crosscut the study phases. DHTs phases, aligning with research suggesting that having an available
within the scoping review studies frequently included auto- technology support network is key for uptake in older people
prompting – whether to encourage use, to direct attention, or to with memory complaints [85], particularly for those with more
assist in step-by-step task completion – to supplant the need for severe ADRD [17]. Experts described care partners (most often) or
human ADL support often shouldered by care partners [74]. themselves as assuming tech-support responsibilities, whereas
According to experts’ descriptions, tech-based prompting used by research staff aided by care partners frequently acquired those
PwMCI/ADRD was limited to reminder alarms to trigger activity duties in the scoping review studies. Experts characterized appro-
completion (e.g., taking medication); more advanced prompting priate technology partners as friendly, knowledgeable with device
was supplied by care partners to offset shortcomings in product use, available and communicative. Indeed, access to the just-right
TECHNOLOGY FOR ACTIVITY PARTICIPATION IN DEMENTIA 19
technology partner and tech support is critical, as older adults’ detailed accounts of soft technology instructional protocols
decisions to abandon technology is partly informed by dissatisfac- adopted to ensure success of DHT implementation are just a few
tion with available assistance [86]. As researchers bring products examples of where directed efforts can be made to continue
to market, they will also need to consider who can feasibly advancing the science and mainstream penetration of DHT sup-
replace research staff to fulfil tech-support roles. Shifting such portive of activity participation in PwMCI/ADRD.
responsibility to care partners could threaten long-term sustain-
ability given additional burden on care partners’ loads is a known
Disclosure statement
barrier to older care recipients’ technology use [87], and an area
researchers in the scoping review noted required further No potential conflict of interest was reported by the author(s).
investigation.
Beyond tech support, experts discussed the need for technol- Funding
ogy partners to monitor technology use over time, particularly in
terms of safety – an acknowledgement of ADRD’s progressive This work was supported by the National Institute on Ageing of
impact on function [88]. In contrast, this topic was addressed in the National Institutes of Health under award number R21
only one team’s work [31,81] in the scoping review studies. AG052838-02S1. The content is solely the responsibility of the
Researchers’ lack of attention to the progressive nature of ADRD authors and does not necessarily represent the official views of
may be a limitation of the short-term study designs or an over- the National Institutes of Health.
sight of designers to consider the effect such decline could have
on long-term use of DHT. Failure to consider this may have
harsher consequences for socio-demographically disadvantaged ORCID
groups. For instance, older adults with MCI and low education lev-
els are at risk for greater decline in everyday technology use and Stacey L. Schepens Niemiec http://orcid.org/0000-0002-
progression to dementia – patterns of use are not solely dictated 3766-7015
by diagnosis [89]. Those from minoritized sectors should be moni-
tored and more closely supported to avoid deprivation from
meaningful activities that can be enabled through technol-
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