INTRODUCTION: Aging Technologies for Indigenous Communities in Ontario (ATICON) explores the technology needs of Anishinaabe older adults in the Manitoulin region of Northern Ontario. Our program of research addresses inequitable access to supportive technologies that may allow Indigenous older adults to successfully age in place. METHODS: Using Indigenous research methodologies (IRM) and community-based participatory research (CBPR) we explored the acceptability of CareBand - a wearable location and activity monitoring device for people living with dementia using a LoRaWAN, a low-power wide-area network technology. We conducted key informant consultations and focus groups with Anishinaabe Elders, formal and informal caregivers, and health care providers (n = 29) in four geographically distinct regions. RESULTS: Overall, participants agreed that CareBand would improve caregivers' peace of mind. Our results suggest refinement of the technology is necessary to address the challenges of the rural geography and winter weather; to reconsider aesthetics; address privacy and access; and to consider the unique characteristics of Anishinaabe culture and reserve life. CONCLUSION: All three partners in this research, including the Indigenous communities, industry partner, and academic researchers, benefited from the use of CBPR and IRM. As CareBand is further developed, community input will be crucial for shaping a useful and valued device.
INTRODUCTION: Aging Technologies for Indigenous Communities in Ontario (ATICON) explores the technology needs of Anishinaabe older adults in the Manitoulin region of Northern Ontario. Our program of research addresses inequitable access to supportive technologies that may allow Indigenous older adults to successfully age in place. METHODS: Using Indigenous research methodologies (IRM) and community-based participatory research (CBPR) we explored the acceptability of CareBand - a wearable location and activity monitoring device for people living with dementia using a LoRaWAN, a low-power wide-area network technology. We conducted key informant consultations and focus groups with Anishinaabe Elders, formal and informal caregivers, and health care providers (n = 29) in four geographically distinct regions. RESULTS: Overall, participants agreed that CareBand would improve caregivers' peace of mind. Our results suggest refinement of the technology is necessary to address the challenges of the rural geography and winter weather; to reconsider aesthetics; address privacy and access; and to consider the unique characteristics of Anishinaabe culture and reserve life. CONCLUSION: All three partners in this research, including the Indigenous communities, industry partner, and academic researchers, benefited from the use of CBPR and IRM. As CareBand is further developed, community input will be crucial for shaping a useful and valued device.
The incidence of dementia continues to rise in Indigenous communities[1,2] and
Indigenous older adults have expressed interest in technological solutions
to support aging-in-place.[3] Thus far, there is no evidence in the literature of inclusion of
Indigenous persons with dementia (PWD) or caregivers during the early stages
of technology development.[4-8] Developers engaging
user or community input almost invariably include only urban settings and
urban residents, often only within large metropolitan areas, and no one has
reported targeting Indigenous persons with dementia.[3,5,9-11]
The development of aging-in-place technologies is further complicated by the
fact that many Indigenous people live in rural communities that often lack
health care resources, connectivity, and mHealth tools designed to diagnose
and treat cognitive impairment as people age.[10,12,13]To examine these issues further, it is important to note that there are various
health technology sub-specialities including eHealth (e.g. electronic health
records (EHR), patient portals into EHR), mHealth (e.g. ambulatory
monitoring devices, health-related cellphone apps, etc.), and, more
narrowly, surveillance technology systems. Surveillance tracking systems are
electronic systems capable of identifying the location and travel of a
person with dementia to ensure safety. Within mHealth technologies a handful
of products have been developed within Indigenous or American Indian
communities using community-based participatory research (CBPR)
methodologies including breastfeeding, medication adherence, alcohol
consumption during pregnancy, hypertension, and general healthy lifestyle
support.[14-20]
While these are notably important health priorities, none of these medical
conditions are related to dementia and aging-in-place. The general
exploration of mHealth or eHealth applications among adults supports the
feasibility and indicates a general interest in technologies, though
economic and connectivity limitations in rural and remote areas are always a
strong concern.[15,21-23] None of the products reviewed in a recent systematic
review of mHealth technologies who engaged Indigenous communities included
products specific to issues of aging.[24] Finally, with dementia-specific surveillance technology research, not
one of the surveillance technology products described in several systematic
reviews reported the inclusion of Indigenous or American Indian
communities.[25,26] Indirect evidence
from studies of perceived usefulness highlights the need to include
non-majority, Indigenous end users in technology development. For example,
high perceived usefulness of technology increases acceptance, and
“usefulness” is noted to be context specific (e.g. specific to caregiver or
person with dementia). In this work however, the ethnicity of participants
was rarely identified in any of the cited studies, nor was culture
considered as a driving force behind context.[26] Our research objective is the development of culturally safe and
culturally designed technology capable of tracking an Indigenous older adult
with declining cognitive health in rural and remote areas in such a way that
their mobility and independence is not impaired, connection to cell towers
or internet is not needed, and the information reported from the device is
useful to families to facilitate aging-in-place.To this end, CareBand Inc. sought to work with Aging Technologies for
Indigenous Communities in Ontario (ATICON) and Anishinaabe residents of the
Manitoulin region of Northern Ontario (Figure 1). With ATICON’s support,
CareBand representatives visited First Nations on Manitoulin to learn how to
work in a culturally appropriate way and to understand the rural and remote
environmental, social, infrastructure, and health care needs of the
Anishinaabe of the Manitoulin region. Working with Indigenous communities
around health research requires a different orientation to research and
careful attention to the methodological approach.[27] The concept of “ethical adoption” as it relates to technology
development for dementia requires the inclusion of targeted users in the
early stages of technology development. During this early technology
development stage producers and engineers benefit from hearing the reactions
end users have of prototypes and the thoughts and wishes for potentially new
features or uses, and this is especially important in dementia care
technologies.[28,29] Decades of
research ethics violations and distrust within Indigenous communities has
resulted in a shift to using CBPR and IRM approaches in which all research
partners, in this case academics, industry leaders, and Indigenous
communities, hold mutual respect and equitable involvement in all phases of
research development. Through a university – community – industry
partnership, a study was designed based on CBPR approaches, utilizing
Indigenous Research Methodologies.[3,30,31] The current
project highlights the partnership between academic researchers, Indigenous
communities, and industry representatives. The contributions and
characteristics of each of these 3 partners are described in turn. Note that
the organization of the three partners as “academic”, “Indigenous”, and
“industry” must be understood as a convenient way to introduce the partners,
but meaningful crossovers exist. For example, Indigenous researchers were
based (employed) in both the academic (MB) and Indigenous communities (KP).
Strong collaborative bonds, open and constant communications, and teamwork
are the norm for this partnership, which makes a brief description
difficult. Though artificial, the following description is organized by each
professional affiliation partner.
Figure 1.
Map of Manitoulin Island, Ontario, Canada.
Map of Manitoulin Island, Ontario, Canada.
Academic researchers
KJ and WW, both anthropologists, have worked closely with First Nations
communities on Manitoulin Island for over 20 years. Their work
addresses Indigenous dementia evaluation and care,[1,32-34] rural health equity and social
accountability,[35,36] diabetes among Indigenous
communities,[37-39] and the development of innovative CBPR
methodologies within Indigenous communities.[J Empir Res Hum Res Ethics. 2008 ">40-43] KJ leads ATICON and is an internationally
recognized expert in cultural understandings of Indigenous dementia.
WW has conducted research on several approaches including telemedicine
and online training formats for professionals in rural and remote
areas.[7,44] KJ and WW use a CPBR approach and work closely
with a community researcher (KP) and a senior research associate (MB)
to facilitate the research at the community level.
Indigenous communities
The Manitoulin region in Ontario, Canada, is home to seven First Nations
communities, three First Nations Health Authorities (FNHA), and an
Aboriginal Health Access Centre (AHAC). All research that involves
Indigenous people or Indigenous health data on Manitoulin Island must
be supported by the local leadership and undergo review by Manitoulin
Anishinaabek Research Review Committee (MARRC). The MAARC is a local
research ethics board (REB), that reviews proposals to ensure the
research benefits communities in a culturally safe and ethical manner.[45] KP lives on Manitoulin Island where she coordinates community
projects and conducts research in these communities in partnership
with KJ, WW, and MB.
Industry partner
CareBand, Inc. is a new research partner to the longstanding academic –
Indigenous community partnership described above. Their Chief
Executive Officer (CEO; AS) began developing a wristband technology
designed to enable people living with dementia to live safely in their
own home and community in the least restrictive way possible. There
are 4 active patents on the device (see below), and in 2017, CareBand
was named in the “Top 10 Healthcare Tech Startups to Watch” by
TechRepublic. CareBand ‘s CEO (AS) has also received accommodations in
2018 from the American Medical Directors Association. He began working
with the academic researchers (WW, KJ) in 2018. CareBand is a
wristband system (Figure 2) for monitoring the ambulation and position of
persons with dementia. The innovation and characteristics that make
CareBand well suited for rural and remote communities are found in the
unique combination of Bluetooth Low Energy (BLE), GPS, and Internet of
Things (IoT) wireless technology called LoRa to track indoor and
outdoor location. CareBand’s use of LoRa allows the device to reach
distances up to 5–10 miles with optimal power, location, and height of
antenna systems. The CareBand wristband communicates first through
location beacons placed within the home to the LoRa system of wireless
technology. LoRa technology greatest value comes from its versatility
to further enable CareBand to function in hard to reach regions
without requiring access to traditional forms of Internet access such
as cellular towers or WiFi network. It can be worn continuously for
three days before requiring a thirty-minute recharge, and also
features a locking clasp that requires two hands to remove. CareBand
has the capability of capturing and quantifying movement-related
behaviours (falls, wandering, agitation, etc.) that are informative to
caregivers and clinically relevant to geriatric and dementia
professionals. Caregivers can access this information through the
CareBand dashboard on their computer or mobile device.
Figure 2.
The CareBand device.
The CareBand device.
Methods
Community based participatory research (CBPR) approaches and
Indigenous research methodologies (IRM)
We utilize a CBPR approach ensuring the communities are actively involved
throughout the research process and are confident in claiming
ownership over the research outcomes.[40,46,47] This
approach includes working closely with a local community researcher
who is a trusted member of the community, a fluent Anishinaabemwin
speaker, and acts as a liaison between the academic and Indigenous
partners. KP, an Anishinaabe community researcher and Registered Nurse
from Wikwemikong Unceded Territory, has over 14 years research
experience, and 30 years of nursing experience on Manitoulin Island.
The research team also works closely with a Community Advisory Council
(CAC), composed of Anishinaabe language experts, caregivers, Elders,
and health care providers representative of the seven First Nations,
who are well known and respected throughout their communities. The CAC
is involved in every aspect of the research from conception through to
knowledge translation and exchange activities.The research is grounded in IRM in terms of privileging Indigenous
knowledge and ways of knowing, following Indigenous protocols, and
adhering to the 4Rs of research: respect, reciprocity, relevance,
responsibility.[48-51] Respect is demonstrated through meaningful
engagement and research partnerships that address power imbalances
that exist within western institutions. The research team acknowledges
the local history, culture, traditions, and factors that contribute to
social, mental, physical, and spiritual wellbeing.[52] The community researcher and CAC guide the research process to
ensure the project is relevant and inclusive of the communities they
serve. All research findings and publications are vetted through the
community researcher and CAC and shared back to the communities and
Indigenous partners through multiple formats that are accessible and
understandable. Another key component of IRM is the responsibility of
the research team to uphold the ethical obligations and expectations
outlined at the community level, in addition to those through
educational institutions or funding agencies. For our research, this
included outlining how the Seven Grandfather Teachings would be
respected throughout the entire research process.[53]
Community and ethical approvals
Prior to entering into a partnership with CareBand, exploratory
discussions were brought forward to the CAC. The CAC expressed
interest in the wearable technology and approved of the research team
pursuing a research relationship with CareBand. Additional approvals
were obtained from First Nations Health Directors, and ethical
approval was obtained from the Manitoulin Anishinaabek Research Review
Committee (MARRC Certificate #2018-15), and the Laurentian University
Research Ethics Board (File Number 6008342).
Data collection procedures
CAC meetings
Five CAC meetings took place between August 2018 and September 2019
for review of the CareBand and focus group planning. During the
first two meetings, the CAC brought forward questions around
aesthetic design, concerns regarding safety and privacy, as well
as geographical concerns and GPS functions of the CareBand. The
research team worked with CareBand via Google Docs to ask and
answer questions about the device. These questions and resulting
discussions were used to design the research protocol and
questions for the focus groups, which were reviewed and approved
in the third meeting. During the fourth meeting, CareBand CEO
(AS) and a previous Research Manager, met with the CAC on
Manitoulin Island. The meeting began with an opening ceremony
welcoming the research relationship and the sharing of
traditional teachings as to why the research needs to be
conducted in “a good way”.[54] CareBand answered additional questions relating to cost
of the device, monthly fees, and device transferability within
the family or community. The CAC also asked questions related to
required power source and charging of the device, as well as GPS
function, and the caregiver alerts for when the device is
removed or irregular movement is detected. Meeting minutes and
notes were recorded by the research team (MB, KJ, KP) and used
to develop focus group protocols, facilitated by KP. A fifth
meeting was conducted after the focus groups were completed to
share the research findings back with the CAC as a form of
member checking.
Focus groups
Focus groups were conducted in four geographically distinct areas
on Manitoulin Island, Ontario, in May and June 2019. Areas were
chosen in relation to population size and degree of geographic
remoteness. The community researcher and CAC worked with Health
Directors, Program Managers, Home Care workers, and Community
Health Representatives to recruit focus group participants from
six out of the seven First Nations. Targeted recruitment efforts
were aimed at Indigenous men and women aged 45 years and older
who are natural helpers (people who help Indigenous older adults
in their community, regardless of monetary compensation or
familial relationship) or caregivers to Indigenous older adults
and people with dementia, and Indigenous health care providers
aged 18 and older who work with Indigenous older adult
populations and people with dementia. Adults meeting these
criteria were first suggested by the CAC, health care directors,
or community health representatives from each region. Potential
participants who expressed interest in participating in a focus
group were contacted by the community researcher for additional
information.Focus group methodology requires unanimous verbal or written
consent in order to allow digital recording, any dissenting
participant results in prohibiting the recording of the session
in favor of hand-written notes. In this project, one group
denied the use of digital recording. Participants were
encouraged to share their thoughts, feelings, and ideas for use
of the CareBand in the language they were most comfortable with
(Anishinaabemwin or English). Videos introducing the CareBand
system were shown to each group and participants had the
opportunity to try on a sample CareBand. Participants were also
shown an initial smartphone interface. A total of 29 adults
participated in the focus groups. Participants were provided
with a meal, refreshments, and an honorarium in acknowledgment
of their sharing of knowledge and time. Focus groups were
facilitated by the community researcher, with assistance by a
research assistant and solicited feedback on the CareBand
prototype from Elders, formal and informal caregivers, and
health care providers. Questions focused on the look and feel of
the device, geographical usability in rural and remote
locations, affordability, security needs, and general comfort in
using technology, as well adaptations needed to address culture
and lifestyle. The topics were not restricted by time, and each
community was allowed to distribute their time on any one
question in any way they saw fit. The four focus group meetings
ranged from 33 to 67 minutes. Following each focus group, the
community researcher and research assistant debriefed and
recorded participant reactions, observations, and any issues
that arose during the focus groups in a narrative summary to
assist with the analysis.
Qualitative data analysis
Four senior researchers, with extensive qualitative research experience,
engaged in a thematic analysis of the focus group transcripts,
narrative summaries and meeting notes (WW, KJ, MB & KP). The focus
group transcripts were organized by question and compared across sites
through a data table in a word document by MB and KP. Hand coding of
the transcripts, as opposed to using a qualitative software program,
such as NVivo, was selected due to the small number of focus groups
conducted. The narrative summaries from the focus groups were reviewed
and any supplementary information included in the data table. The
senior authors (WW & KJ) further reviewed the data and identified
major themes. These themes were shared back with the CAC and reviewed
and approved as a form of member-checking.
Results
The key themes produced by the attending participants were related to the
following 6 areas: product aesthetics and comfort; needs associated with
rural or remote life; the cost and affordability of the CareBand; issues of
security, safety, and privacy; issues related to on-reserve infrastructure;
and cultural considerations. Each of these key themes will be discussed in
turn.
Product aesthetics and comfort
Several members in all four groups expressed a desire for more options in
device styles. The prototype model was called “big and clumsy looking”
and “rubbery.” Participants suggested the CareBand might “get caught
on something” and all groups asked if alternative styles could include
a broach, belt clip, small bracelet, or ankle bracelet. Several groups
also expressed concern over the perceived roughness of the fabric and
fear that it could irritate the skin of an older adult with thin,
fragile skin. The prototype had a patent pending locking clasp that
requires two hands to remove. This was liked by some, but others felt
that it would induce frustration when people with dementia (PWD) tried
to remove the CareBand.
Rural and remote life
A common theme across all groups were concerns related to the stability
of the Island’s electric grid and recharging the CareBand. Manitoulin
Island can experience frequent power outages during harsh weather,
particularly the winter. There was concern that thunderstorms and
lightning could affect the CareBand. Generators are used by some on
Manitoulin Island and concerns about the CareBand’s ability to
recharge using a generator were expressed. There was also concern by
some about people who are reportedly unable to wear watches due to
accelerated draining of the battery. Participants speculated that this
was related to a person’s individual energy field which in some cases
was believed to interfere with electronics. While the device does not
require WiFi access, participants also expressed concern that using a
cellphone interface as a method of monitoring the PWD might be
limiting. The CareBand itself does not require WiFi or cellular access
to record movement, but a caregiver uses a cellphone to review past
movement (e.g. movement within and outside of the home) and behaviors
(e.g. falls). Most liked the potential for electronic tracking of the
PWD outside the home, but participants questioned what would happen if
a wearer moved outside the range of LoRa signal: would the CareBand
shut off, what if the PWD visited on the mainland beyond signal range,
was the connectivity portable to allow visiting beyond signal range?
Tracking the battery life in an easy way (percent remaining) was also
a desired feature. Finally, the effects of extreme temperature
variation were questioned. For example, external LoRa hardware (radio
bridge sensors) must be installed on phone polls or other tall towers
similar to cellular technologies. Whether this hardware is capable of
withstanding extremes of weather and temperature (–30 °C/–22°F, with
wind chills gusting to –40 °C/–40°F) common in this region of Canada
remains to be seen.
Cost and affordability
The current estimated cost (∼$30 monthly fee) was a controversial issue.
While some felt that “that is basically a dollar a day, which is a lot
of peace of mind for a dollar a day”, others felt the cost was
prohibitive, a deterrent, and too much for those on a limited income.
Some expressed the hope that subsidies might be available from Indian
Affairs or other governmental programs for aging and dementia. The
option to rent was also desirable and it was pointed out that other
safety monitors are both available to rent and could be subsidized
through government programs. Some participants noted that other
systems for tracking movement in PWD exist and are subsidized by the
government. Features of those products (satellite connectivity, fall
detection, monthly fees and subsidies, caregiver safety alerts, etc.)
were compared to the promise of the CareBand but uncertainty on what
the final model will feature limited this discussion.
Security, safety, and privacy
This topic consumed the most time during the focus groups. The security
the device provided caregivers was appreciated by most, particularly
as the island affords many safety risks related to geography and the
remoteness of the island. Many hoped that the tracking feature alone
would enable aging-in-place. The ability to receive alerts and track a
loved one who wanders, particularly to protect against drowning, was
frequently mentioned as a positive feature. It was also noted,
however, that the current model did not appear to have a way for a PWD
or older adult to send their own signal that they might have fallen or
are confused, lost, or hurt. The timeline for alerts to caregivers was
also questioned. All four focus groups also expressed a desire to have
a built-in feature for fall detection. Security and privacy of the
data collected by the device was also a topic of concern for all four
groups. Participants both voiced their concerns regarding access to
the data generated and breaches of privacy, while supporting the
sharing of data with specific third parties (homecare services,
emergency and rescue services, police, etc.). Not surprisingly given
the mistrust of mainstream institutions and researchers, several
participants wanted to know how the CareBand Inc. intended to use the
data. Finally, the most remote site suggested that the CareBand could
be used to monitor the speed the PWD is travelling and send an alert
to the caregiver if the PWD is in a moving vehicle when they are not
supposed to be – either as a passenger or a driver.
On-reserve infrastructure
In this key theme, participants contrasted on-reserve homes and long-term
care facilities. Several participants noted that the homes on-reserve
were quite small, possibly so small that only one beacon would be
needed within the home. The CareBand was viewed as potentially very
helpful in long-term care facilities. Questions were asked about how
CareBand would work within a nursing home and what care staff might
learn about a resident from the device. The potential within a
facility to track visits to the bathroom as a potential signal of
urinary tract infections or assistance in resident monitoring during
staffing shortages was also seen as a benefit of the CareBand. Having
a device such as CareBand could allow programs to more securely bring
a PWD out of the community or neighborhood for outings without fear of
losing them. Or, in small and remote communities a lack of resources
may necessitate bringing a PWD along on trips to larger metropolitan
areas. This, in turn, may affect dementia behaviors such as wandering,
confusion, and risk of becoming lost. In this situation as well, the
availability of surveillance technology may be of particular
value.
Cultural considerations
Several participants indicated that the device and app should be
uncomplicated and friendly to use by an Anishinaabe older adult or
caregiver. The desire for the device messaging feature and related
materials to be in Anishinaabemwin was expressed. Some participants
feared that proud Anishinaabe older adults would be offended by the
idea that their movements would be tracked. As with the key theme of
security, safety, and privacy, participants thought the possibility
for sharing alerts with multiple friends, neighbors, informal
caregivers, or family members was desirable. Focus group participants
speculated that the CareBand would help give peace of mind to family
who work off-reserve or off-island. In cases where family members are
not available, other community members or natural helpers seamlessly
step in to assist PWD in a way that is consistent with traditional
Anishinaabe values. Given this, participants saw potential benefit in
giving multiple people permission to review surveillance technology
alerts. Range was discussed in relation to cultural activities and a
desire to ensure the PWD could continue to participate in land-based
activities – the possibility of a mobile tracking box for group
outings was well received. It was also noted it would be important
that the device could include a way to signal for help if the PWD fell
in the bush.
Results summary
This review of key themes and behavioral observations during the focus
group sessions indicates that the six Manitoulin Island Anishinaabek
communities saw both positives and negatives related to the use of
this technology. The industry partner was offered several ways in
which the aesthetics of the CareBand and its functionality could be
improved both in general (size, style, incorporation of additional
dementia-related symptoms, cost model) and specific to Indigenous
culture and rural life (environmental hardening of the hardware,
language in messaging, support land-based activities, wide support
network, subsidies by Indigenous and Northern Affairs, or Health
Canada). The increased incidence in dementia in Indigenous communities
over the past decade[1,2] has encouraged Indigenous communities to seek
out new approaches to manage and treat these conditions in culturally
appropriate ways. From the perspective of an industry partnership, the
opportunity to receive direct feedback from Indigenous community
members on a prototype and to hear their thoughts and wishes for
further product development represents the goal of high quality
co-designing of products for dementia care.[28,29]
Conclusions
Multiple models of aging-in-place technology are available that include
continuous monitoring (AKA surveillance technology) within the community[55] and cognitive stimulation or tracking of cognitive change;[56,57]
but the current study is the first to use CBPR to engage rural North
American Indigenous communities in the early stages of a dementia care
product development. While other countries have made a concerted effort to
engage Indigenous older adults, particularly in Australia,[23,57,58]
North America has lagged behind. Studies of assistive technology in
Indigenous communities have been conducted,[59,60] but these
technologies were low technology devices (canes, prosthetics, walkers, etc.)
and not dementia specific. In fact, recent systematic reviews of community
engagement in the development of dementia care technology[25,26]
show that the omission of ethnicity and rurality as variables, has been
common in this field. In the present study, intentionally engaging six rural
Indigenous communities in Canada led to firmware and hardware design issues
that might not have otherwise been evident among urban participants or
contexts. Most notable is the request by participants that a wide range of
people be included in the contact list for the PWD. This may contrast with
the typical urban, dominant culture focus group feedback where privacy and
identifying one designee as primary caregiver or power of attorney is more
common. So too is the recognition by these rural participants that certain
geographic features pose heightened risk may be less relevant in large urban
settings (e.g. bodies of water or forests as opposed to street traffic or
unfamiliar neighborhoods). Community partners provided the CareBand
representatives with multiple suggestions for product improvement and the
inclusion of features previously not considered. For example, the suggestion
to include detection of unusually high rate of movement (driving speeds) and
alerts if indicated by care needs (driving license revoked) could
significantly increase caregiver peace of mind and safety for the PWD. While
not needed by all users, future study of the feasibility and programming of
such a feature as an option is within the capabilities of this device.
CareBand and academic researchers learned about Indigenous understandings of
dementia and culturally-based care practices. Rural communities will also
benefit from a product capable of providing safety monitoring of their loved
ones that is free of the typical burdens related to limited internet and
cellular connectivity. The inclusion of Indigenous older adults who provide
formal or informal dementia care helps to ensure that the final product is
culturally safe, useful to the community, and valued by the community as an
important tool for aging-in-place. Future projects should address design
issues for caregiver feedback of behaviors tracked by the system.Despite the lack of inclusion of Indigenous communities early in product
development by technology producers and creators, Indigenous communities
have not sat idly by but have instead embraced mobile technology in unique
and creative ways.[3] As indicated earlier, there are several examples of quality research
programs using community-based, culturally safe approaches to technology
development,[18,61,62] though there
remains severe limitations in studies conducted within the area of dementia
care for Indigenous communities. Although generalizing from one Indigenous
community to another is fraught with problems, the current results show that
caregivers of persons with dementia and professionals are eager to
participate in technology development, they provide unique problems for
industry to solve, and using their local knowledge of dementia care within
the culture, they can provide potential solutions that will enhance eventual
marketability of wearable technology for dementia care. This research
partnership involved technology that had already been conceived and held the
potential to respond to an identified behavioural issue related to a
dementia diagnosis – namely wandering. The community partners approached the
project with caution but also with great interest as they understood the
potential benefits. The already established research relationship between
the academic partners and the community partners likely played some role in
the initial acceptance of the project. The application of the CBPR and IRM
to this technology development research were also crucial. As is the case
for any research involving Indigenous populations, it is imperative that
Indigenous knowledge and ways of knowing are prominent in the process. This
project confirmed what an earlier literature review found that partnership
approaches that are respectful of Indigenous methodologies hold the greatest
potential for success.[3] This project revealed some more specific elements of the process that
can help guide others seeking to work with Indigenous partners: chose a
research topic that addresses a community priority; engage with communities
early; seek formal community approvals before you begin any research
activities; hire and train local community researchers who understand the
culture and community context; work with a community advisory group or
advisors; govern, plan and implement the project jointly; and seek continual
feedback and approvals at each stage.[63]As with all studies, the current study has several limitations that need to be
acknowledged. In our focus group work with Manitoulin Island, we did not
have an active wear period. Although this was intentional to allow for
feedback prior to beta testing newer models on the island, it is clear that
actual wear of the CareBand would greatly enhance the range and quality of
feedback that caregivers and professionals are able to provide. In addition,
we limited this first study to one geographic region in Canada. Expanding
this work to other Canadian or North American communities would greatly
enhance the depth of knowledge gleaned from other rural Indigenous
communities and provide important tests of the generalizability of some of
these findings. Given these two observations, future directions for this
work would be to expand to other Great Lakes Anishinaabe communities or
beyond for further qualitative analysis, to provide an extended wear period
for firmware development, and to engage Indigenous caregivers, PWD, and
professionals in the design and development of dementia-related software in
a wearable technology format.
Authors: Kristen M Jacklin; Rita I Henderson; Michael E Green; Leah M Walker; Betty Calam; Lynden J Crowshoe Journal: CMAJ Date: 2017-01-23 Impact factor: 8.262
Authors: Sandra Suijkerbuijk; Henk Herman Nap; Lotte Cornelisse; Wijnand A IJsselsteijn; Yvonne A W de Kort; Mirella M N Minkman Journal: J Alzheimers Dis Date: 2019 Impact factor: 4.472