Codesign of a framework to support compassionate care appropriate to technology use by people with cognitive decline

Abstract

Purpose:

To further develop and begin to validate the Framework for Compassionate Use of Technology with Persons with Cognitive Decline and their Care Partners.

Methods:

We used an experience-based co-design approach. Phase 1 involved interviews with participants with cognitive decline and their care partners to increase our understanding of their perceptions of home monitoring technology use. Phase 2 involved Focus group meetings with participants with cognitive decline, their care partners, healthcare providers and technology researchers to seek feedback on the framework and develop tools to support a compassionate approach to the use of home monitoring technology.

Results:

Domains and categories identified during interviews were a) Ethical Principles including Addressing Privacy Concerns, Considering Dignity, Balancing Risks with Benefits, and Supporting Autonomy; and b) Usefulness and Preferences including Technology Utility, Need for Maintenance, and Preferences for Information Receipt. These findings along with focus group discussions aligned with and further elaborated the framework. Focus groups also informed the development of tools to support a compassionate approach to recommending and selecting home monitoring technology.

Conclusions:

The study provides initial support for the framework. More research is needed to test applicability and the usefulness in practice settings.

Introduction

The prevalence of mild cognitive impairment (MCI) and dementia is increasing as the population ages. Worldwide there are currently about 55.2 million people living with dementia costing more than $1.3 trillion USD in 2019 and these numbers are expected to increase ¹. Access to specialist care for people with MCI and suspected dementia can involve wait times of over a year with timeframes also expecting to increase ^{2, 3}. This delay allows for significant decline in functioning before diagnosis and subsequent provision of supports for aging in place considering the impact MCI can have on ability to complete complex activities, e.g., medication management ⁴, social participation ^{5, 6}, and caregiving ⁷.

Technological solutions are growing as a potential option to support care for people living with MCI and dementia. In particular, home monitoring technologies provide the opportunity to detect functional change in real time, thereby promoting provision of support before the person experiences risks to health and activity disengagement ⁸. For example, sensors have become the most proposed solution for helping older adults with cognitive impairment to live independently ⁹. Examples of common sensor-based in-home monitoring technology include motion sensors for activity recognition, sleep sensors, pillbox sensors for medical adherence, wristwatch sensors for physical activity tracking, and power sensors attached to electronic devices, such as cooking appliances for power consumption data ^{10, 11}. Several multi-sensor systems for monitoring have also been designed and are being tested ^12-14. For example, the Collaborative Aging Research Using Technology (CART) platform is a home monitoring technology system that uses sensors throughout the home to continuously track everyday activities, monitoring activity patterns and function over time. These sensors monitor physical activity, medication-taking behavior, sleep, and socialization activities ^{14, 15}.

Monitoring technology has shown potential in improving daily activities, social behaviors, mental wellbeing, safety, and mobility for people with cognitive impairment ⁹. For example, technology can be used to track activity and information for the purposes of sending alerts, improving sleep, and providing data for individualized intervention planning ⁹, Monitoring technology could thereby support activities such as medication adherence, community mobility, and social interactions. Evidence also suggests that monitoring technology can reduce the burden on caregivers by providing them with information concerning the activities of older adults with cognitive impairment ^{9, 16}. However, implementation of sensor-based in-home monitoring technology presents several challenges, including privacy considerations, technology acceptance, ease of use, stigma, data security, and cost ^{17, 18}.

While monitoring technologies can play a role in helping people with MCI age in place through early detection, challenges exist in meaningfully engaging older adults with MCI in technology use ¹⁹. People with MCI often experience difficulties with memory, attention, and executive functions, which can make it challenging for them to learn and use new technologies effectively ^{20, 21}. Lack of personalization and lack of social support have also been identified as key barriers to acceptance and adherence to technology for those with MCI ²². Other barriers include lack of familiarity with technology, complexity of technology, accessibility, flexibility of technology, privacy concerns, and cost ^{19, 22-24}.

To promote engagement and equitable access, approaches to selecting and recommending technology must be person-centered, including being sensitive to individual needs and cognitive abilities ^{19, 25}. While current approaches to selecting and recommending technology use may consider preferences of people living with cognitive decline, they have not sought to fully understand their experiences ^{8, 26}. Thus, a compassionate approach to care is needed – one that seeks to understand what matters to individuals, considers their feelings, and engages them in decision making ²⁷. Compassionate care is centered around kindness, authenticity, attentiveness, understanding, listening, and effective communication ²⁸. Technology has been found to facilitate and strengthen compassion and meaningful human connections in mental health care, thereby improving the delivery of compassionate care ²⁹.

For individuals with MCI, compassionate care related to the use of technology involves understanding what information patients want to receive and how they want to receive and use this information. It also involves acknowledging their concerns related to technology use and providing support throughout the process. Individuals receiving care have reported that how something is communicated is as important as what is communicated, and that care and compassion can strengthen partnerships between people with cognitive decline and caregivers ³⁰.

While models for compassionate care have been developed for the palliative care ^{31, 32} and neonatal setting ³³, we could not find one related to technology use with people with cognitive decline. Therefore, we proposed a framework for compassionate care related to technology use for support of daily activities based on a scoping review that summarized peer reviewed literature on approaches to technology design and selection that could inform a compassionate approach to recommending use of technology for daily functioning among adults with cognitive decline and their care partners ³⁴. The literature included articles representing the experiences of caregivers and individuals with cognitive decline in using technology, ethics and human rights approaches to technology use with individuals with cognitive decline, and technology design approaches for individuals with cognitive decline. Themes from this literature informed the development of the Framework for Compassionate Use of Technology with Persons with Cognitive Decline and their Care Partners ³⁴ (see Figure 1). The framework places the family at the center of service delivery promoting family centered care and a relational approach that is informed by support for autonomy, and consideration of other ethical issues (privacy, dignity and balancing risks versus benefits) and technology purpose. These principles are integral to the action components of tailoring design to abilities, tailoring selection and application, and providing training and support ³⁴. The purpose of this study was to begin to validate and further develop the framework through seeking input from potential users, healthcare providers, and technology researchers.

Figure 1. Framework for compassionate use of technology with persons with cognitive decline and their care partners ³⁴.

Materials and Methods

We used an experience-based co-design approach ³⁵ that involved input from people with cognitive decline, care partners, healthcare providers and technology researchers. First, we used a descriptive qualitative approach ³⁶ to increase our understanding of the perceptions and experiences of home monitoring technology use among individuals with cognitive decline and their care partners to examine alignment with and revise the framework (Phase 1). Then we used a series of focus group meetings to seek specific feedback on the framework integrating findings from Phase 1 and to develop tools to support compassionate use of technology from individuals with cognitive decline, their care partners, healthcare providers and technology researchers (Phase 2).

Recruitment

For Phase 1, we sought to recruit 20-30 participants through two ongoing studies of the CART home monitoring technology system (described earlier), one in Canada and one in the United States, and from a memory clinic in eastern Canada. Participants were included in the study if they were either diagnosed with mild cognitive impairment or scored lower than expected on cognitive tests during data collection for the ongoing studies. Initially only participants who were using the CART technology were sought. However, due to COVID-19 related delays in recruitment at the Canadian site, recruitment was expanded to include individuals with mild cognitive impairment and their caregivers who were not using home monitoring technology.

For participants in the CART studies, CART study personnel screened individuals and sought their permission to be contacted for the study. Participants who were not using home monitoring technologies were recruited from a memory clinic using an established recruitment protocol to identify individuals who are interested in participating in research.

For Phase 2 of the study, we used a co-design approach with a series of two focus groups that were designed to engage participants in revising the framework and developing tools for healthcare providers and for individuals with cognitive decline and their care partners to support compassionate care related to technology use. The participants who took part in phase 1 of the study were invited to participate in the focus groups. We also invited healthcare providers and technology researchers connected to the memory clinic and the related research institute. Our aim was to recruit 6-8 participants with cognitive decline or care partners, two healthcare providers and one to two technology researchers.

Data Collection

Phase 1

Demographic and health information were gathered to describe participant characteristics that may influence technology use. The Oregon Roybal Center for Aging and Technology (ORCATECH) Technology Use survey was used to gather data on types of technology used to access the internet and duration of use of these technologies ³⁷. The Older Adult Resources and Services (OARS) ADL/IADL questionnaires was used to measure assistance needs for activities of daily living (ADL) and instrumented activity of daily living (IADL) ³⁸. The OARS ADL/IADL measures eight items related to ADL and seven items related to IADL on a 3-point scale with one indicating complete independence and three indicating completely dependence ³⁸.

In alignment with a descriptive qualitative approach ³⁶, semi-structured interviews were carried out to explore the experiences of participants with cognitive decline and their care partners, their beliefs and feelings related to using home monitoring technologies. Participants were first asked about current daily life challenges they were experiencing and then about the real or potential usefulness of four different home monitoring technologies. They were asked to elaborate on feelings they had related to using the technology, the benefits of using the technology, and concerns they had with the technology. Finally, they were asked about their preferences for receiving information collected by technology. Interviews were audio recorded and transcribed for analysis.

Phase 2

Input was sought through two focus groups to refine the framework and develop related tools to facilitate a compassionate approach to recommending technology use. At the first focus group, the framework was presented highlighting areas of alignment and gaps from the interview analysis. Feedback on each aspect was sought along with overall impressions of the framework. Attention was paid to strengths and areas for improvement of the framework as well as ideas that would help support a compassionate approach to recommending and supporting the use of home monitoring technology. Key ideas were documented during the meeting and transcripts of audio recordings of the focus groups were reviewed to ensure all relevant ideas were captured. A summary was sent to participants through email for feedback and discussion at the next focus group.

At the beginning of the second focus group, participants were asked for feedback on the summary that was sent out to further refine the framework. Then the focus turned to developing tools identified as being useful during the first focus group: a) guidelines for healthcare providers to promote compassionate care when recommending technology and b) a set of questions individuals seeking the technology could ask. Again, key ideas and suggestions were documented, and the meeting transcript later reviewed to ensure completeness of information. Documents were circulated by e-mail for final review and feedback that was integrated into the final documents.

Data Analysis

Demographic data are presented descriptively.

Phase 1

Analysis followed common processes used in descriptive qualitative research ³⁶. First, an initial coding framework was developed. To do this, two transcripts were analyzed independently by two coders (DK, SI) who then met to compare and discuss codes and begin to establish categories and sub-categories based on similarity of ideas. The remaining transcripts were then coded by one coder with periodic checks by the second coder to finalize the coding framework and refine categories and sub-categories. Finally, to ensure consistency, eight interviews were randomly selected and cross-checked by a third coder (MF). Any disagreements or discrepancies were resolved though discussion among the coders. NVivo software ³⁹ was used to organize and facilitate the data analysis process. Following the coding check, final categories and subcategories were established through discussion between the two primary coders.

Phase 2

Key ideas were gathered and used to refine documents which were circulated for feedback as described above.

Ethics approval was obtained through the Queen's University Health Sciences & Affiliated Teaching Hospitals Research Ethics Board (HSREB), ID # REH-799-21 and the Bruyere Research Ethics Board ID # M16-21-026. The protocol followed approved procedures, and all participants provided informed verbal consent, as approved by the Research Ethics Boards, to take part in the research and to publish quotations.

Data may be made available upon request to the primary author.

Results

Phase 1- Interviews

Twenty-six people with identified or potential cognitive decline participated in interviews. Nine interviews were conducted with participants who had the CART home monitoring technology installed in their homes while 17 were with participants who did not have the technology installed. Eleven of these participants were interviewed with their care partner. Demographic characteristics are presented in Table 1. The majority of participants lived with a spouse or partner, were retired, had a college or university education, and identified as Caucasian.

Table 1. Participant demographic information.

Characteristic	Participant-tech user (n=9)	Participant – non-tech user (n=17)	Care Partner (n=9; missing n=2)
Age (Mean years)	74.4	72.3	72.6
Gender
Man	4	12	4
Woman	5	5	5
Other	0	0	0
Race
Caucasian	8	17	7
Other	1	0	2
Living Situation
Live alone	6	0	0
Live with spouse/ partner	2	14	8
Live with other family members	1	3	1
Occupational Status
Retired	7	14	5
Working full or part-time	0	2	3
Other (e.g., on disability)	2	1	1
Education
High school	3	2	2
College/ University	6	15	7
Household Income
Less than $27.000US	6	0	0
$27.000-$60.000US	3	4	3
$60.000-$80.000US	0	4	1
More than $80.000US	0	8	4
Prefer not to answer	0	1	1
# of Health Conditions
Median (range)	1 (0-6)	1 (0-4)	0 (0-3)
Oars ADL (mean, range)	9.2 (8-11)	8.9 (8-13)	-
Oars IADL	8.3 (7-12)	9.1 (7-19)	-

ORCATECH survey results indicated that participant experience with technology use varied. The most common number of computer devices (desktop, laptop, tablet, smart phone) owned was three with a range of zero to four. Two participants did not own any kind of device and three did not own a cell phone. Twenty-four had bought at least one of their devices over 3 years prior. However, those that had bought a device more recently may have had one previously.

Data analysis resulted in two overarching categories that described participants’ perceptions and experiences of home monitoring technology use: a) Ethical Principles, and b) Usefulness and Preferences. These categories with sub-categories are presented below. Pseudonyms are used to protect participants’ confidentiality. Technology user participants are indicated by TU after their pseudonyms and non-technology users are indicated by NU.

Ethical Principles

Four sub-categories were identified in the overarching category of ethical principles. These included Addressing Privacy Concerns, Considering Dignity, Balancing Risks with Benefits, and Maintaining Autonomy.

Addressing Privacy Concerns.

Concerns regarding privacy varied among participants. While some participants expressed concerns about the intrusive nature of the technology, others did not perceive such issues. For example, Lilly stated: “They {sensors} didn’t bother me at all, didn’t bother me at all when I had sensors up”, whereas Wolf stated: “It feels like there’s an extra eye in the bedroom”.

A lack of understanding about how the collected data was being utilized and by whom was reported. For example, Tina (TU) noted, “I think some people think that they’re picking up videos and sounds and that kind of stuff, but I don’t think they do”. Concerns were raised related to being judged by those reviewing the information for not meeting expectations. For example, Ken (NU) was apprehensive toward granting medical professionals access to their data, noting, “One would be that you're not living up to the expectations of your medical practitioner, who says you should be getting 30 minutes of walking activity a day and you're only able to do 10 or 12”. Similarly, when asked about their comfort level of having a sensor on their computer, Quinn (NU) responded, “{If I’m going to} take a long time reading a story or something like that, this signal would report on my activity … I don’t want to be judged how long I’m reading comics or whatever.” Participants reported that educational interventions, such as learning sessions, could address concerns about privacy and use of information.

Considering Dignity.

Dignity considerations were highlighted by some participants, with Jerard (NU) suggesting a preference of “the less of that {the technology} that's around the better” because “you do start or could start being concerned about the fact that you’re really sicker than you are”. While Henry (NU) acknowledged the helpfulness of monitoring, he raised the possibility that individuals with cognitive decline might “resent” their presence, emphasizing the balance between assistance and potential negative perceptions.

Balancing Risks with Benefits.

Risks identified by participants were primarily related to privacy, with noting of the need to balance the risks with potential benefits. Potential implications if insurance companies gained access to data was highlighted as a concern. For example, Quinn (NU) stated, “Yeah, I can see if the pill box told them that you didn't take your pills every day, would that affect your health insurance and things like that? I could see people worrying about that. Or if you're getting up in the middle of the night, and they know you're wandering, would your health insurance use that against you”. Liam (NU) noted, “Well, I know people worry about privacy issues. … If … all of a sudden, … your insurance company says, ‘Well, we're not going to cover you anymore for this and that.’ So that's an example of maybe where I would be very reluctant to embrace technology.”

Doris (NU) highlighted the need to balance the privacy risks and potential benefits, “I can see a concern about a potential invasion of privacy. I mean if I were wearing a tracker … would I be concerned about my family knowing exactly where I was, well no. But I can see that some people might have that concern, … it does compromise your privacy. … so you have to weigh the trade-off. …. If I were in a similar situation, I would be willing to give up some sense of privacy in order to ensure that I wasn’t putting myself at risk”.

Benefits of home monitoring technology for caregivers were elaborated by Claudia (NU) who noted, “It’s much easier for the caregiver to get an idea of what’s going on if they have these monitoring systems. So they don’t have to keep running in and checking or something like that, they can monitor from afar and have confidence”.

Maintaining Autonomy.

Maintaining autonomy including individual choice and living according to one’s values were noted as important. Technology user participants described how they made decisions related to participating in the study and having the monitoring technology installed in their homes on their own. For example, Lilly (TU) stated, “I probably discussed it {having technology installed} with my children. … But they know that I am so independent that I make up my own mind. And I just told them about it I didn’t ask them about it”. When asked how they felt about potentially using the technology, Rosa (NU) responded, “It would annoy me, I think, from the feelings that you get of losing your independence in life... how much do you give up of your independence and being who you are?”.

Usefulness and Preferences

Usefulness and preferences were identified as the second category, with sub-categories of Technology Utility, Need for Maintenance, and Preferences for Information Receipt describing how participants viewed how technology could be used.

Technology Utility.

Perceptions of the utility of home monitoring technology varied with some participants seeing a potential use and others needing more information to determine usefulness. Some participants noted the potential utility of monitoring technology in their homes for enhancing health behaviors such as monitoring steps to increase activity, using a scale for weight management, and employing bed sensors for sleep tracking. For example, Eric (NU) noted that bed sensors could be “very valuable from the point of view of health in terms of the type of sleep that you get”. Related to usefulness of the scale, Quinn (NU) stated, “Well, if you were concerned about your weight loss or gain, it creates a history of your weight over X amount of time. You could track how much you weigh and how healthy you are, I guess”.

Participants also indicated that some of the technology could be useful for increasing safety. For example, Rosa (TU) indicated that she would “be totally comfortable {using the pillbox} and would make me feel safe”. Paul (NU) described how safety could be increased in the technology could detect falls, “…{monitoring} changes in gait and movement, etc., they could even help assist in falls, etc., that kind of detect if there is anything related to that”. Further, Holly (TU) noted that an alarm system to prevent wandering would be particularly useful. Related to increased safety, Henry (NU) stated, “if it would give you the chance to stay at home and live at home longer, then you would use it.”

While some participants found different types of technology to be useful, others did not. For instance, when asked how a door sensor may be useful, Oscar (NU) replied, “For me, it wouldn't be useful at all. Not at this stage anyway. I'm not sure how it might be of use. … I really want somebody to tell me why they would want that kind of information before I would say yes or no”. Other participants were getting similar information in other ways as noted by Irwin (NU) who said “I’m on a sleep apnea machine now, so I do get results from that. My sleep patterns and stuff. So, … I don't think I would need anything more than that to help me.”

Several participants identified the need to consider usefulness in relation to cost. Some participants noted they would not be willing to pay for this type of technology, while others indicated that they may pay the cost if it were reasonable. For example, Ron (TU) noted that they would pay if the cost were “$5 per month” whereas. Doris (NU) would pay “$40 per month.”

Need for Maintenance of Technology.

In evaluating the monitoring technology itself, participants reported various issues with maintenance (primarily due to Covid-19 restrictions) that impacted reliability and functionality. For example, technology user participants noted sensors falling off walls and the need for battery replacement. Holly (TU) noted, “I have no concerns other than them {sensors} falling off the ceiling and the wall. I don’t have any concerns other than they’re not getting the information because the sensors aren’t working”. Three participants noted that the cap of the provided pillbox often fell off, requiring a replacement.

Preferences for Information Receipt.

Participants expressed an interest in receiving information but did not have strong preferences about the mode of delivery. Email, text, or printout options were generally preferred. When asked about his preferred method of receiving information, Henry (NU) responded, “I mean you can say text or whatever. I don't know, email. I guess text”. Doris (NU) highlighted the importance of her children having access to the information, noting, “Well, if I’m forgetting, like I think probably the best way would be for it to go to our children because they’re the ones that – if we’re not fully able to look after ourselves, the information would be better going to them so that they were able to – so by email, I guess”. Rosa’s care partner (NU) noted the importance of timing in receiving information relating to the pillbox to support medication compliance. He stated, “I guess, either a text message or an email saying that, by a scheduled time, that pill box hasn't been open. So that she hasn't taken her pill.”

Phase 2 - Focus Groups

Focus Group consisted of 10 participants - seven people with MCI, one care partner, and two technology researchers. The second Focus Group included nine participants, five participants with MCI, one care partner, one physician and two technology researchers. Key ideas that were identified in the focus groups are presented in table 2.

Table 2. Key ideas from Focus Groups 1 and 2.

Focus Group 1 – Framework Feedback	Focus Group 2 – Tool Development
When selecting technology, compassionate healthcare providers should think about what would be most helpful to the person and their care partner(s). Consider: Individual and care partner abilities, needs, and preferences. Ability of technology to be adapted to match longer term needs and abilities. Is the technology user-friendly? Whether technology requires connection to internet. Is a log-in required? Who has access to information? What support/training is needed by the person and their caregivers to use the technology? Provide initial and ongoing training. Initial training may need to be longer and repeated. Training materials should be easy to read and understand. What support is available to use the technology? Are training supports available? What is the need for technology maintenance? Technology is not the answer to everything – people need creative and social things to do as well.	Ideas to inform guidelines for Healthcare Providers (HCP): HCP’s need knowledge of different technologies. Knowledge of technology should be implemented in education of HCPs. Knowledge needs to be constantly updated. Consider individuality of person in need. Is the individual willing to work with technology? Identify and understand the gap/shortcomings which needs to be filled through technology. Leave the freedom for decision-making to the person in need and the care partner. “Don’t make the subject feel stupid.” Consider the dyad (person and care partner). Roles and potential for conflict. Ease of use for both. Privacy is important. Check the person’s level of tolerance with regards to privacy. Who has access to the data (e.g., spouse, children, insurance company)? What kind of data is collected? How adaptable is the technology to both technical and individual changes.
People with cognitive decline and their care partners need someone who is knowledgeable about what technology is available or a resource for this. Healthcare providers may not be able to provide the details of how something works.	Ideas to inform questions for technology users to ask Product labeling should indicate the purpose, requirements, updates, limits of the technology Keep supporting outdated versions Clearly indicate product and associated ongoing costs Provide support for troubleshooting
Patients and caregivers are more concerned with the function and ease of use of technology versus ethics. But healthcare providers and technical support need to consider ethics.	-
Technology use: technology that is considered the “norm” is more likely to be adopted.	-
Compassionate technology developers should keep it simple and intuitive and include users with cognitive decline and care partners in the design process. Make technology conform to users not the other way around.	-

At the end the first focus group, participants agreed upon two tools that could be useful for promoting a compassionate approach to care when recommending home monitoring technology to individuals with cognitive decline: a guide for healthcare providers ⁴⁰ and questions individuals with cognitive decline or their care partners could ask ⁴¹. These tools were drafted using data from Focus Group 1 and presented at Focus Group 2 for discussion and feedback. Data from both focus groups validated the key concepts and structure of the framework and provided details to further elaborate these concepts as described in the Discussion.

Discussion

The objective of this study was to begin to validate and further develop the Framework for Compassionate Use of Technology with Persons with Cognitive Decline and their Care Partners ³⁴ using input from people living with cognitive decline, their informal care partners, healthcare providers and technology researchers in a process of co-design. The framework was developed to provide guidance towards supporting a compassionate approach to use of technology that supports functioning in daily activities with adults with cognitive decline and their care partners ³⁴. While there are frameworks available that can be used to inform a compassionate approach to technology use ^31-33, they do not address concerns that are more unique to individuals with cognitive decline such as how to support continued participation in daily activities and the capacity of the person with cognitive decline to make decisions. Findings from Phase 1 interviews and Phase 2 focus groups aligned closely with key ideas and concepts in the proposed framework and further expanded some concepts.

The framework places both the person with cognitive decline and their care partner(s) at the center of interactions promoting family centered care ³⁴. Family-centered care involves patient and family education, collaboration with family members, consideration of the family context⁴². While the idea of considering both the person with cognitive decline and their care partner’s needs, values and preferences was not identified during interviews, it was strongly endorsed during focus group discussions. Family centered care has mostly been researched in pediatrics with fewer studies in adult healthcare settings⁴². Applying family-centered care models to adult populations requires consideration of issues of privacy and cognitive capacity ⁴². Nonetheless, family centered models of care can be used to guide HCPs in working collaboratively with individuals with cognitive decline together with their care partners.

Ethical considerations described in the framework were further elaborated by interview participants. Namely the need to address privacy concerns, consider dignity, balance risks with benefits, and support autonomy were similar to ideas presented in the original framework. Privacy related to technology use was noted as an important topic for discussion to support compassionate care. Privacy concerns arising from review of the literature highlighted potential issues related to data use, storage, and access, and the potential to reveal private interactions and care needs to others ³⁴. These concerns vary depending on the individual but require a relationship of trust with providers to address. In the current study, interview participants expressed varying degrees of knowledge about and comfort with the use of monitoring technology. They identified a new privacy concern related to being judged by those reviewing their information if they were not meeting expectations. This concern also aligns closely with respect for dignity (as discussed below).

The framework underscores the potential of technology use to lead people with cognitive decline to experience stigma related to both the obtrusiveness of the technology being used and that the technology may draw attention to cognitive decline³⁴. In the current study, this idea was extended to the person with cognitive decline where the technology might make them notice their declining abilities more. The idea that less obtrusive and more mainstream technology may create less stigma and thereby support dignity was reiterated by participants in the current study. Participants also discussed the need to balance the degree of stigma experienced with the potential of the technology to support dignity through maintaining independence.

The primary risk identified by participants in the current study was the potential to compromise insurance coverage for health. This concern was raised primarily by participants who did not have public funding for healthcare. The initial framework development also identified potential risks such as loss of privacy, loss of social interaction, and the extension of medical care into daily life ³⁴. Notably, both studies supported the need to balance potential risks with benefits.

Autonomy was highlighted in the framework as an important consideration that requires specific attention in the context of declining cognition. Support for autonomy involves relationship building, becoming familiar with an individuals’ preferences, values, identity, and attitudes related to ethical issues and technology use and balancing caregiver’s and individual’s needs ³⁴. While these considerations were not raised by interview participants in this study, they alluded to autonomy when they spoke about how they valued their ability to make decisions on their own and their independence. Focus group conversations aligned more closely with the literature supporting the initial framework when discussion focused on the need for technology to be tailored to individual and care partner abilities, needs, and preferences, to be adaptable to match longer term needs and abilities, and to conform to the person’s needs instead of the person conforming to technology demands. Thus, the focus of autonomy is on how the individual is supported to be involved in decision-making and how decisions align with their values, identity, and preferences when their decision-making capacity declines. For example, knowledge of whether the person values going for a walk on their own more than they value their privacy with regards to being monitored can inform the decision to use tracking technology.

Of note, focus groups participants acknowledged ethical considerations but put the onus on healthcare providers and technical support personnel to be knowledgeable of potential ethical concerns and address these.

Categories identified in this research and focus group discussions also lend support to concepts described in the framework including Technology Purpose, Tailoring Design to Abilities, Tailoring Selection and Application, and Providing Training and Support. For example, the category of Technology Utility highlights the need to consider the technological purpose such as monitoring health behaviors and promoting safety in the context of whether it could be useful to the individual or not. As well the issues related to equipment maintenance raised by participants highlighted the need for ongoing technology support.

The study used co-design principles to validate and further develop the Framework for Compassionate Use of Technology with Persons with Cognitive Decline and their Care Partners. Through the process, tools to support compassionate recommendation and support for home monitoring technology use were also developed. While interview and focus group feedback lends support to the framework, more research is needed to further validate the framework and to test its applicability and usefulness in practice for supporting compassionate care.

Limitations

The study supports the Framework for Compassionate Use of Technology with Persons with Cognitive Decline and their Care Partners based on participants’ feedback. However, the limited diversity and size of the sample limits generalizability. The sample of people with cognitive decline and care partners had limited gender and racial diversity and the sample of healthcare providers was small and limited to one profession. As well, participants who chose to participate may be more comfortable using technology and have different views than those who are less comfortable. While we made efforts to accommodate the needs of participants with cognitive decline to enable full participation, the virtual nature of the focus groups may have affected their ability to provide in-depth feedback. As well, having both healthcare providers and people with cognitive decline in the same focus groups may have limited participants’ comfort with providing feedback.

Conclusions

The study provides initial support from participants with cognitive decline, their care partners, healthcare providers and technology researchers for the Framework for Compassionate Use of Technology with Persons with Cognitive Decline and their Care Partners. The domains and categories identified for participant interviews highlight the needs to consider ethical principles, overall usefulness and user preferences from both the care partner and person with cognitive decline perspectives. Focus group findings further support the key ideas in the framework. More research is needed to test and further develop the framework.