Perceived Need and Acceptability of an App to Support Activities of Daily Living in People With Cognitive Impairment and Their Carers: Pilot Survey Study

Background By 2050, nearly 13 million Americans will have Alzheimer disease and related dementias (ADRD), with most of those with ADRD or mild cognitive impairment (MCI) receiving home care. Mobile telepresence robots may allow persons with MCI or ADRD to remain living independently at home and ease the burden of caregiving. The goal of this study was to identify how an existing mobile telepresence robot can be enhanced to support at-home care of people with MCI or ADRD through key stakeholder input. Objective The specific aims were to assess what applications should be integrated into the robot to further support the independence of individuals with MCI or ADRD and understand stakeholders’ overall opinions about the robot. Methods We conducted in-person interviews with 21 stakeholders, including 6 people aged >50 years with MCI or ADRD living in the community, 9 family caregivers of people with MCI or ADRD, and 6 clinicians who work with the ADRD population. Interview questions about the robot focused on technology use, design and functionality, future applications to incorporate, and overall opinions. We conducted a thematic analysis of the data obtained and assessed the patterns within and across stakeholder groups using a matrix analysis technique. Results Overall, most stakeholders across groups felt positively about the robot’s ability to support individuals with MCI or ADRD and decrease caregiver burden. Most ADRD stakeholders felt that the greatest benefits would be receiving help in emergency cases and having fewer in-person visits to the doctor’s office. Caregivers and clinicians also noted that remote video communication with their family members using the robot was valuable. Adding voice commands and 1-touch lifesaving or help buttons to the robot were the top suggestions offered by the stakeholders. The 4 types of applications that were suggested included health-related alerts; reminders; smart-home–related applications; and social, entertainment, or well-being applications. Stakeholders across groups liked the robot’s mobility, size, interactive connection, and communication abilities. However, stakeholders raised concerns about their physical stability and size for individuals living in smaller, cluttered spaces; screen quality for those with visual impairments; and privacy or data security. Conclusions Although stakeholders generally expressed positive opinions about the robot, additional adaptations were suggested to strengthen functionality. Adding applications and making improvements to the design may help mitigate concerns and better support individuals with ADRD to live independently in the community. As the number of individuals living with ADRD in the United States increases, mobile telepresence robots are a promising way to support them and their caregivers. Engaging all 3 stakeholder groups in the development of these robots is a critical first step in ensuring that the technology matches their needs. Integrating the feedback obtained from our stakeholders and evaluating their effectiveness will be important next steps in adapting telepresence robots.

Section: Discussionsupporting

confidence: 90%

Improving a Mobile Telepresence Robot for People With Alzheimer Disease and Related Dementias: Semistructured Interviews With Stakeholders

Shin¹,

McLaren²,

Ramsey³

et al. 2022

“…Overall, the stakeholder group participants share a widespread belief about the benefits of technology in general and about the Generation Connect platform, specifically with regard to the platform’s support efforts for caring for individuals with dementia in their homes. In general, this finding supports the benefit of technology acceptance for promoting technology use [ 21 - 24 ]. It is clear that in this case, familiarity breeds acceptance, with many FCGs reporting using the Generation Connect platform during their shifts.…”

Section: Discussionsupporting

confidence: 72%

Refining a Digital Therapeutic Platform for Home Care Agencies in Dementia Care to Elicit Stakeholder Feedback: Focus Group Study With Stakeholders

Gilson¹,

Gassman²,

Dodds³

et al. 2022

Background Persons living with dementia require increasing levels of care, and the care model has evolved. The Centers for Medicare and Medicaid Services is transitioning long-term care services from institutional care to home- or community-based services, including reimbursement for nonclinical services. Although home care companies are positioned to handle this transition, they need innovative solutions to address the special challenges posed by caring for persons living with dementia. To live at home longer, these persons require support from formal caregivers (FCGs; ie, paid professionals), who often lack knowledge of their personal histories and have high turnover, or informal caregivers (eg, family or friends), who may have difficulty coping with behavioral and psychological symptoms of dementia. The Generation Connect platform was developed to support these individuals and their formal and informal caregivers. In preliminary studies, the platform improved mood and influenced caregiver satisfaction. To enhance platform effectiveness, Generation Connect received a grant from the National Institutes of Health Small Business Innovation Research to improve clinical outcomes, reduce health care costs, and lower out-of-pocket costs for persons living with dementia who receive care through home care agencies. Objective This study aims to evaluate information elicited from a series of stakeholder focus groups to understand existing processes, needs, barriers, and goals for the use of the Generation Connect platform by home care agencies and formal and informal caregivers. Methods A series of focus groups were conducted with home care agency corporate leadership, home care agency franchise owners, home care agency FCGs, and informal caregivers of persons living with dementia. The qualitative approach allowed for unrestricted idea generation that best informed the platform development to enable home care providers to differentiate their dementia care services, involve informal caregivers, improve FCG well-being, and extend the ability of persons living with dementia to age in place. Using the Technology-Enabled Caregiving in the Home framework, an inductive and iterative content analysis was conducted to identify thematic categories from the transcripts. Results Overall, 39 participants participated across the 6 stakeholder focus groups. The following five overarching themes were identified: technology related; care services; data, documentation, and outcomes; cost, finance, and resources; and resources for caregivers. Within each theme, the most frequent subthemes were identified. Exemplar stakeholder group statements provided support for each of the identified themes. Conclusions The focus group results will inform the further development of the Generation Connect platform to reduce the burden of caregiving for persons living with dementia, evaluate changes in cognition, preserve functional independence, and promote caregiver engagement between these individuals. The next step is to evaluate the effectiveness of the revised platform in the National Institutes of Health Small Business Innovation Research phase 2 clinical trial to assess the efficacy of its evidence-based interventions and market viability.

“…Approximately 7% (2/28) of studies targeted caregivers who reported being isolated [ 56 ] or experiencing caregiving strain [ 38 ]. Caregivers most commonly provided care to older adults with dementia or other forms of cognitive impairment [ 37 - 39 , 41 - 44 , 46 , 47 , 50 - 56 , 58 - 60 , 62 , 64 ]. Other studies recruited caregivers who provided care to older adults with urinary incontinence [ 63 ], older veterans who were medically complex [ 45 ], and older adults with functional loss or struggling to remain independent at home [ 49 , 57 , 61 ].…”

Section: Resultsmentioning

confidence: 99%

“…Potential sources of bias within other quantitative studies include a lack of control groups [ 60 , 62 , 63 ] and limited consideration of potential confounders [ 41 , 56 ]. Most of the included quantitative studies recruited small convenience samples of caregivers or caregiver–care recipient dyads; for example, recruiting from single clinics [ 38 , 39 ] or from attendees of an Alzheimer’s Association chapter event [ 50 ]. Included qualitative studies were most often limited by a lack of clear alignment between philosophical underpinnings, methodology, and research questions or objectives [ 49 - 53 , 55 - 58 , 60 , 62 ].…”

Section: Resultsmentioning

confidence: 99%

mHealth Interventions to Support Caregivers of Older Adults: Equity-Focused Systematic Review

Garnett¹,

Northwood²,

Ting³

et al. 2022

Background Informal caregivers, hereafter referred to as caregivers, provide support to older adults so that they can age safely at home. The decision to become a caregiver can be influenced by individual factors, such as personal choice, or societal factors such as social determinants of health, including household income, employment status, and culture-specific gender roles. Over time, caregivers’ health can be negatively affected by their caregiving roles. Although programs exist to support caregivers, the availability and appropriateness of services do not match caregivers’ expressed needs. Research suggests that supportive interventions offered through mobile health (mHealth) technologies have the potential to increase caregivers’ access to supportive services. However, a knowledge gap remains regarding the extent to which social determinants of health are considered in the design, implementation, and evaluation of mHealth interventions intended to support the caregivers of older adults. Objective This study aimed to conduct a systematic review to determine how health equity is considered in the design, implementation, and evaluation of mHealth interventions for caregivers of older adults using Cochrane Equity’s PROGRESS-Plus (place of residence, race, ethnicity, culture, language, occupation, gender, religion, education, social capital, socioeconomic status–plus age, disability, and sexual orientation) framework and synthesize evidence of the impacts of the identified caregiver-focused mHealth interventions. Methods A systematic review was conducted using 5 databases. Articles published between January 2010 and June 2021 were included if they evaluated or explored the impact of mHealth interventions on the health and well-being of informal caregivers of older adults. mHealth interventions were defined as supportive services, for example, education, that caregivers of older adults accessed via mobile or wireless devices. Results In total, 28 articles met the inclusion criteria and were included in the review. The interventions evaluated sought to connect caregivers with services, facilitate caregiving, and promote caregivers’ health and well-being. The PROGRESS-Plus framework factors were mainly considered in the results, discussion, and limitations sections of the included studies. Some PROGRESS-Plus factors such as sexual orientation, religion, and occupation, received little to no consideration across any phase of the intervention design, implementation, or evaluation. Overall, the findings of this review suggest that mHealth interventions were positively received by study participants. Such interventions have the potential to reduce caregiver burden and positively affect caregivers’ physical and mental health while supporting them as caregivers. The study findings highlight the importance of making support available to help facilitate caregivers’ use of mHealth interventions, as well as in the use of appropriate language and text. Conclusions The successful uptake and spread of mHealth interventions to support caregivers of older adults will depend on creating opportunities for the inclusive involvement of a broad range of stakeholders at all stages of design, implementation, and evaluation.