skip to main content

Explore Research Products in the NSF-PAR

  • NSF Public Access
  • Search Results
  • Taking an (Embodied) Cue From Community Health: Designing Dementia Caregiver Support Technology to Advance Health Equity
Title: Taking an (Embodied) Cue From Community Health: Designing Dementia Caregiver Support Technology to Advance Health Equity
Dementia affects >50 million worldwide, causing progressive cognitive and physical disabilities. Its caregiving burden falls largely onto informal caregivers, who experience their own health problems, and face tremendous stress with little support–all exacerbated during COVID-19. In this paper, we present a new caregiver sup- port perspective, where the lenses of health equity and community health can shape future technology design. Through a 1.5 year long, in-depth research process with dementia community health workers, we learned how caregiving support technology can reflect key concepts in dementia community health practice. This paper makes two contributions: 1) We propose employing embodied cueing, such as imitation or action mimicry, as a communication modality that can align technology with community caregiving approaches, promote agency in people with dementia, and relieve caregiver burden, and 2) We suggest new avenues for HCI research to advance health equity in the context of dementia technology design.  more » « less
Award ID(s):
1915734
NSF-PAR ID:
10285170
Author(s) / Creator(s):
; ; ; ;
Date Published:
Journal Name:
CHI Conference on Human Factors in Computing Systems (CHI ’21)
Page Range / eLocation ID:
1 to 16
Format(s):
Medium: X
Sponsoring Org:
National Science Foundation
More Like this
  1. ; ; ; ; ; ; ( , A Computing Community Consortium (CCC) Quadrennial Paper)
    null (Ed.)
    Technology has the opportunity to assist older adults as they age in place, coordinate caregiving resources, and meet unmet needs through access to resources. Currently, older adults use consumer technologies to support everyday life, however these technologies are not always accessible or as useful as they can be. Indeed, industry has attempted to create smart home technologies (e.g., Microsoft HomeOS, Intel CareNet) with older adults as a target user group, however these solutions are oftenmore focused on the technical aspects and are short lived. In this paper, we advocate for older adults being involved in the design process - from initial ideation to product development to deployment. We encourage federally funded researchers and industry to create compensated, diverse older adult advisory boards to address stereotypes about aging while ensuring their needs are considered. We envision artificial intelligence (AI) systems that augment resources instead of replacing them - especially in under-resourced communities. Older adults rely on their caregiver networks and community organizations for social, emotional, and physical support; thus, AI should be used to coordinate resources better and lower the burden of connecting with these resources. Although sociotechnical smart systems can help identify needs of older adults, the lack of affordable research infrastructure and translation of findings into consumer technology perpetuates inequities in designing for diverse older adults. In addition, there is a disconnect between the creation of smart sensing systems and creating understandable, actionable data for older adults and caregivers to utilize. We ultimately advocate for a well-coordinated research effort across the United States that connects older adults, caregivers, community organizations, and researchers together to catalyze innovative and practical research for all stakeholders. 
    more » « less
  2. ; ; ; ; ( , In Proceedings of We Robot 2021)
    Robots have great potential to support people with dementia (PwD) and their caregivers. They can provide support for daily living tasks, conduct household chores, provide companionship, and deliver cognitive stimulation and training. Personalizing these robots to an individual’s abilities and preferences can help enhance the quality of support they provide, increase their usability and acceptability, and alleviate caregiver burden. However, personalization can also introduce many risks, including risks to the safety and autonomy of PwD, the potential to exacerbate social isolation, and risks of being taken advantage of due to dark patterns in robot design. In this article, we weigh the risks and benefits by drawing on empirical data garnered from the existing ecosystem of robots used for dementia caregiving. We also explore ethical considerations for developing personalized cognitively assistive robots for PwD, including how a robot can practice beneficence to PwD, where responsibility falls when harm to a PwD occurs because of a robot, and how a robot can acquire informed consent from a PwD. We propose key technical and policy concepts to help robot designers, lawmakers, and others to develop personalized robots that protect users from unintended consequences, particularly for people with cognitive impairments. 
    more » « less
  3. ; ; ; ; ( , Proceedings of We Robot 2021)
    Robots have great potential to support people with dementia (PwD) and their caregivers. They can provide support for daily living tasks, conduct household chores, provide companionship, and deliver cognitive stimulation and training. Personalizing these robots to an individual’s abilities and preferences can help enhance the quality of support they provide, increase their usability and acceptability, and alleviate caregiver burden. However, personalization can also introduce many risks, including risks to the safety and autonomy of PwD, the potential to exacerbate social isolation, and risks of being taken advantage of due to dark patterns in robot design. In this article, we weigh the risks and benefits by drawing on empirical data garnered from the existing ecosystem of robots used for dementia caregiving. We also explore ethical considerations for developing personalized cognitively assistive robots for PwD, including how a robot can practice beneficence to PwD, where responsibility falls when harm to a PwD occurs because of a robot, and how a robot can acquire informed consent from a PwD. We propose key technical and policy concepts to help robot designers, lawmakers, and others to develop personalized robots that protect users from unintended consequences, particularly for people with cognitive impairments. 
    more » « less
  4. ; ; ; ; ; ; ( , CSCW'22 Companion: Companion Publication of the 2022 Conference on Computer Supported Cooperative Work and Social Computing)
    When their child is hospitalized, parents take on new caregiving roles, in addition to their existing home and work-related responsibilities. Previous CSCW research has shown how technologies can support caregiving, but more research is needed to systematically understand how technology could support parents and other family caregivers as they adopt new coordination roles in their collaborations with each other. This paper reports findings from an interview study with parents of children hospitalized for cancer treatment. We used the Role Theory framework from the social sciences to show how parents adopt and enact caregiving roles during hospitalization and the challenges they experience as they adapt to this stressful situation. We show how parents experience 'role strain' as they attempt to divide caregiving work and introduce the concept of 'inter-caregiver information disparity.' We propose design opportunities for caregiving coordination technologies to better support caregiving roles in multi-caregiver teams. 
    more » « less
  5. ; ; ; ; ; ; ; ; ; ; et al ( , Journal of Advanced Nursing)
    Abstract Aim

    The aim of this study is to develop a Smarthealth system of monitoring, modelling, and interactive recommendation solutions (for caregivers) for in‐home dementia patient care that focuses on caregiver–patient relationships.

     Design

    This descriptive study employs a single‐group, non‐randomized trial to examine functionality, effectiveness, feasibility, and acceptability of the novel Smarthealth system.

     Methods

    Thirty persons with Alzheimer's Disease or related dementia and their family caregivers (N = 30 dyads) will receive and install Smarthealth technology in their home. There will be a 1‐month observation phase for collecting baseline mood states and a 2‐month implementation phase when caregivers will receive stress management techniques for each detected, negative mood state. Caregivers will report technique implementation and usefulness, sent via Ecological Momentary Assessment system to the study‐provided smartphone. Caregivers will provide daily, self‐reported mood and health ratings. Instruments measuring caregiver assessment of disruptive behaviours and their effect on caregivers; caregiver depressive symptoms, anxiety and stress; caregiver strain; and family functioning will be completed at baseline and 3 months. The study received funding in 2018 and ethics board approval in 2019.

     Discussion

    This study will develop and test novel in‐home technology to improve family caregiving relationships. Results from this study will help develop and improve the Smarthealth recommendation system and determine its usefulness, feasibility, and acceptability for persons with dementia and their family caregiver.

     Impact

    The Smarthealth technology discussed will provide in‐home stress reduction resources at a time when older adults may be experiencing increasingly high rates of isolation and anxiety and caregiver dyads may be experiencing high levels of relationship strain.

     Trial Registration

    This study was registered with Clinical Trials.gov (Identifier NCT04536701).

     
    more » « less
  • Citation Formats
  • MLA
  • APA
  • Chicago
  • BibTeX
  • Save / Share this Record
  • Send to Email