skip to main content


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. 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
  2. Persons with dementia (PwD) are heavily dependent on the support of informal, dementia caregivers to fulfill their day-to-day care needs. Dementia caregivers, often friends and family members of the PwD, are unpaid, non-professional individuals who take on many of the care responsibilities. Due to the lack of formal training, social support, and information resources, among other factors, dementia caregivers are often at risk for negative outcomes such as stress and burden. There have not been any comprehensive assessment tools to predict these negative outcomes. Therefore, we employ the NASA TLX dimensions to conceptualize caregiver workload. This study operationalizes the NASA TLX dimensions in the context of dementia caregiving and illustrates examples for each of the dimensions. The results indicate that the NASA TLX does not include all of the factors necessary to conceptualize caregiver workload and prescribe a need for developing a robust caregiver workload assessment tool. 
    more » « less
  3. Abstract Purpose/Objectives

    We aim to explore Current Procedural Terminology (CPT) codes for caregiving training services and their potential impacts on caregivers of people living with dementia.

    Description of the Project/Program

    In response to the growing need for support for caregivers of people living with physical and mental health issues, CPT codes for caregiving training services will be activated for the calendar year 2024. These codes cover (1) family group behavior management and modification training services and (2) caregiver training for techniques to help patients maintain their quality of life. Caregivers will access such training support through the CPT codes provided by treating practitioners. The duration of training will vary by code.

    Outcome

    Implementing CPT codes for caregiver training services highlights the vital role of caregivers in patient care. This support may improve their skills and communication with healthcare providers. However, timing and accessibility in care delivery need clarification, especially for caregivers of people living with dementia. Regular skill assessment and culturally competent care are essential. Before providing the service, provider training may also promote person-centered care, benefiting patients and their caregivers.

    Conclusion

    Activating CPT codes for caregiving training services may enhance caregivers' support and skills, including dementia care.

     
    more » « less
  4. 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
  5. 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