An official website of the United States government
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
Empowering Dementia Caregivers: Incorporating Caregiving Training Resources Into Current Procedural Technology Codes
Abstract Purpose/ObjectivesWe 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/ProgramIn 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. OutcomeImplementing 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. ConclusionActivating CPT codes for caregiving training services may enhance caregivers' support and skills, including dementia care.
more »
« less
- Award ID(s):
- 1838589
- PAR ID:
- 10502112
- Publisher / Repository:
- Wolters Kluwer
- Date Published:
- Journal Name:
- Clinical Nurse Specialist
- Volume:
- 38
- Issue:
- 2
- ISSN:
- 0887-6274
- Page Range / eLocation ID:
- 107 to 109
- Subject(s) / Keyword(s):
- dementia caregiving nursing
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
More Like this
-
-
Abstract AimThe 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. DesignThis descriptive study employs a single‐group, non‐randomized trial to examine functionality, effectiveness, feasibility, and acceptability of the novel Smarthealth system. MethodsThirty 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. DiscussionThis 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. ImpactThe 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 RegistrationThis study was registered with Clinical Trials.gov (Identifier NCT04536701).more » « less
-
BackgroundAlthough family caregivers play a critical role in care delivery, research has shown that they face significant physical, emotional, and informational challenges. One promising avenue to address some of caregivers’ unmet needs is via the design of digital technologies that support caregivers’ complex portfolio of responsibilities. Augmented reality (AR) applications, specifically, offer new affordances to aid caregivers as they perform care tasks in the home. ObjectiveThis study explored how AR might assist family caregivers with the delivery of home-based cancer care. The specific objectives were to shed light on challenges caregivers face where AR might help, investigate opportunities for AR to support caregivers, and understand the risks of AR exacerbating caregiver burdens. MethodsWe conducted a qualitative video elicitation study with clinicians and caregivers. We created 3 video elicitations that offer ways in which AR might support caregivers as they perform often high-stakes, unfamiliar, and anxiety-inducing tasks in postsurgical cancer care: wound care, drain care, and rehabilitative exercise. The elicitations show functional AR applications built using Unity Technologies software and Microsoft Hololens2. Using elicitations enabled us to avoid rediscovering known usability issues with current AR technologies, allowing us to focus on high-level, substantive feedback on potential future roles for AR in caregiving. Moreover, it enabled nonintrusive exploration of the inherently sensitive in-home cancer care context. ResultsWe recruited 22 participants for our study: 15 clinicians (eg, oncologists and nurses) and 7 family caregivers. Our findings shed light on clinicians’ and caregivers’ perceptions of current information and communication challenges caregivers face as they perform important physical care tasks as part of cancer treatment plans. Most significant was the need to provide better and ongoing support for execution of caregiving tasks in situ, when and where the tasks need to be performed. Such support needs to be tailored to the specific needs of the patient, to the stress-impaired capacities of the caregiver, and to the time-constrained communication availability of clinicians. We uncover opportunities for AR technologies to potentially increase caregiver confidence and reduce anxiety by supporting the capture and review of images and videos and by improving communication with clinicians. However, our findings also suggest ways in which, if not deployed carefully, AR technologies might exacerbate caregivers’ already significant burdens. ConclusionsThese findings can inform both the design of future AR devices, software, and applications and the design of caregiver support interventions based on already available technology and processes. Our study suggests that AR technologies and the affordances they provide (eg, tailored support, enhanced monitoring and task accuracy, and improved communications) should be considered as a part of an integrated care journey involving multiple stakeholders, changing information needs, and different communication channels that blend in-person and internet-based synchronous and asynchronous care, illness, and recovery.more » « less
-
BackgroundAlzheimer's disease affects 55 million people worldwide. As the disease progresses, these individuals require a devoted caregiver, often a family member, who provides evolving complex care. Caregivers can experience a variety of ongoing stressors, resulting in reductions in caregiver emotional well-being (and other quality-of-life indicators). Information and communication technologies provide an excellent opportunity to train caregivers remotely and help them to manage these stressors and related distress. ObjectiveThis protocol describes the theoretical rationale, study design, and methods of a new, technologically enhanced psychoeducational skill-building intervention for caregivers of people with dementia that includes a virtual reality component. MethodsThrough Alzheimer’s Eyes is a 4-week, single-arm, pre-post test pilot study consisting of 4 sessions of 90 minutes each that are delivered by videoconferencing. These sessions include a weekly virtual reality experience characterizing the journey of an older Latina with Alzheimer's disease from her perspective to help caregivers see through the eyes of a person with dementia. The 4 sessions cover the skill-training topics of communication, managing challenging behaviors and unhelpful thoughts, the importance of self-care, and mindfulness—all of which are key components designed to reduce stress and distress in family caregivers. Individual interviews conducted before and after the intervention gather participant insights into the intervention, evaluate its feasibility and acceptability, and assess its impact on key outcomes. ResultsData collection for the study started in January 2022, and the results are expected to be submitted for publication in the second half of 2023. Twenty caregivers from the United States have completed the workshop to date. Preliminary data gathered from these participants support the intervention’s feasibility and acceptability. ConclusionsThrough Alzheimer’s Eyes leverages existing technology combined with psychoeducational skill building to help caregivers manage their stress, regardless of their location. International Registered Report Identifier (IRRID)DERR1-10.2196/42655more » « less
-
null (Ed.)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
- Free Publicly Accessible Full Text
-
Accepted Manuscript1.0
- Journal Article:
- https://doi.org/10.1097/NUR.0000000000000803
