skip to main content
US FlagAn official website of the United States government
dot gov icon
Official websites use .gov
A .gov website belongs to an official government organization in the United States.
https lock icon
Secure .gov websites use HTTPS
A lock ( lock ) or https:// means you've safely connected to the .gov website. Share sensitive information only on official, secure websites.


Title: Advance Planning for Technology Use in Dementia Care: Development, Design, and Feasibility of a Novel Self-administered Decision-Making Tool
BackgroundMonitoring technologies are used to collect a range of information, such as one’s location out of the home or movement within the home, and transmit that information to caregivers to support aging in place. Their surveilling nature, however, poses ethical dilemmas and can be experienced as intrusive to people living with Alzheimer disease (AD) and AD-related dementias. These challenges are compounded when older adults are not engaged in decision-making about how they are monitored. Dissemination of these technologies is outpacing our understanding of how to communicate their functions, risks, and benefits to families and older adults. To date, there are no tools to help families understand the functions of monitoring technologies or guide them in balancing their perceived need for ongoing surveillance and the older adult’s dignity and wishes. ObjectiveWe designed, developed, and piloted a communication and education tool in the form of a web application called Let’s Talk Tech to support family decision-making about diverse technologies used in dementia home care. The knowledge base about how to design online interventions for people living with mild dementia is still in development, and dyadic interventions used in dementia care remain rare. We describe the intervention’s motivation and development process, and the feasibility of using this self-administered web application intervention in a pilot sample of people living with mild AD and their family care partners. MethodsWe surveyed 29 mild AD dementia care dyads living together before and after they completed the web application intervention and interviewed each dyad about their experiences with it. We report postintervention measures of feasibility (recruitment, enrollment, and retention) and acceptability (satisfaction, quality, and usability). Descriptive statistics were calculated for survey items, and thematic analysis was used with interview transcripts to illuminate participants’ experiences and recommendations to improve the intervention. ResultsThe study enrolled 33 people living with AD and their care partners, and 29 (88%) dyads completed the study (all but one were spousal dyads). Participants were asked to complete 4 technology modules, and all completed them. The majority of participants rated the tool as having the right length (>90%), having the right amount of information (>84%), being very clearly worded (>74%), and presenting information in a balanced way (>90%). Most felt the tool was easy to use and helpful, and would likely recommend it to others. ConclusionsThis study demonstrated that our intervention to educate and facilitate conversation and documentation of preferences is preliminarily feasible and acceptable to mild AD care dyads. Effectively involving older adults in these decisions and informing care partners of their preferences could enable families to avoid conflicts or risks associated with uninformed or disempowered use and to personalize use so both members of the dyad can experience benefits.  more » « less
Award ID(s):
2125561
PAR ID:
10467713
Author(s) / Creator(s):
; ; ; ; ; ;
Publisher / Repository:
JMIR
Date Published:
Journal Name:
JMIR Aging
Volume:
5
Issue:
3
ISSN:
2561-7605
Page Range / eLocation ID:
e39335
Format(s):
Medium: X
Sponsoring Org:
National Science Foundation
More Like this
  1. 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
  2. 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)DERR1-10.2196/42655 
    more » « less
  3. Abstract As Americans live longer, a dynamic opportunity has arisen to provide enhanced resources to sustain their well-being. Cost-conscious, convenient in-home sensing will assist with chronic disease management, and become part of a long-term plan to support our aging population and shrinking healthcare workforce. The purpose of this study was to obtain input from older adults about (i) their comfort level and willingness to adopt different sensor technologies, and (ii) opinions on data sharing, security, and privacy to guide our sensor development. Over 4 different survey timeframes (2018-2022), adults aged 60 and older (N=112) completed our survey either in-person (n=77) or via a REDCap online survey (n=35) (53% female; 30% age >80; 78% college graduates; 19% living alone). Though there were significant differences (p< 0.05) in demographics based upon recruitment source, no differences in attitudes towards sensor use were found by age, gender, education, or marital status. Opinions and preferences for sensor type/number/install location, and data sharing preferences significantly differed (p< 0.05) by home living arrangements (independent, 55+ or continuous care communities). Similar to national surveys, changes in technology use were observed pre- versus post COVID. Respondents living in 55+ and continuous-care housing were more comfortable with having sensors installed in their homes than those in community dwelling independent housing. This study highlights the need to include end users throughout the lifecycle of product development and provides insights into preferences by older adults for sensor use and data sharing. 
    more » « less
  4. 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
  5. Abstract INTRODUCTIONOlder adults represent the fastest growing segment of the homeless community. Little is known about the prevalence of dementia and mild cognitive impairment (MCI) in this population. METHODSDementia and MCI screening using the Montreal Cognitive Assessment (MoCA) was incorporated into the standard senior evaluation for adult clients aged ≥ 55 in a large emergency homeless shelter. RESULTSIn a 6‐week period, 104 of 112 (92.9%) assessments were positive for dementia or MCI using a standard cutoff of 26, and 81 (72.3%) were positive using a conservative cutoff of 23. There was no significant difference in MoCA scores based on sex or education level, and no significant correlation between age and MoCA score. DISCUSSIONOlder adults experiencing homelessness may have a high likelihood of dementia or MCI. Routine MoCA screening in older adults experiencing homelessness is feasible and can help to identify services needed to successfully exit homelessness. 
    more » « less