Health Information Technology for Dementia Care

Enrolling by invitation at 1 trial location

Overseen By Nicole Ruggiano, PhD, MSW

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Florida International University

Disqualifiers: Schizophrenia, Suicidal ideation, others

Stay on Your Current Meds You can continue your current medications while participating

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: Unknown

Duration: 6 months

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial aims to improve communication for people with Alzheimer's and similar dementias through an app called My PATI. The app assists dementia patients in expressing their care preferences and experiences, thereby easing caregiving. Participants will be divided into two groups: one using the app and the other receiving usual care. Ideal candidates are caregivers who provide at least two hours of daily assistance to someone with dementia and have regular internet access. As an unphased trial, participants can contribute to innovative research that may enhance caregiving for dementia patients.

Will I have to stop taking my current medications?

The trial information does not specify whether participants need to stop taking their current medications.

What prior data suggests that this AAC device is safe for dementia care?

Research has shown that health information technology can be safe for people with dementia. This technology enhances communication and care by allowing individuals with dementia to share their care preferences and experiences through a touchscreen device.

Although detailed safety data for this specific technology is not yet available, the trial is at a stage where safety is typically well-understood, suggesting the technology is likely to be well-tolerated.

In general, similar technologies have not presented major safety issues in past studies. They are designed to aid communication without causing harm. Therefore, even with limited specific data for this device, this approach is generally considered safe. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Health Information Technology for Dementia Care trial because it introduces an innovative approach by integrating the My PATI app into family-centered dementia care. Unlike standard care, which primarily involves medication and routine clinical visits, this trial leverages technology to enhance communication and caregiving. The My PATI app allows caregivers and healthcare providers to share real-time information, promoting personalized care and supporting the personhood of individuals with dementia. This could lead to more responsive and tailored interventions, potentially improving the quality of life for both patients and caregivers.

What evidence suggests that this AAC device is effective for improving communication in dementia care?

Research has shown that Health Information Technology (IT) can greatly enhance communication for people with dementia. In this trial, participants in the experimental arm will use the newly developed My PATI app, designed to aid communication for those with dementia. Studies have found that using electronic devices like the My PATI app can reduce feelings of depression and loneliness in people with dementia. Developers created this technology with input from potential users to ensure it meets their needs. Early findings suggest these tools can ease caregiving by improving interactions between caregivers and healthcare providers. ^{1 2 4 6 7}

Are You a Good Fit for This Trial?

This trial is for adults over 21 who care for someone with Alzheimer's or dementia, providing at least 2 hours of daily care. Participants must have internet access and speak English or Spanish. It includes people with neurocognitive disorders aged 60+, scoring ≤21 on a mental status exam, but excludes caregivers planning to quit soon, those caring for individuals in facilities, or anyone with major medical conditions themselves.

Inclusion Criteria

I am 21 years old or older.

I am 60 years old or older.

I am a caregiver and I speak English or Spanish.

Exclusion Criteria

You have thoughts of hurting yourself that you are actively thinking about.

I have a significant hearing or vision impairment.

Caregivers planning to end their role as caregiver within 6 months of study enrollment

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Treatment

Participants use the My PATI app as an adjunct to care and caregiving for 6 months

6 months

Regular use of the app and communication with providers

Follow-up

Participants are monitored for safety and effectiveness after treatment

4 weeks

What Are the Treatments Tested in This Trial?

Interventions

• CareHeroes
• Integration of Health Information Technology and Promotion of Personhood in Family-Centered Dementia Care

Trial Overview The study tests an Assistive and Alternative Communication (AAC) device integrated into the CareHeroes health IT system to enhance communication between patients with dementia, their caregivers, and healthcare providers over a period of 12 months.

How Is the Trial Designed?

Group I: Full Intervention Experimental Treatment 1 Intervention

Dyads (caregiver, PWD) randomly assigned to the experimental arm will have access to the newly developed My PATI app. Providers' will receive information via the app.

Group II: Usual Care Active Control 1 Intervention

Dyads (caregiver, PWD) randomly assigned to the usual care condition will receive usual care from the memory clinic.

Who Is Running the Clinical Trial?

Florida International University

Lead Sponsor

Trials

114

Recruited

19,400+

National Institute on Aging (NIA)

Collaborator

Trials

1,841

Recruited

28,150,000+

University of Alabama, Tuscaloosa

Collaborator

Trials

49

Recruited

17,900+

Published Research Related to This Trial

A study involving 55 individuals with dementia showed that a virtual conversational agent was perceived as easy to use and helped users feel confident, with many participants viewing it as a friend and assistant.

The findings highlight the importance of personalized and patient-centered design in technology-based interventions for dementia care, suggesting that multidisciplinary approaches are essential for effectiveness.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Toward the Integration of Technology-Based Interventions in the Care Pathway for People with Dementia: A Cross-National Study. Stara, V., Vera, B., Bolliger, D., et al.[2021]

A systematic review of 46 studies revealed that the perspectives of informal caregivers are most prominent regarding technology use among community-living older adults with dementia, highlighting the importance of ease of use, stability, and privacy.

Shared values among stakeholders include the desire for technology to enhance freedom and independence for older adults, while informal caregivers seek peace of mind and relief from their caregiving burden, indicating that understanding these perspectives is crucial for promoting technology adoption.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Perspectives of Stakeholders on Technology Use in the Care of Community-Living Older Adults with Dementia: A Systematic Literature Review. van Boekel, LC., Wouters, EJM., Grimberg, BM., et al.[2020]

Technology interventions for dementia care show promising results, with evidence indicating improvements in quality of life and behavioral outcomes, such as reduced falls, based on a review of 26 studies.

While caregivers and healthcare professionals report satisfaction with the usability of these technologies, high costs remain a barrier, and further research is needed to explore their overall impact on quality of life and job satisfaction.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

[Dementia and technology. A study of technology interventions in the healthcare for dementia patients and their caregivers]. Nijhof, N., van Gemert-Pijnen, JE., Dohmen, DA., et al.[2019]

A 6-month case study showed that technology can effectively engage individuals with dementia in activities, enhancing their quality of life in a memory care unit.

The study highlighted that caregivers can use technology in ways that align with their usual supportive care practices, suggesting that tech can complement traditional caregiving methods.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Involving family members in the implementation and evaluation of technologies for dementia: a dyad case study. Lazar, A., Demiris, G., Thompson, HJ.[2018]

A participatory design process involving 10 people with dementia and their carers led to the development of acceptable prototype technologies aimed at facilitating independence, such as an armband and an electronic notepad.

Participants expressed a need for discreet, user-friendly devices that integrate into daily life, emphasizing features like two-way communication and navigation assistance to enhance their confidence and reduce anxiety while engaging in activities.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Keeping In Touch Everyday (KITE) project: developing assistive technologies with people with dementia and their carers to promote independence. Robinson, L., Brittain, K., Lindsay, S., et al.[2022]

A Delphi study involving 21 experts identified 12 technology categories that are expected to be prevalent in dementia care over the next five years, highlighting both potential benefits and risks associated with their use.

To mitigate risks, experts recommended strategies such as involving users in the design process, ensuring data transparency, and providing education to users, emphasizing the importance of person-centered technology integration in dementia care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Domain Experts on Dementia-Care Technologies: Mitigating Risk in Design and Implementation. Berridge, C., Demiris, G., Kaye, J.[2023]

Caregivers of persons with dementia experience significant physical and psychological stress, highlighting the importance of collaboration with dementia coordinators to manage caregiving effectively.

While technology has the potential to ease caregiving tasks, both caregivers and dementia coordinators need support in choosing and implementing these technologies to avoid overwhelming caregivers with options they may not be equipped to handle.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Providing dementia care using technological solutions: An exploration of caregivers' and dementia coordinators' experiences. Kristiansen, S., Beck, M., Kabir, ZN., et al.[2022]

The CASEPLUS-SimPat web-based case management system was developed to improve coordination and communication among healthcare professionals caring for dementia patients, addressing the complex needs of these individuals with multimorbidity.

In a pilot test, CASEPLUS-SimPat demonstrated good usability, indicating it could enhance the care process for dementia patients by allowing better access to patient data and facilitating information exchange among caregivers and relatives.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

CASEPLUS-SimPat: An Intersectoral Web-Based Case Management System for Multimorbid Dementia Patients. Steiner, B., Zippel-Schultz, B., Popa, A., et al.[2020]

The Digital Alzheimer Center (DAC) was found to be generally useful for patients with dementia and their carers, with 65% of patients and 78% of carers appreciating its information and support features.

Despite its usefulness, only a minority of patients (33%) found the portal easy to learn, highlighting the need for better design and ongoing usability testing to improve user experience.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Evaluation of the Digital Alzheimer Center: Testing Usability and Usefulness of an Online Portal for Patients with Dementia and Their Carers. Hattink, B., Droes, RM., Sikkes, S., et al.[2022]

Citations

1. pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov/34542347/

Integration of Health Information Technology and Promotion of ... Our research team is developing a novel electronic AAC prototype with a touchscreen to promote communication and personhood for PLWD.

2. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC9012346/

Integration of Health Information Technology and Promotion of ... For the PLWD, these deficits can lead to several poor outcomes, such as depression, social isolation, mood and behavioral disturbances, and premature ...

3. researchgate.net researchgate.net/publication/357450704_Integration_of_health_information_technology_and_promotion_of_personhood_in_family-centered_dementia_care

Integration of health information technology and promotion ... Conclusion This presentation will provide content on the process of development and human‐computer interaction methodologies used to develop an ...

4. journals.healio.com journals.healio.com/doi/abs/10.3928/19404921-20210825-02

Intervention Trial | Research in Gerontological Nursing Integration of Health Information Technology and Promotion of Personhood in Family-Centered Dementia Care: Intervention Trial. Ellen L. Brown ...

5. discovery.fiu.edu discovery.fiu.edu/display/pub203227

Integration of Health Information Technology and ... Integration of Health Information Technology and Promotion of Personhood in Family-Centered Dementia Care Intervention Trial Article.

6. researchgate.net researchgate.net/profile/Ellen-Brown-7/publication/352713973_Integration_of_Health_Information_Technology_and_Promotion_of_Personhood_in_Family-_Centered_Dementia_Care/links/61118bae1e95fe241abbf249/Integration-of-Health-Information-Technology-and-Promotion-of-Personhood-in-Family-Centered-Dementia-Care.pdf

Integration-of-Health-Information-Technology-and- ... Integration of Health Information Technology and Promotion of. Personhood in Family-Centered Dementia Care. Ellen L Brown, EdD, MS, RN, FAAN1, Nicole Ruggiano ...

7. withpower.com withpower.com/trial/phase-neurocognitive-disorders-8-2023-ec4d3

Health Information Technology for Dementia Care This treatment is unique because it integrates health information technology to enhance person-centered care for dementia patients and their families, focusing ...