Health Information Technology for Dementia Care

Recruiting at 1 trial location

Overseen By Nicole Ruggiano, PhD, MSW

Age: 18+

Sex: Any

Travel: May Be Covered

Time Reimbursement: Varies

Trial Phase: Academic

Recruiting

Sponsor: Florida International University

Disqualifiers: Schizophrenia, Suicidal ideation, others

Stay on Your Current Meds

No Placebo Group

Trial Summary

What is the purpose of this trial?

Alzheimer's disease and related dementias (ADRD) are leading causes of disability and often result in communication deficits of the person with dementia (PWD) that can complicate ADRD caregiving and clinical care. The research team will work with stakeholders to develop and design a personalized Assistive and Alternative Communication (AAC) device that relies on information technology (IT) and touchscreens to promote communication and personhood for PWD about their care preferences and experiences. This study will integrate the AAC into an existing health IT intervention that already facilitates clinical communication between caregivers and providers of PWD. A clinical trial will be conducted to evaluate outcomes of 58 dyads (PWD/caregivers) and their health care provider utilizing the My PATI (My Person Assisted Touchscreen Interface)intervention as an adjunct to care and care giving for 6 months.

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 data supports the effectiveness of the treatment CareHeroes for dementia care?

Research shows that technology can help people with dementia live more independently and improve their quality of life. Caregivers also find technology useful for reducing their stress and improving communication, which suggests that treatments like CareHeroes could be effective in supporting dementia care. ^{1 2 3 4 5}

How is the Health Information Technology for Dementia Care treatment different from other treatments?

This treatment is unique because it integrates health information technology to enhance person-centered care for dementia patients and their families, focusing on improving communication and coordination among healthcare providers and caregivers through online portals and web-based systems. ^{4 6 7 8 9}

Eligibility Criteria

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

Trial Timeline

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

Treatment Details

Interventions

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

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.

Participant Groups

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+

Findings from Research

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 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]

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]

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]

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]

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]

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]

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]

References

1. England pubmed.ncbi.nlm.nih.gov

Keeping In Touch Everyday (KITE) project: developing assistive technologies with people with dementia and their carers to promote independence. [2022]

2. Switzerland 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. [2020]

3. United States pubmed.ncbi.nlm.nih.gov

Involving family members in the implementation and evaluation of technologies for dementia: a dyad case study. [2018]

4. England pubmed.ncbi.nlm.nih.gov

Providing dementia care using technological solutions: An exploration of caregivers' and dementia coordinators' experiences. [2022]

5. England pubmed.ncbi.nlm.nih.gov

Domain Experts on Dementia-Care Technologies: Mitigating Risk in Design and Implementation. [2023]

6. Switzerland pubmed.ncbi.nlm.nih.gov

Toward the Integration of Technology-Based Interventions in the Care Pathway for People with Dementia: A Cross-National Study. [2021]

7. United States pubmed.ncbi.nlm.nih.gov

CASEPLUS-SimPat: An Intersectoral Web-Based Case Management System for Multimorbid Dementia Patients. [2020]

8. Netherlands pubmed.ncbi.nlm.nih.gov

[Dementia and technology. A study of technology interventions in the healthcare for dementia patients and their caregivers]. [2019]

9. Canada 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. [2022]