Online Platform for Dementia Care

(LMH-4-DCP Trial)

Overseen By Sydney C Saviano, B.A.

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Weill Medical College of Cornell University

Disqualifiers: Severe cognitive impairment, Long-term care, others

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

Compensation: Varies

Number of Visits: 3

70 Participants Needed

Trial Summary

What is the purpose of this trial?

The purpose of this study is to evaluate an online platform -- the Living Memory Home for Dementia Care Pairs (LMH-4-DCP) for persons with dementia and their family caregivers to engage in reminiscence activities together and record meaningful memories. The main aims of this study are: * To evaluate the feasibility and acceptability of the LMH-4-DCP platform. * To explore the potential for LMH-4-DCP to reduce feelings of pre-loss grief and enhancing relationship quality in dementia family caregivers and their care-recipients ('Care-Pairs') Care pair participants will be asked to log-in to LMH-4-DCP and complete study activities three times per week for two weeks. Researchers will compare the intervention group to an attention control condition to see if LMH-4-DCP's use is associated with reduced feelings of caregiver pre-loss grief and improved care pair relationship quality at follow-up.

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 Living Memory Home-4-Dementia Care Pairs?

Research shows that online platforms can improve communication and collaboration between family and professional caregivers, making them feel better informed and supported. This suggests that similar online treatments could be effective in enhancing dementia care at home. ^{1 2 3 4 5}

Is the online platform for dementia care safe for humans?

The Care Ecosystem program, which is a collaborative dementia care approach, has been evaluated for its impact on medication use among people with dementia, but specific safety data for the online platform itself is not provided in the available research. ^{6 7 8 9 10}

How does the online platform for dementia care differ from other treatments?

The online platform for dementia care is unique because it provides digital services and interventions specifically designed for people with dementia and their caregivers, especially in rural areas. It includes tools like the 'caregivers' traffic-light' to assess and address caregiver burden early, and its flexible, plugin-based approach allows easy adaptation and implementation across different regions and languages. ^{11 12 13 14 15}

Research Team

Holly Prigerson, PhD

Principal Investigator

Weill Medical College of Cornell University

Francesca Falzarano, PhD

Principal Investigator

University of Southern California; Weill Cornell Medicine

Eligibility Criteria

This trial is for pairs consisting of a person with dementia and their family caregiver. They will use an online platform called LMH-4-DCP to engage in activities that involve reminiscing and recording memories together.

Inclusion Criteria

I scored 9 or higher on a test showing I can understand and agree to a study.

Family Caregivers: does not exhibit cognitive impairment (e.g., scoring < 3 on the SPMSQ)

I am the main caregiver for a family member with early to moderate dementia.

Exclusion Criteria

Family Caregivers: exhibits cognitive impairment (by scoring 3 or more on the SPMSQ)

PwD: PwD is living in a long-term care facility

Family Caregivers: is not the primary family caregiver of the PwD

Timeline

Screening

Participants are screened for eligibility to participate in the trial

1-2 weeks

Intervention

Care pair participants log-in to LMH-4-DCP and complete reminiscence activities three times per week

2 weeks

Online activities, 3 times per week

Follow-up

Participants are monitored for changes in relationship quality and grief severity

2 weeks

Treatment Details

Interventions

• Living Memory Home-4-Dementia Care Pairs

Trial Overview The study tests the LMH-4-DCP, an online tool designed for dementia care pairs to participate in reminiscence activities. It aims to see if this can reduce caregivers' feelings of grief before loss and improve the quality of their relationship with the person they're caring for.

Participant Groups

Group I: LMH-4-DCP Intervention Experimental Treatment 1 Intervention

Group II: Attention Control Arm Active Control 1 Intervention

Who Is Running the Clinical Trial?

Weill Medical College of Cornell University

Lead Sponsor

Trials

1,103

Recruited

1,157,000+

National Institute on Aging (NIA)

Collaborator

Trials

1,841

Recruited

28,150,000+

Findings from Research

The online platform tested in this pilot study was found to be user-friendly and valuable for both family and professional caregivers of persons with dementia, enhancing communication and collaboration over a 10-week period with 39 participants.

Caregivers reported feeling better informed and supported, leading to improved relationships and efficiency in care, although suggestions were made to integrate care organizations' record systems for optimal use.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

An Online Platform to Support the Network of Caregivers of People with Dementia. Boessen, ABCG., Verwey, R., Duymelinck, S., et al.[2020]

Psychoeducational programs and multicomponent interventions have shown promising results in improving the quality of care for people with dementia living at home, based on a review of 23 randomized controlled trials.

Cognitive rehabilitation is particularly effective when implemented early in the disease, and case managers can help reduce the need for institutionalization and other community services for dementia patients.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Best practices interventions to improve quality of care of people with dementia living at home. Zabalegui, A., Hamers, JP., Karlsson, S., et al.[2022]

An Artificial Neural Network (ANN) model was developed using clinical data from 320 patients to classify dementia stages based on symptom profiles, demonstrating that online symptom tracking can effectively stage dementia.

In a web-based dataset of 1930 profiles, the model classified 16% as having mild cognitive impairment, 36% as mild dementia, 29% as moderate, and 19% as severe, indicating that online symptom tracking can reveal a comprehensive view of dementia progression.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Staging dementia from symptom profiles on a care partner website. Rockwood, K., Richard, M., Leibman, C., et al.[2021]

The CareVirtue journal feature was effectively used by care networks of Alzheimer's patients for 60 days, facilitating communication through information sharing, strategy development, and feedback among caregivers.

Primary caregivers found the journal useful at multiple levels, enhancing individual support and strengthening care network relationships, highlighting the importance of caregiver-centered technologies in dementia care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

"It made me feel like I wasn't alone in the darkness": exploring dementia care network communication and coordination through a digital health platform. Linden, A., Jolliff, A., Gonzalez, D., et al.[2023]

A scoping review of five studies involving 617 community-dwelling older adults with dementia suggests that smart home technologies may improve various health outcomes, including physical activity, sleep, and cognitive functioning.

Despite the potential benefits, the overall quality of the studies was low, indicating a need for more rigorous research to better understand the effectiveness of these technologies in supporting dementia care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

The effectiveness of smart home technologies to support the health outcomes of community-dwelling older adults living with dementia: A scoping review. Moyle, W., Murfield, J., Lion, K.[2021]

The pilot study of the 'Let's Talk Tech' intervention showed significant improvements in care partners' understanding of technology and their preparedness to make decisions about its use in dementia care, involving 29 dyads living with mild Alzheimer's disease.

Participants reported that the intervention facilitated meaningful conversations about technology preferences, indicating its potential to enhance communication and decision-making in dementia care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Preliminary Efficacy of Let's Talk Tech: Technology Use Planning for Dementia Care Dyads. Berridge, C., Turner, NR., Liu, L., et al.[2023]

The study successfully genotyped 573 older adults for the APOE gene using a remote saliva collection method, demonstrating the feasibility of online registries for gathering genetic data related to Alzheimer's disease risk.

Participants with the APOE ε4/ε4 genotype showed worse cognitive performance and greater decline in processing speed and attention, indicating a potential genetic link to cognitive decline in older adults.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Brain health registry GenePool study: A novel approach to online genetics research. Fockler, J., Kwang, W., Ashford, MT., et al.[2022]

In a study of 710 older patients (aged over 70) admitted to a hospital, 8.6% experienced reported adverse events (RAEs), with patient-related incidents linked to factors like male gender, delirium, and cognitive impairment.

Despite the high incidence of RAEs, which occurred at a rate of 2.1 per person year, these events were not associated with increased mortality during the hospital stay, as 11.1% of patients died regardless of RAE occurrence.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Prospective cohort study of adverse events in older people admitted to the acute general hospital: risk factors and the impact of dementia. Watkin, L., Blanchard, MR., Tookman, A., et al.[2021]

The Care Ecosystem (CE) program significantly reduced the use of potentially inappropriate medications (PIMs) among 490 community-dwelling individuals living with dementia over a 12-month period, with a notable decrease of 0.35 PIMs per participant compared to usual care.

The CE intervention not only lowered the overall number of PIMs, including anticholinergics, benzodiazepines, and opioids, but also led to more frequent adjustments in anti-dementia medication regimens, indicating an optimization of medication use in this population.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Effect of collaborative dementia care on potentially inappropriate medication use: Outcomes from the Care Ecosystem randomized clinical trial. Liu, AK., Possin, KL., Cook, KM., et al.[2023]

In a study of 7728 nursing home residents with Alzheimer's disease and psychosis, the most common adverse event was accidental injury, occurring at a rate of 97.7 per 100 person-years, highlighting the vulnerability of this population.

Other significant adverse events included death (44.6 per 100 person-years), infection (41.8 per 100 person-years), and pain (43.5 per 100 person-years), indicating a high incidence of serious health issues among these patients.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Adverse events among nursing home residents with Alzheimer's disease and psychosis. Oliveria, SA., Liperoti, R., L'italien, G., et al.[2019]

The project digiDEM Bayern aims to improve dementia care by providing a digital platform and patient registry, specifically targeting the needs of people with dementia and their caregivers in rural areas.

An online survey revealed significant gaps in the availability of digital services for dementia care, which digiDEM Bayern seeks to address, highlighting the need for enhanced digital support in this field.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Stakeholder Perspectives on the Key Components of a Digital Service Platform Supporting Dementia - digiDEM Bayern. Reichold, M., Dietzel, N., Karrer, L., et al.[2020]

The Dutch version of the RHAPSODY program for caregivers of individuals with young-onset dementia was well-received, showing high user acceptability and satisfaction, with most participants willing to use it again and recommend it to others.

The program effectively meets the need for tailored information and support about young-onset dementia, highlighting the importance of a centralized platform for educational resources, particularly regarding the diagnostic process.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

A cross-sectional evaluation of the Dutch RHAPSODY program: online information and support for caregivers of persons with young-onset dementia. Daemen, M., Bruinsma, J., Bakker, C., et al.[2022]

Researchers are conducting a trial to evaluate a web-based home-monitoring system specifically designed for individuals with mild dementia.

The study aims to assess the effectiveness and usability of this technology in supporting people with mild dementia in their daily lives.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Volunteers with mild dementia sought to trial monitoring system. [2019]

The CAREGIVERSPRO-MMD platform was found to be useful for 90% of caregivers and 89% of health professionals after one week of use, indicating its potential effectiveness in supporting dementia care.

While caregivers and professionals reported high satisfaction and ease of use (82% and 97% respectively), individuals with dementia rated the platform lower in usefulness (57%) and ease of use (41%), highlighting the need for further adaptations to better meet their needs.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

A Web-Based Platform for People With Memory Problems and Their Caregivers (CAREGIVERSPRO-MMD): Mixed-Methods Evaluation of Usability. Zafeiridi, P., Paulson, K., Dunn, R., et al.[2020]

The digiDEM Bayern project has developed a digital platform that includes the 'Angehörigenampel' (caregivers' traffic-light), which helps assess the physical and psychological burden on caregivers of people with dementia, aiming to address health issues early.

This digital intervention is designed as a flexible WordPress plugin, making it easy for other service providers, including those in different countries, to implement and adapt, thereby increasing accessibility for caregivers in need.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

eHealth Interventions for Dementia - Using WordPress Plugins as a Flexible Dissemination for Dementia Service Providers. Reichold, M., Selau, M., Graessel, E., et al.[2021]

References

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

An Online Platform to Support the Network of Caregivers of People with Dementia. [2020]

2. Ireland pubmed.ncbi.nlm.nih.gov

Best practices interventions to improve quality of care of people with dementia living at home. [2022]

3. Canada pubmed.ncbi.nlm.nih.gov

Staging dementia from symptom profiles on a care partner website. [2021]

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

"It made me feel like I wasn't alone in the darkness": exploring dementia care network communication and coordination through a digital health platform. [2023]

5. Ireland pubmed.ncbi.nlm.nih.gov

The effectiveness of smart home technologies to support the health outcomes of community-dwelling older adults living with dementia: A scoping review. [2021]

6. England pubmed.ncbi.nlm.nih.gov

Preliminary Efficacy of Let's Talk Tech: Technology Use Planning for Dementia Care Dyads. [2023]

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

Brain health registry GenePool study: A novel approach to online genetics research. [2022]

8. England pubmed.ncbi.nlm.nih.gov

Prospective cohort study of adverse events in older people admitted to the acute general hospital: risk factors and the impact of dementia. [2021]

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

Effect of collaborative dementia care on potentially inappropriate medication use: Outcomes from the Care Ecosystem randomized clinical trial. [2023]

10. England pubmed.ncbi.nlm.nih.gov

Adverse events among nursing home residents with Alzheimer's disease and psychosis. [2019]

11. Netherlands pubmed.ncbi.nlm.nih.gov

Stakeholder Perspectives on the Key Components of a Digital Service Platform Supporting Dementia - digiDEM Bayern. [2020]

12. Netherlands pubmed.ncbi.nlm.nih.gov

A cross-sectional evaluation of the Dutch RHAPSODY program: online information and support for caregivers of persons with young-onset dementia. [2022]

13. England pubmed.ncbi.nlm.nih.gov

Volunteers with mild dementia sought to trial monitoring system. [2019]

14. Canada pubmed.ncbi.nlm.nih.gov

A Web-Based Platform for People With Memory Problems and Their Caregivers (CAREGIVERSPRO-MMD): Mixed-Methods Evaluation of Usability. [2020]

15. Netherlands pubmed.ncbi.nlm.nih.gov

eHealth Interventions for Dementia - Using WordPress Plugins as a Flexible Dissemination for Dementia Service Providers. [2021]