Digital Phenotyping for Changes in Activity at the End of Life in People With Dementia

NCT ID: NCT06032091

Last Updated: 2024-05-10

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

50 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-05-02

Study Completion Date

2026-05-01

Brief Summary

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Background:

Almost 90% of people with dementia develop serious symptoms such as apathy, agitation, pain, and sleep disturbances. Movement and participation in daily activities also decrease dramatically over time. Traditional measures for these symptoms are usually in the form of a questionnaire and are not very accurate. Technology, such as a smartwatch, can be an effective tool for complementing traditional measures. Currently, there are few studies which look at activity and symptom measurements at the end-of-life. This makes results from this study extremely valuable for future care decisions, especially for people which may not be able to communicate their needs during the end-of-life period.

Method/Design:

DIgital PHenotyping in DEMentia (DIPH.DEM), a 3-year cross-sectional observational study (N=50), will look at activities, apathy, agitation, and sleep disturbances using sensing technologies to monitor participants at the end of life. The objective of the study is to use a smartwatch and wireless radar (bedside) device (Somnofy), in addition to validated assessment tools to describe the activity patterns for patients with dementia at the end of life (baseline and every 6.months). We hypothesize that this will enable better estimation of time of death, facilitating discussion surrounding improvement of end-of-life interventions and directives.

Discussion:

The use of sensors (smartwatch and wireless beside device) can provide valuable knowledge on living and dying with dementia, improve end-of-life directives, and provide guidance for timely, appropriate interventions, including referral to palliative services.

Impact on society:

DIPH.DEM has the potential to enable more timely, precise, and quality care for people with dementia living at home, in nursing homes, and hospitals.

Detailed Description

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About 90% of people with dementia develop behavioral and psychological symptoms such as agitation, depression and psychosis. In addition, their activity levels decrease over time. Traditional outcome measures can capture physical, mental and social activities of clinical conditions, but usually have low validity. The use of sensor technology in people with dementia is currently poorly validated. DIPH.DEM will examine whether digital tools such as a smartwatch and Somnofy (radar installation) can provide objective measurements of the patient's activities and symptoms throughout the nursing home/hospital stay, including the end of life phase. The participants are people with dementia, \>64 years, who are living in a nursing home. A selection of traditional tools and sensor data is collected at baseline and every 6 months (7 days continuous monitoring). If the participant has a significant change in health status, we will begin with continuous sensor measurements until the end of life (up to 12 weeks). DIPH.DEM can provide valuable information on activity development and symptom presentation toward the end of life in people with dementia. Informal caregivers (usually a family member) will be included to assist with the outcome measures within the study. Participants will be recruited from the Health Region West Norway and Bergen Municipality (sampling method is by invitation to volunteer). All consent procedures will be developed in accordance with Norwegian law.

Conditions

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Dementia

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Participants

Persons with dementia

No intervention

Intervention Type OTHER

The study is observational and will not include any specific interventions other than the regular care practice that the participants receive from their care providers. The study will use a wrist-mounted smartwatch for monitoring. Previous studies show acceptability toward wearable devices among persons with dementia; however, if the care staff recognize discomfort or distress caused by the device, it will be immediately removed.

Interventions

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No intervention

The study is observational and will not include any specific interventions other than the regular care practice that the participants receive from their care providers. The study will use a wrist-mounted smartwatch for monitoring. Previous studies show acceptability toward wearable devices among persons with dementia; however, if the care staff recognize discomfort or distress caused by the device, it will be immediately removed.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* People with dementia or who have a likely diagnosis of dementia
* Hospital (admitted for \>3 days)
* Nursing home resident
* \>64 years old
* Score of \<4 on the 4 A's Test for Delirium (4AT) will be required for inclusion (no delirium)

Exclusion Criteria

* People without dementia or cognitive impairment
* People that are considered already in a health status emergency (\< 6 weeks to live)
* People that are not living in the nursing home
Minimum Eligible Age

65 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Helse Vest

OTHER

Sponsor Role collaborator

Haukeland University Hospital

OTHER

Sponsor Role collaborator

Haraldsplass Deaconess Hospital

OTHER

Sponsor Role collaborator

Bergen Red Cross Nursing Home

UNKNOWN

Sponsor Role collaborator

University of Bergen

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Bettina S Husebo, MD, PhD

Role: STUDY_DIRECTOR

University of Bergen, Center for Elderly and Nursing Home Medicine, Neuro-SysMed Center

Monica Patrascu, Eng, PhD

Role: PRINCIPAL_INVESTIGATOR

University of Bergen, Center for Elderly and Nursing Home Medicine, Neuro-SysMed Center

Lydia Boyle, MSc, DPT

Role: STUDY_CHAIR

University of Bergen, Center for Elderly and Nursing Home Medicine, Neuro-SysMed Center

Locations

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Bergen Røde Kors Sykehjem AS

Bergen, Vestland, Norway

Site Status RECRUITING

Countries

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Norway

Central Contacts

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Lydia Dawn Boyle, MSc, DPT

Role: CONTACT

+4740518081

Monica Patrascu, Eng, PhD

Role: CONTACT

+4755588501

Facility Contacts

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Morten Amundsen

Role: primary

+4755397700

References

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Other Identifiers

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F-12829-D10484

Identifier Type: -

Identifier Source: org_study_id

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