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

Summary

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.

Conditions

• Dementia

Interventions

OTHER

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.

Sponsors & Collaborators

• Helse Vest

  collaborator OTHER

• Haukeland University Hospital

  collaborator OTHER

• Haraldsplass Deaconess Hospital

  collaborator OTHER

• Bergen Red Cross Nursing Home

  collaborator UNKNOWN

• University of Bergen

  lead OTHER

Principal Investigators

• Bettina S Husebo, MD, PhD · University of Bergen, Center for Elderly and Nursing Home Medicine, Neuro-SysMed Center

• Monica Patrascu, Eng, PhD · University of Bergen, Center for Elderly and Nursing Home Medicine, Neuro-SysMed Center

• Lydia Boyle, MSc, DPT · University of Bergen, Center for Elderly and Nursing Home Medicine, Neuro-SysMed Center

Eligibility

Min Age

65 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2023-05-02

Primary Completion

2026-05-01

Completion

2026-05-01

Countries

• Norway

Study Locations