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The LBD Life Lab Department of Neurology / Norman Fixel Institute
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PACE-DLB Study: Summary of Results

Study Leader: Dr. Melissa Armstrong

Conclusion Date: 12/31/25

The LBD Life Lab leader Dr. Melissa Armstrong recently completed a 5-year study called: Identifying factors Predicting ACcurately End-of-life in Dementia with Lewy Bodies (PACE-DLB). This page outlines more about the study design, preliminary major findings, and research papers published by the team to date. The main analyses for PACE-DLB are in progress and will be published when they are complete.

Overview

About the Study

The PACE-DLB main goals were to:

  1. Understand what symptoms and conditions show that someone with DLB is approaching the end of life.
  2. Understand what factors affect quality of life for people with DLB and their caregivers.
  3. Understand what caregivers experience before and after their loved one’s death.

Study design

The PACE-DLB study enrolled pairs: a person in the moderate to advanced stages of dementia with Lewy bodies (DLB), and their primary caregiver. Participant pairs completed study visits over a phone or Zoom call with the study coordinator every six months for up to 5 years, or until the death of the person with DLB. Caregivers then completed one or more study visits after their loved one’s death about their well-being and grief experience.

About the participants

Participants with DLB

Participants with DLB were 75 years on average at their first visit. The average time that people had been living with DLB when they started the study was 3 years. Participants with DLB were mostly male (78%) and mostly lived at home (88%).

Caregiver participants

Caregiver participants were on average 67 years at their first visit. Caregivers were mostly female (86%) and mostly spouses (80%). However, there were some adult child caregivers (15%) and other relationships (5%).

DLB symptoms and caregiver experiences

Common symptoms

The most common symptoms that participants with DLB experienced were:  

  • cognitive impairment (memory and thinking changes)
  • Parkinsonism (shakiness, stiffness, balance issues, and/or difficulty walking)
  • irregular sleeping (sleeping too much or too little)
  • apathy (lack of interest)
  • hallucinations (seeing things that aren’t there)
  • depression
  • anxiety
  • cognitive fluctuations (changes in attention and alertness, like staring off into space)
  • urinary incontinence

These symptoms were not as common as the above but still were experienced by over half of participants with DLB:

  • orthostatic hypotension (dizziness when changing from seated or lying down to standing)
  • constipation
  • falls
  • bowel incontinence
  • needing extensive help with daily activities like bathing, brushing teeth, and moving around the house
  • Parkinsonism

How symptoms changed over time

Over time, dementia and behavioral symptoms worsened. Between the first and last study visit, the number of people who reported these symptoms and conditions increased:

  • irregular sleeping (too much or too little)
  • difficulty swallowing
  • bowel incontinence
  • severe weight loss
  • daytime sleepiness
  • choking
  • pressure ulcers/bedsores
  • needing extensive help with activities of daily living
  • urinary incontinence

There were also increases in the number of people with DLB who were receiving hospice/palliative care and who lived in residential care (like a nursing home or assisted living).

Symptoms that decreased over time

Not many symptoms decreased over time spent in the study. There were some decreases in the number of people who had anxiety, crankiness or impatience, and orthostatic hypotension. This may be because participants with DLB became sleepier over time and were walking less.

Common caregiver experiences

We asked caregivers many questions about their emotional experiences and well-being. 9 out of 10 caregivers felt very supported by friends, family, and/or a significant other. Over 80% of caregivers were satisfied with the medical care their loved one was receiving and the amount of information available about DLB. Almost all caregivers felt that they were a resilient person.

At the first study visit, about 40% of caregivers had moderate to high depression symptoms. 4 out of 5 caregivers felt moderate-high levels of burden. The DLB behavioral symptoms that caregivers found the most distressing were:

  • apathy (lack of interest)
  • irregular sleeping (sleeping too little or too much)
  • depression
  • anxiety
  • resistance to help

Causes of death and end-of-life experiences

132 participants with DLB died during the study. At the time of death, people with DLB had been living with the diagnosis for an average of about 4 years. The minimum time since diagnosis at death was under 1 year, and the maximum was 15 years.

Sometimes it takes people a while to get diagnosed with DLB. People may have had symptoms before they were diagnosed by a doctor. Thus, the time from the start of symptoms to someone dying will be longer than the 4 year estimate above.

Causes of death

Caregivers were asked what caused the death of the person with DLB. Sometimes more than one problem contributed to the death. For example, someone might have had a fall and an infection.

The main causes of death were:

  • failure to thrive, where the person stops eating and drinking (49%)
  • trouble swallowing, pneumonia, and/or aspiration (26%)
  • other medical issues like a heart attack or stroke (17%)

Less common causes were complications from a fall (7%) and complications from pressure ulcers/bedsores (3%).

Most participants died from DLB-related causes only. However, 1 in 10 participants with DLB died from another medical condition. For 8% of participants, the cause of death was unknown.

Care at end-of-life

About half of participants with DLB died at home. The other half died in residential care, hospice facilities, or the hospital (although dying in the hospital was uncommon). 9 out of 10 participants with DLB received hospice care.

Caregiver experiences at the death

  • 61% of caregivers said they felt prepared for what to expect at the end of their loved one’s life.
  • 66% of caregivers felt like the death of their loved one was expected:  They knew it was coming.
  • Over 85% of caregivers were happy with the care their loved one received at the end of their life.

Research papers published

The PACE-DLB Study team is working on publishing research papers that report the study findings. The final analyses are in progress and will be posted when they are complete.

So far, the team has published four papers. To learn more about the paper topics and access the full text articles, visit the links below:

For a more detailed summary of study results, you may contact DLB-support@neurology.ufl.edu.