# Caregivers' Experiences with and Perspectives on Communication with Persons with Dementia

> **NIH NIH R21** · UNIVERSITY OF PENNSYLVANIA · 2020 · $207,856

## Abstract

Project summary/abstract:
Paradoxical lucidity in people with dementia is an episode of unexpected, spontaneous,
meaningful, and relevant communication or connectedness in a patient who is assumed to have
permanently lost the capacity for coherent, verbal, or behavioral interaction due to a progressive
dementing process. At present, the phenomenology of paradoxical lucidity and its impact on the
clinical and daily decisions made by caregivers are poorly understood. This study seeks, for the
first time, to systematically describe what it is like to witness paradoxical lucidity in people with
dementia and to discover how witnessing it affects caregivers' clinical and daily care decisions.
A central premise of this project is that witnessing paradoxical lucidity is an emotionally and
clinically transformative event. Witnessing paradoxical lucidity might therefore lead to increased
feelings of caregiver grief, family conflict about appropriate treatment, or changes in attitudes
and behaviors toward the person with dementia. Discovering these changes can better prepare
clinicians to respond to caregivers' reports of paradoxical lucidity. The study uses a qualitative
interview design to assess the attitudes, emotions, and behaviors of caregivers of people with
dementia who have and have not witnessed paradoxical lucidity. The interview is also designed
to study the experiences of both terminal and non-terminal cases of paradoxical lucidity.
Terminal lucidity, which has been documented in case reports, is an episode of paradoxical
lucidity that occurs shortly before death. Non-terminal cases of paradoxical lucidity occur in
people with severe dementia who do not die shortly after the episode. The study is designed to
compare the experiences of caring for people with dementia among these various caregiver
groups. The interview guide will probe caregivers' beliefs about the cause(s) of paradoxical
lucidity and about the minds of patients who exhibit paradoxical lucidity, and changes in clinical
and daily care decisions resulting from witnessing paradoxical lucidity. Little is known about the
frequency of paradoxical lucidity in people with dementia or how caregivers might influence its
manifestation and measurement. This study will therefore guide the design of future
epidemiological studies of paradoxical lucidity and studies of its impact on caregivers and health
care systems, and assist clinicians in responding after caregivers report an episode of
paradoxical lucidity. The study will be conducted at University of Pennsylvania's Penn Memory
Center and produce empirical and theoretical work that can be used by scientists, clinicians,
and health care policy advocates in the area of aging and dementia.

## Key facts

- **NIH application ID:** 10094137
- **Project number:** 1R21AG069805-01
- **Recipient organization:** UNIVERSITY OF PENNSYLVANIA
- **Principal Investigator:** JASON H KARLAWISH
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $207,856
- **Award type:** 1
- **Project period:** 2020-09-15 → 2022-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10094137

## Citation

> US National Institutes of Health, RePORTER application 10094137, Caregivers' Experiences with and Perspectives on Communication with Persons with Dementia (1R21AG069805-01). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10094137. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*