Stories in the Moment: Dance Program for People Living With Dementia

NCT06221202 | Unknown

• 1 other identifier: 23-MAGD-101
• Study Type: interventional
• Target: 72
• Locations: 1 country
• Sites: 1

Brief Summary

This study is designed to evaluate the impact on the quality of life and wellbeing of a person-centered online dance program on people living with dementia or MCI and care partners. The duration of the study will be 1 year. Each participant in the study will be followed for approximately 4 months. The study includes joining a weekly 1-hour dance program online on Zoom for 12 weeks. Prior and after the dance program, participants will meet with the research coordinator to answer some questionnaires about wellbeing and reflections on their experience in the program. After the completion of the dance program, participants will be invited to join a focus group to reflect of the impact of the program with fellow participants. The study will enroll up to 72 participants. This includes 36 dyads of persons living with dementia or MCI and their care partners. The study will enroll community-dwelling people living with a diagnosis of mild cognitive impairment or mild to moderate-stage dementia and care partners living in the United States.

Conditions

Dementia; Mild Cognitive Impairment; Alzheimer Disease; Lewy Body Disease; Frontotemporal Dementia; Vascular Dementia

Keywords

Dance; Wellbeing; Belonging; Non-pharmacological intervention

Outcome Measures

Primary Outcomes (8)

• Wellbeing

  Measurement Tool: WHO (Five) Well-Being Index (1998 version) Descriptive Name of Scale: WHO-5 Scale of Wellbeing Measurement Parameter: Wellbeing Five statements scoring wellbeing over the last two weeks. Scoring: Score 0-5 (0: At no time; 5: All the time) The raw score is calculated by totaling the figures of the five answers. The raw score ranges from 0 to 25, 0 representing worst possible and 25 representing best possible quality of life. To obtain a percentage score ranging from 0 to 100, the raw score is multiplied by 4. A percentage score of 0 represents worst possible, whereas a score of 100 represents best possible quality of life.

  1-2 weeks pre 12-week dance intervention and 1-2 weeks post 12-week dance intervention

• Loneliness

  Measurement Tool: 6-item De Jong Gierveld Loneliness Scale Descriptive Name of Scale: A 6-item Scale for Overall, Emotional, and Social Loneliness Measurement Parameter: Loneliness Six statements scoring sense of loneliness over the last two weeks. Three statements address emotional loneliness; three statement address social loneliness; aggregate score represented total loneliness score. Scoring: Total loneliness score can be categorized into four levels: not lonely (score 0, 1), moderate lonely (score 2 through 4), severe lonely (score 5), and very severe lonely (score 6).

  1-2 weeks pre 12-week dance intervention and 1-2 weeks post 12-week dance intervention

• Anxiety

  Measurement Tool: Rating Anxiety in Dementia (RAID) Descriptive Name of Scale: Rating for Anxiety in Dementia-Scheduled Interview designed for evaluators without extensive clinical training Measurement Parameter: Loneliness 20-item scale and interview assessing anxiety severity of people living with dementia. Scoring: U. unable to evaluate. 0. absent. 1. mild or intermittent. 2. moderate. 3. severe Rating based on symptoms and signs occurring during two weeks prior to the interview. No score given if symptoms result from physical disability or illness. Total score is the sum of items 1 to 18. A score of 11 or more suggests significant clinical anxiety.

  1-2 weeks pre 12-week dance intervention and 1-2 weeks post 12-week dance intervention

• Belonging

  Measurement Tool: Sense of Belonging Scale Descriptive Name of Scale: Sense of Belonging Scale adapted for dance intervention Measurement Parameter: Sense of belonging 13 statements scoring sense of belonging and involvement. Scoring: 5-item Likert scale ranging from Strongly Agree - Strongly Disagree. Higher score of "Strongly Agree" indicates higher sense of belonging and involvement.

  1-2 weeks post 12-week dance intervention

• Participant Interest, Expectations and Perceived Wellbeing and Belonging

  Measurement Tool: Qualitative Questionnaire to Assess Pre-Intervention Interest, Expectations and Perceived Wellbeing and Belonging Measurement Parameter: Interest, expectations and perceived pre-intervention wellbeing and belonging 12-item descriptive questionnaire assessing pre-intervention interest, expectations and perceived sense of physical and mental wellbeing and belonging. Scoring: Responses are qualitative.

  1-2 weeks pre 12-week dance intervention

• Participant Satisfaction and Perceived Impact

  Measurement Tool: Questionnaire to Assess Post-Intervention Satisfaction and Perceived Impact of Dance Intervention Measurement Parameter: Satisfaction and perceived impact on wellbeing 20-item questionnaire assessing intervention satisfaction and perceived impact on physical and mental wellbeing. Scoring: Yes or No responses. Yes - indicates satisfaction or perceived positive impact. Open-ended questions offer space for qualifying responses. Maximum score of 20 indicated maximum satisfaction and perceived impact.

  1-2 weeks post 12-week dance intervention

• Participant focus group post-dance intervention

  Measurement Tool: Semi-structure focus group made up of participants following 12-week dance intervention online on Zoom. Measurement parameter: Satisfaction, participant feedback and perceived impact on wellbeing Scoring: Qualitative analysis

  Immediately post 12-week dance intervention

• Action Research Field Notes

  Measurement tool: Field notes taken by teaching artist Measurement parameter: De-identified notes by teaching artist of pedagogical and artistic observations made during the session including attendance, participant engagement, class design, facilitator delivery of content. Scoring: Qualitative analysis

  During 12-week dance intervention

Study Arms (1)

Stories in the Moment Dance Intervention

EXPERIMENTAL

12 weeks online dance program - 1hour/week for 12 weeks

Other: Stories in the Moment Dance Program - Online

Interventions

Stories in the Moment Dance Program - Online OTHER

Stories in the Moment is a co-creative dance, movement and storytelling program for persons living with dementia and care partners.

Stories in the Moment Dance Intervention

Eligibility Criteria

• Age: 50 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• age 50 or older
• a self-reported mild cognitive impairment or dementia diagnosis and mild-moderate dementia severity (confirmed by care partner or collateral)
• a care partner or a collateral (a family member, paid caregiver, or close friend who spends at least 8 hours/week with the person living with dementia and speaks fluent English) who consents to join the study

You may not qualify if:

• access to and basic ability to use the videoconferencing platform (Zoom) on a digital device (tablet, telephone or computer) (or access to support therein).
• age 18 and older
• speaks fluent English
• access to and basic ability to use the videoconferencing platform (Zoom) on a digital device (tablet, telephone or computer) (or access to support therein).
• Persons living with dementia unable to provide consent or assent. Persons living with dementia who do not have capacity to provide consent but are capable of providing assent will be included if a care partner or collateral who is a legally authorized representative provides consent.
• Lack of reliable access to a digital device with Zoom application.
• Lack of reliable access to a digital device with Zoom application.

Sponsors & Collaborators

• DanceStream Projects: lead
• Alzheimer's Association: collaborator

Study Sites (1)

Online

New York, New York, 11375, United States

RECRUITING

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MeSH Terms

Conditions

Dementia; Cognitive Dysfunction; Alzheimer Disease; Lewy Body Disease; Frontotemporal Dementia; Dementia, Vascular

Condition Hierarchy (Ancestors)

Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Neurocognitive Disorders; Mental Disorders; Cognition Disorders; Tauopathies; Neurodegenerative Diseases; Parkinsonian Disorders; Basal Ganglia Diseases; Movement Disorders; Synucleinopathies; Frontotemporal Lobar Degeneration; TDP-43 Proteinopathies; Proteostasis Deficiencies; Metabolic Diseases; Nutritional and Metabolic Diseases; Cerebrovascular Disorders; Intracranial Arteriosclerosis; Intracranial Arterial Diseases; Leukoencephalopathies; Arteriosclerosis; Arterial Occlusive Diseases; Vascular Diseases; Cardiovascular Diseases

Study Officials

• Magda Kaczmarska, MFA

  DanceStream Projects; Global Brain Health Institute

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Magda Kaczmarska, MFA

CONTACT

520-331-5726; magda.kaczmarska@gbhi.org

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Magdalena Kaczmarska, MFA, Principal Investigator

Model Details: Joining 12-week, 1 hour/week dance intervention online on Zoom.

Study Record Dates

• First Submitted: November 28, 2023
• First Posted: January 24, 2024
• Study Start: February 10, 2023
• Primary Completion: May 31, 2024
• Study Completion: October 31, 2024
• Last Updated: January 24, 2024

Record last verified: 2024-01

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)