Stories in the Moment: Dance Program for People Living With Dementia
Trial Snapshot
- Phase
- Not Applicable
- Status
- Recruiting
- Sponsor
- Enrollment
- 72
- Locations
- 1
- Primary Endpoint
- Anxiety
Study Overview
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.
Detailed Description
One third of older adults with cognitive impairment in the United States (est. 4.3 million individuals) live alone, which places them at higher levels of precarity and opens them up to the detrimental effects of isolation and stigma. Studies illuminate how the lack of appropriate services to support independent living for people with cognitive impairment influence the precarity that these older adults face, a precarity which has heightened significantly since the COVID-19 pandemic. For the 50 million people living with dementia (PLWD) globally, this lack of meaningful connection is compounded by the detrimental effects of a progressive disease which can impact affective states, mobility and spatial relationship, and ability to communicate or follow conversations. As a result, people living with dementia inevitably experience shifts in their modes and capacities for expression which influence their ability to express and feel connected to the communities around them. Reportedly, persons living with dementia and their care partners often experience a reduction in size of their social networks and loss of connection with others as the disease progresses.
The COVID-19 pandemic illustrated the feasibility and benefit of virtual social engagement programs for older adults and PLWD, offering a support network from the comfort of their home. Research into virtually delivered social programs for PLWD suggest implications beyond the context of COVID-19, where virtual models may support the social connectedness of those living in geographically marginalized and underserved areas. Additionally, evaluations of telemedicine programs list preferences among PLWD and care partners citing convenience from resources and time saved, and improved access as benefits to virtual engagement. This suggests that even now after the imposed physical isolation of the pandemic have been lifted, having access to creative social programming virtually will continue to be a lifeline for PLWD.
With global projections of dementia approaching 82 million people in 2030, the need for supporting and expanding networks of meaningful and stimulating connection for and with people living with dementia is evident. Increasingly, person-centered models of care for people living with dementia are becoming the gold standard globally, highlighting the necessity of creating meaningful relationships to support them. This underlines the demand for programs that engage with people living with dementia as opposed to only delivering programs at or to them. Relationality is key to meaningful citizenship and people living with dementia are not exempt from the right to it not immune to its benefits.
As highlighted by Dr. Livingston, "engaging in meaningful and pleasurable activities is hypothesized to improve health and wellbeing" for people living with dementia. The benefits of these social engagements include reconnecting individuals to their physical and social environment, supporting self- esteem, building neural connections through complex interactions and promoting a sense of role continuity, purpose, or personhood, self-identity, and meaning. Dance as a multi-modal activity which couples multiple cognitive tasks with aerobic exercise and social engagement, is increasingly lauded as a social engagement for older adults and PLWD. Dance, which promotes community engagement coupled with physical fitness, is the highest preferred physical activity among diverse community residing older adults.
A growing body of research illustrates the potential of dance in impacting brain health through: engaging motor control and function on multiple levels, supporting individual and social wellbeing, offsetting depression, and offering ameliorative cognitive effects through aerobic fitness and creative engagement. Additionally, social engagement, positive mood and physical activity are three of 12 modifiable risk factors for dementia, indicating the benefit of this activity across the life course.
Study Design
- Study Type
- Interventional
- Allocation
- Na
- Intervention Model
- Single Group
- Primary Purpose
- Supportive Care
- Masking
- None
Eligibility Criteria
- Ages
- 50 Years to — (Adult, Older Adult)
- Sex
- All
- Accepts Healthy Volunteers
- No
Inclusion Criteria
- •Inclusion Criteria (person living with dementia):
- •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
- •English fluency, categorized as not requiring translation into another language. Being non-verbal or having limited verbal ability will not be considered
Exclusion Criteria
- •but this condition will be noted.
- •access to and basic ability to use the videoconferencing platform (Zoom) on a digital device (tablet, telephone or computer) (or access to support therein).
- •Inclusion criteria (care partner or a collateral - defined as a family member, paid caregiver, or close friend who spends at least 8 hours/week with the person living with dementia):
- •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).
- •Exclusion Criteria (person living with dementia):
- •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.
- •Persons living with dementia with severe dementia (classified as being unable to sit up independently and being non-ambulatory within the upper extremities) will be excluded. Being non-verbal or having limited verbal ability will not be considered exclusion criteria but this condition will be noted. For these participants, attempts will be made to capture responses to questionnaires via alternative communication methods (gesture, facial expression, typing in the chat) and the care partner or collateral will be asked to corroborate or supplement the responses.
- •Lack of reliable access to a digital device with Zoom application.
- •Exclusion criteria (care partner or a collateral):
- •Lack of reliable access to a digital device with Zoom application.
Outcomes
Primary Outcomes
Anxiety
Time Frame: 1-2 weeks pre 12-week dance intervention and 1-2 weeks post 12-week dance intervention
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.
Loneliness
Time Frame: 1-2 weeks pre 12-week dance intervention and 1-2 weeks post 12-week dance intervention
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).
Action Research Field Notes
Time Frame: During 12-week dance intervention
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
Wellbeing
Time Frame: 1-2 weeks pre 12-week dance intervention and 1-2 weeks post 12-week dance intervention
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.
Belonging
Time Frame: 1-2 weeks post 12-week dance intervention
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.
Participant Interest, Expectations and Perceived Wellbeing and Belonging
Time Frame: 1-2 weeks pre 12-week dance intervention
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.
Participant Satisfaction and Perceived Impact
Time Frame: 1-2 weeks post 12-week dance intervention
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.
Participant focus group post-dance intervention
Time Frame: Immediately post 12-week 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
Secondary Outcomes
No secondary outcomes reported
Investigators
Magda Kaczmarska
Magdalena Kaczmarska, MFA, Principal Investigator
DanceStream Projects