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.
There is a need to extend the positive benefits of dance (including coordination, mood,
social connection and creative engagement) to PLWD. The Stories in the Moment (SIM) program
engages PLWD through dance, sensory engagement, music and storytelling while centering their
participation as co-creative agents. Stories in the Moment provides tools that can help
participants maintain meaningful engagement, community and connection regardless of their
disease progression. The program uses co-creative dance improvisation practices to help
people explore options of expression and gain comfort and security in the broad range of
resources available to them in their bodies, minds, and voices. Dance is a universal language
which mobilizes our bodies to tell stories in movement. SIM utilizes and extends the benefits
of group dance improvisation to connect meaning and movement to build collective "stories in
the moment". In co- creating these group story-dances, valuing the essential contributions of
each participant regardless of their "ability", SIM supports connection, communication and
the building of creative community with PLWD.
There exists a paucity of understanding of the impact of dance and creative movement on the
wellbeing, sense of belonging and quality of life of people living with dementia.
This pilot project will deliver a creative dance program, Stories in the Moment, to diverse
individuals living with dementia and their care partners residing across the U.S. A delivery
of a mixed-methods evaluation of the novel Stories in the Moment program delivered virtually
will allow for an informed understanding of the perceived impact of the program for people
living with dementia and their care partners and in turn inform the approach to development,
further optimization and scalability of this program.
BACKGROUND ON STORIES IN THE MOMENT DANCE PROGRAM The Stories in the Moment program
approaches implemented in this research study have been successfully prototyped since 2020 in
partnership with local and national organizations and community partners serving diverse
communities of people living with dementia and care partners in the United States. The
Stories in the Moment program was developed and prototyped in partnership with people living
with dementia and their care partners through the Virtual Engagement Program on the Dementia
Action Alliance (DAA) (2021). The curriculum and practical approach were informed by the
20-year experience of the PI as a dance artist and builder of community-based dance programs
for intergenerational groups and older adults. Leveraging this practical experience with a
background in neuropharmacology and a rigorous and systematic review of peer- reviewed
literature on the effects of dance on brain health for healthy older adults and PLWD, shaped
the Stories in the Moment framework and methodology.
SAMPLE SIZE Up to 36 people living with dementia will be selected to join the study. Up to 36
care partners or 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 also
consent to participate in the study will be included.
RESEARCH LOCATION All research activities for this study will take place online through the
Zoom videoconferencing platform. Participants in the virtual dance program will be joining
from multiple locations around the United States from their personal devices and most often
from their homes or places of residence.
PROCEDURES
Prior to the start of the research study, potential participants will meet with the
research coordinator to complete a consent interview.
Pre-dance program intervention questionnaires: (a) basic demographic questionnaire, (b)
WHO-5 scale of wellbeing adapted for people living with dementia, (c) anxiety (Rating
for Anxiety in Dementia-Scheduled Interview designed for evaluators without extensive
clinical training) and (d) loneliness (6-item De Jong Gierveld Loneliness Scale) as well
as a (e) qualitative questionnaire evaluating interest and expectations in joining the
Stories in the Moment program.
The questionnaires will be delivered via a conversation with a researcher over the
telephone or a videoconferencing platform. The pre-intervention questionnaires will take
approximately 20 minutes to complete.
Over the course of three months (12 weeks) of the intervention, study participants will
join once a week for an hour on a videoconference call (Zoom) to engage in the dance
program, Stories in the Moment for a total of 12 sessions.
Participants will be assigned to one of up to 3 virtual classes based on their time zone
and availability for the duration of the 12-week series. During the Stories in the
Moment class session, the activities will alternate between self-created (their own)
movements and activities demonstrated by the teaching artist (to follow). All activities
will be performed seated and are adjusted to provide best practices in progression of
movements for older adults and individuals with limited mobility. As the nature of the
program is co-creative, meaning the participants guide the movements selected,
participants will be invited, at all times, to participate in a way that feels good to
them.
Researchers will track attendance and de-identified field notes of participant responses
and participation as well as teaching artist approaches and adaptations will be
documented.
Immediately following the 12-week intervention of Stories in the Moment, study
participants (people living with dementia and care partners/a collateral who also
consented to participate in the study) will be invited to participate in a focus group.
The focus group will last up to an hour on a videoconference (Zoom) platform. Persons
living with dementia and care partners/collateral will be asked to describe their
experience with the Stories in the Moment program.
Post-dance intervention questionnaires: (a) WHO-5 scale of wellbeing adapted for people
living with dementia, (c) anxiety (Rating for Anxiety in Dementia-Scheduled Interview
designed for evaluators without extensive clinical training) and (d) loneliness (6-item
De Jong Gierveld Loneliness Scale), (d) belonging (Sense of Belonging Scale) as well as
a (e) questionnaire with open ended questions evaluating their perceptions and
reflections in joining the Stories in the Moment program. The questionnaires will be
delivered via a conversation with a researcher over the telephone or a videoconferencing
platform. The post-intervention questionnaires will take approximately 40 minutes to
complete.
Magda Kaczmarska is an Atlantic Fellow for Equity in Brain Health at the Global Brain Health
Institute (GBHI). This research is supported with funding from GBHI, Alzheimer's Association,
and Alzheimer's Society (GBHI ALZ UK-22-865612).