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ThriveTogether!: a dementia-focused, relationship-centered e-learning program
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1
ThriveTogether!: A Dementia-Focused, Relationship-Centered e-Learning Program
Jullie Gray, DSW, MSW, LICSW, CMC
Final Capstone Project
Submitted in Partial Fulfillment of the
Requirements for the Degree
Doctor of Social Work
Suzanne Dworak-Peck School of Social Work
University of Southern California
SOWK 722
Renee Smith-Maddox, PhD, Capstone Chair
August 2021
2
Dedication
The journey through the USC DSW program has been a dream of a lifetime and this
Capstone work is dedicated to my parents, James “Howard” Gray and Sandra Joy Long, and my
husband, John Chao. My father, who passed away in 2017, always believed in my ability to do
anything I set my mind to and was the person who pushed me to go to college. His relentless
desire to have me further my education sent me on a journey that changed the trajectory of my
life. In 2019, three months after I started the USC DSW program, my mother died suddenly and
unexpectedly. Since her death her voice inside me has been a guiding light each step of the way.
My mother never finished high school and neither of my parents went to college. I hope both my
parents are smiling now as they look down upon this work and are saying— “Well done, Jullie,
well done.”
Lastly, I dedicate this work to my beloved husband, John Chao. He continually makes me
laugh, reminds me to stop and rest, and truly believes I was meant to be in this doctoral program.
How lucky am I to have people in my life who believe in me and love me so well? It is because
of their love and support that I dedicate this work to them.
3
Acknowledgements
I want to thank the following people for their guidance and support during my quest to
develop ThriveTogether!. First, my husband, John Chao, who supported and cheered me on
throughout the DSW program. He acted as a sounding board and provided editing support for
every paper, including this one. Second, I’d like to thank the entire Aging Wisdom team for their
support and assistance. Without Aging Wisdom, this Capstone program would not be possible.
Third, I am grateful for the amazing professors at USC who shared their wisdom,
encouragement, and pushed me to be the best version of myself. These professors include my
Capstone Chair and committee members, Renee Smith-Maddox, PhD, MSW; Harry Hunter,
PhD, MSW, MBA; and Juan Carols Araque, PhD. Other professors who have had a profound
impact on me throughout this program include Stephanie Wander, MBA; Sara Schwartz, PhD,
MSW; Eugenia Weiss, PhD, PsyD, MSW; June Wiley, PhD, MSW; Jane James JD, MSW; and
Annalisa Enrile, PhD, MSW.
Finally, I am grateful to the members of Cohort 10, including my study group for the past
two years that included Shantel Garcia, Ramona Merchan, and Indira Henard—they were a
steady source of inspiration, laughter, and provided a safe place to process the work we were
doing. My Capstone study group was another source of encouragement and support—Shantel
Garcia, and Alyssa Lovegrove—thank you ladies for sharing this journey with me. Our entire
cohort rallied together through the COVID-19 pandemic, political upheaval, and a groundswell
of racial reconning and trauma. Cohort members were a constant source of encouragement as we
held fast and urged one another to keep moving forward during these unprecedented times to
help solve some of the world’s biggest problems —The Grand Challenges of Social Work. Fight
on and change the world Cohort 10!
4
Contents
Dedication ....................................................................................................................................... 2
Acknowledgements ......................................................................................................................... 3
ThriveTogether!: A Dementia-Focused, Relationship-Centered e-Learning Program ................... 6
Executive Summary ........................................................................................................................ 6
A Grand Challenge of Social Work: Eradicate Social Isolation ..................................................... 8
Conceptual Framework ................................................................................................................... 9
Problem Statement .......................................................................................................................... 9
Dementia ....................................................................................................................................... 10
Isolation & Loneliness ................................................................................................................... 11
Models Used to Understand, Explain & Care for People with Dementia ..................................... 12
Biomedical Model ................................................................................................................. 12
Person-Centered Care Model ................................................................................................ 13
Theory of Change & Aims ............................................................................................................ 14
Theoretical Framework ................................................................................................................. 16
Problems of Practice & Innovative Solutions ............................................................................... 16
Relationship-Centered Care Framework ....................................................................................... 16
Solution Landscape Analysis: Existing Solutions & Evidenced-Based Approaches ............ 18
Dementia Care e-Learning Interventions .............................................................................. 19
Project Structure, Methodology & Actions ................................................................................... 20
Innovation Development Process .................................................................................................. 20
Stakeholder Analysis ..................................................................................................................... 21
ThriveTogether! e-Learning Program ........................................................................................... 21
Implementation Plan ...................................................................................................................... 23
Implementation: Potential Obstacles & Mitigation Plans ............................................................. 24
Financial Analysis ......................................................................................................................... 25
Market Assessment ................................................................................................................ 25
Financial Plan ........................................................................................................................ 26
5
Scalability & Sustainability ................................................................................................... 27
Marketing & Communication Plan ............................................................................................... 28
Program Evaluation Plan ............................................................................................................... 29
Ethical Considerations & Mitigation Strategies ............................................................................ 31
Conclusion ..................................................................................................................................... 32
References ..................................................................................................................................... 34
Appendix A: Logic Model ............................................................................................................ 49
Appendix B: Review of Evidence Based Practices ....................................................................... 50
Appendix C: Comparative Analysis .............................................................................................. 52
Appendix D: Stakeholder Sectors ................................................................................................. 53
Appendix E: Interview Highlights with Stakeholders ................................................................... 54
Appendix F: Stakeholder Matrix ................................................................................................... 55
Appendix G: Prototype Testing Highlights ................................................................................... 56
Appendix H: Prototype .................................................................................................................. 57
Appendix I: Curriculum Manual ................................................................................................... 60
Appendix J: Gantt Chart ................................................................................................................ 61
Appendix K: Lean Canvas ............................................................................................................ 62
Appendix L: SWOT Analysis ....................................................................................................... 63
Appendix M: Value Proposition for Care Partners ....................................................................... 64
Appendix O: Budget ...................................................................................................................... 67
Appendix P: Evaluation Tools ...................................................................................................... 70
6
ThriveTogether!: A Dementia-Focused, Relationship-Centered e-Learning Program
Executive Summary
Social isolation and loneliness have devastating impacts on people, not only harming their
physical and emotional health, but also leading to premature death (Holt-Lunstad et al., 2010;
National Academies, 2020; Perissinotto et al., 2012). Following is a description of
ThriveTogether!, a relationship-centered e-Learning program offering a new approach to
dementia care that fuels connection between people with dementia and those who support them.
ThriveTogether! dismantles the commonly ascribed dementia tragedy narrative that emphasizes a
person’s loss of ability and identity, building instead a new understanding and offering important
communication and care partnering tools to help families live more joyful, meaningful lives.
Dementia affects over 6.2 million people in the United States, the majority of whom are
over age 65 (Alzheimer’s Association, 2020, 2021). It has many causes, but the most common is
Alzheimer’s disease. Pre-conceived prejudices of ageism and ableism pervade dementia
discourse, driving disconnection and making it difficult to shift destructive attitudes and norms.
Despite negative associations, a diagnosis of dementia invites an exploration about what it means
to be human, the meaning and purpose of one’s life, and how to live well with an acquired
cognitive disability. Dementia should be understood as a social experience that requires
reciprocity—give and take for mutual benefit—and meaningful engagement (Kontos et al., 2017;
Macdonald & Mears, 2019). By affirming the significance of relationships in quality care, support
for those living with dementia can be reimagined (Kontos et al., 2017, 2021).
The theory of change underpinning ThriveTogether! suggests that by equipping family
care partners—comprised of family members, partners, and close friends—with dementia-
specific, relationship-centered skills, people living with dementia and their care partners can build
7
deeper connections. Therefore, the aim is to provide family care partners with the information,
tools, and support they need to be successful in their roles.
ThriveTogether! is a self-directed, on-demand e-Learning program sponsored and funded
by Aging Wisdom, a for-profit care management company in Seattle, Washington. The training
will be delivered over a learning management system (LMS) and accessed remotely from
anywhere in the world with an internet connection. Training methods include: (1) pre-recorded
learning modules; (2) micro lessons targeting common challenges (e.g., bathing, driving,
wandering); (3) an online community forum encouraging the sharing of learning reflections and
promoting connection with other participants; (4) downloadable tools and exercises, including
multi-cultural information and links to translated resources; (5) recommendations for
supplemental learning; (6) knowledge checks to reinforce learning; and (7) live coaching sessions
for individualized training and support. Didactic and pedagogical methods were informed by
interviews with stakeholders as well as a review of the literature describing evidenced-based
teaching practices for dementia care partners.
Program evaluation will include formative (during training) and summative (after training)
learning assessments using Kirkpatrick’s four-level training evaluation method to measure
effectiveness (Kirkpatrick & Kayser-Kirkpatrick, 2016). Data collection will be automated
through the LMS platform. Results will be used to continuously improve ThriveTogether! and
will be disseminated broadly to help loosen society’s harmful embrace of dementia stigma and
fear that is so prevalent today. ThriveTogether! promises to reveal a new understanding of
dementia, seeing beyond cognitive decline, disabilities, and disease to uncover hidden
opportunities to live stronger, healthier, and more connected lives.
8
A Grand Challenge of Social Work: Eradicate Social Isolation
The American Academy of Social Work and Social Welfare developed Grand Challenges
for Social Work (GCSW) to unite the profession around common goals (Lubben et al., 2015).
Social work grand challenges invite students, researchers, and practitioners to develop innovative
solutions for intractable, large-scale social problems. The focus here is on one GCSW,
strengthening society’s social fabric by eradicating social isolation among people living with
dementia (PLWD).
To be isolated and lonely is not only heartbreaking, it hurts much like the physical
sensation of pain (Cacioppo & Hawkley, 2009; Eisenberger et al., 2003). Considered a silent
killer, isolation has been found to be worse for a person’s health than obesity, excessive alcohol
consumption, or smoking 15 cigarettes a day (Holt-Lunstad et al., 2010). Older people are
particularly vulnerable due to many predisposing factors, such as living alone, the loss of
meaningful roles, death or distance of family and friends, and the effects of chronic illnesses and
sensory impairments (National Academies, 2020). The prospect of becoming isolated and lonely
is amplified with the onset of dementia.
Health and social service practitioners, people living with dementia (PLWD), care
partners, activists, academics, allies, and others all around the world have begun questioning the
traditional approach to dementia care, pushing back on societal assumptions that PLWD have no
purpose, meaning, or ability to live full lives. With a sense of moral urgency, in September 2020
they forged a global grassroots alliance, Reimagining Dementia: A Creative Coalition for Justice,
with a goal to innovate dementia care. Spurred on by the devastating toll of the COVID-19
pandemic’s social distancing practices on people living with dementia and their care partners,
membership quickly swelled to over 500 people representing over 23 countries (Reimagining
9
Dementia, 2021b). The aim of the alliance is to challenge negative attitudes about dementia,
reduce stigma, and disseminate best practices in care and public policy (Kontos et al., 2021;
Reimagining Dementia, 2021a). Their specific call to action is a “ … radical transformation of the
very attitudes and conditions that are contributing to the isolation, abuse, and neglect within and
outside of long-term and community-based care settings by means of, for example, the
pathologizing of human experience, and the use of chemical, physical, and environmental
restraints” (Reimagining Dementia, 2021a, p. 1).
ThriveTogether!, an innovative relationship-centered training program, aligns with the
coalition’s call to action by challenging assumptions and advocating for inclusive relational
approaches that support the ongoing growth and development of PLWD and their care partners.
Training promotes interdependence and equips family care partners—family members, partners,
and close friends—with skills that foster meaningful, supportive interactions.
Conceptual Framework
Problem Statement
Generally, family members cultivate relationships with one another and exchange care and
support in a reciprocal manner long before the onset of dementia. The diagnosis of dementia
alters relationships as one person in the dyad gradually takes on caretaking duties, skewing the
balance of reciprocity, roles, and responsibilities. The quality of relationships between care
partners and their loved ones appears linked to both parties’ experiences after diagnosis (Ablitt et
al., 2009). Research shows that family care partners often lack dementia-specific information and
relational skills, and these knowledge deficits diminish relational quality and exacerbate
disconnection (Ablitt et al., 2009; Barnes et al., 2016; Benbow et al., 2019; Macdonald, 2018;
Proctor et al., 2002; Robinson et al., 2014; Werner, 2001).
10
Human relationships are the major source of meaning in life for older people receiving
care, and they are associated with well-being and quality of life (Hupkens et al., 2018).
Unfulfilled needs for meaningful relationships contribute to feeling lonely (Paque et al., 2018).
Social isolation and loneliness are serious problems commonly leading to poor health and
premature death from all causes (National Academies, 2020).
Dementia
Dementia is a growing concern. The vast majority of people diagnosed are age 65 or older,
however, about 9% are younger (Alzheimer’s Association, 2020; World Health Organization,
2020). There are approximately 15 clinical subtypes of dementia but some of them are
exceedingly rare (Hornberger, 2020). The most common cause of dementia is Alzheimer’s disease
(Alzheimer’s Association, 2020). Alzheimer’s disease and related dementias (ADRD) are
considered chronic neurodegenerative disorders that impact a person’s memory, thinking,
behavior, and ability to communicate and perform everyday activities independently.
Today, 6.2 million people in the U.S. live with ADRD, a number that is projected to more
than double by 2050 (Alzheimer’s Association, 2020, 2021). Family care partners are the
cornerstone of long-term care services and supports for people with dementia, helping them delay
and sometimes avoid institutional placement. Unpaid family care partners, predominantly women,
provide 83% of the help needed by older adults—totaling an estimated 18.6 billion hours of care
annually to family members living with dementia (Alzheimer’s Association, 2020). Over half of
unpaid dementia care partners assist a parent or in-law; approximately 10% provide care to a
spouse; and the rest consist of other family members and non-relatives (Alzheimer’s Association,
2020; NAC & AARP, 2020). A concerning trend shows that as baby boomers age, the older adult
population’s care needs will exceed the capacity of family care partners to provide help
11
(Alzheimer’s Association, 2020; National Academies, 2016; Redfoot et al., 2013). This
demographic shift increases pressure on families who are thrust into unfamiliar dementia care
roles.
Isolation & Loneliness
Social isolation and loneliness are distinct but related concepts. Isolation refers to an
objective, measurable state where a person has few contacts in their daily life. Loneliness, on the
other hand, is a subjective feeling of disconnection from others that relates more to the quality
than the quantity of social interactions (Cacioppo & Hawkley, 2009). As previously mentioned,
both isolation and loneliness contribute to worsening health, functional and cognitive decline, and
premature death (Holt-Lunstad, 2017; National Academies, 2020; Perissinotto et al., 2012).
Experiencing loneliness and isolation are common concerns expressed by PLWD (Alzheimer’s
Society, 2017). Researchers primarily evaluate the incidence and effects of isolation and
loneliness on family care partners, not those diagnosed with ADRD. Available evidence indicates
that more than one-third (35%) of PLWD are lonely or at risk for living an isolated life
(Alzheimer’s Society, 2017; Rippon et al., 2019; Victor et al., 2020).
The damaging effects of isolation and loneliness among PLWD have been especially stark
during the COVID-19 pandemic where social distancing practices were imposed on PLWD,
especially those living in long-term care settings, without their consent or enough consideration
about the despair, morbidity, and premature mortality these public health measures would cause
(Altarum, 2020; Aronson, 2020). Stigma, ageism, and racism exacerbated the problem, and
people of color experienced the greatest risks and burdens (APA, 2020; Chatters et al., 2020). A
rapid systematic review of 15 worldwide studies, with a total of 6,442 PLWD living in both the
community and institutional settings, showed lockdown and social distancing practices led to
12
worse cognitive function, exacerbated or prompted new neuropsychiatric symptoms, and
triggered functional decline–setting into motion irreversible harms (Suárez-González et al., 2021).
Another study by Altarum (2020) examined the impact on nursing home residents with similarly
tragic results. One resident participating in the study said, “If the virus doesn’t kill me, the
loneliness will” (p. 9). While PLWD were protected from the virus, their health and well-being
suffered in unimaginable ways, and they were excluded from participating in making their own
choices about whether to prioritize quality or quantity of life (D’cruz & Banerjee, 2020; McGrath,
2020; Reed et al., 2017).
Models Used to Understand, Explain & Care for People with Dementia
The biomedical and person-centered care models are generally used in practice with
PLWD and recommended by the Alzheimer’s Association to educate medical professionals, care
providers, and the public about dementia (Fazio et al., 2018). These approaches may inadvertently
contribute to social disconnection.
Biomedical Model
Ever since Doctor Alois Alzheimer discovered the disease over 100 years ago, the
framework for understanding, treating, and caring for PLWD has largely relied on a biomedical
approach (Maurer et al., 2006). Explanations about ADRD emphasize the steady disintegration of
brain cells, which eventually causes death. Treatment within the biomedical model primarily
consists of medication management for symptoms and institutional containment for those who
manifest “difficult behaviors” or are in later stages of the disease. Care provided is task-centered,
focused on helping PLWD with medical management, activities of daily living, and ensuring their
physical safety.
13
The biomedical approach portrays those with dementia as “fading away” due to the
neurodegenerative nature of the disease. In this model, PLWD are defined by their incapacities
and are stuck alone and disengaged in a departure lounge for up to 20 years waiting to die
(Alzheimer’s Association, 2020; Behuniak, 2011; Herrmann et al., 2018; Low & Purwaningrum,
2020; Swaffer, 2015).
Hutchison et al., (2019) argue that framing dementia in biomedical terms reinforces
disempowerment by emphasizing what little can be done until there is a research breakthrough.
To understand the impact of the biomedical framework, researchers analyzed depictions of
PLWD in popular and medical literature as well as media sources. For example, Behuniak (2011)
used social construction theory to evaluate medical journals, contemporary literature, and the
media’s use of the zombie metaphor for those living with dementia, and concluded that the
biomedical model maintains the notion that a person’s brain is destroyed and is, therefore, the
hopeless embodiment of a living-dead person. Low & Purwaningrum (2020) examined negative
stereotypes, fear, and social distance in a systematic review of popular culture (i.e., literature,
films and television, news, social media, and language). Findings confirmed that portrayals of
dementia are most often negative and biomedically focused using illustrations of exploding heads
or disintegrating brains. These representations are thought to reinforce stigma and contribute to
social disconnection.
Person-Centered Care Model
Thomas Kitwood revolutionized dementia care when he proposed a “person-centered”
care model in the 1990s, using a “personhood” lens to understand those living with dementia
(Kitwood, 1990, 2019). Kitwood defined personhood as “a standing or status that is bestowed
upon one human being, by others, in the context of relationship and social being” (Kitwood, 2019,
14
p. 19). He argued that dementia was not the problem; instead, the problem was the inability of
care partners to accommodate perspectives of PLWD. He urged understanding of the social
context of dementia and promoted the idea of social engagement.
The person-centered approach softened the edges of the biomedical model by promoting
independence and recognizing PLWD as people of value who should be included in their own
care planning (Kitwood, 2019; Macdonald, 2019). Critics, however, argue that person-centered
care is not well-defined and has become a technique of care that undermines relationships,
something it was originally meant to foster (Kontos et al., 2017; Macdonald, 2019). Much of this
criticism comes from the fact that person-centeredness considers the person in isolation from the
context of the relationship in which care occurs (Kontos et al., 2017; Macdonald, 2019; M. R.
Nolan et al., 2004). Macdonald (2019), acknowledged the importance of person-centered care but
criticized Kitwood’s characterization of personhood as something that requires capacity for
rational thought “from a human being as a separate, embodied person” (p. 195). She argued that
with his interpretation, personhood can be lost as ADRD progresses into the advanced stages.
In a systematic review and meta-analysis of person-centered care, Kim & Park (2017)
found that person-centered care reduced agitation, neuropsychiatric symptoms, and depression in
PLWD. Quality of life was positively impacted for those in the earlier stages of disease.
Unfortunately, the effects were mostly short-term (an average of six weeks) and were less
effective for those in the advanced stages. These findings reinforce Macdonald’s (2019) concern
that person-centered care may not address the needs of those in later stages of dementia.
Theory of Change & Aims
Despite the shrinking pool of available family care partners, we are living in a time where
home and community-based services are heralded as the most cost-effective and preferred place
15
for dementia care, yet adequate support for families and the people they care for is sorely lacking
(Peterson et al., 2016; Redfoot et al., 2013; Samus et al., 2018). In fact, over 820,000 people
nationally languish for an average of 39 months on waiting lists for home and community-based
Medicaid services, many of whom will tragically discover they are not eligible when they arrive
at the top of the list (Musumeci et al., 2020). Driven by love, moral obligation, and sometimes the
absence of other viable options, families often flounder financially and emotionally trying to build
a refuge at home. Dementia care partners in particular may find themselves walking a tightrope
with their loved ones between intimacy and alienation, often feeling like strangers as their lives
are changed, bound by their collective need to care and be cared for without a strong safety net or
the skills needed to succeed (Wuest et al., 1994).
The theory of change guiding ThriveTogether! posits that by equipping family care
partners with dementia-specific, relationship-centered skills, people living with dementia and
their care partners can deepen their connections with each other. Through understanding, tools,
and strategies, they can more easily navigate challenges, create compassionate care boundaries,
and successfully adjust to a new way of being in their relationship. Therefore, the aim is to offer
an alternate view of dementia; equip families with the information and skills they need to be
successful in their role; and help them experience the joy of connecting in new and imaginative
ways.
Through investments in technology, staffing, and marketing, Aging Wisdom will deliver
an asynchronous e-Learning program for dementia care partners with live, individualized
coaching services based on a relationship-centered care model. An ongoing evaluation process
will help continuously improve the program. Promising results will be disseminated broadly in a
push to reshape views about dementia with a long-term goal to help transform the way the public,
16
health care professionals, and human service providers understand, explain, and support people
living with dementia. The logic model buttressing the theory of change is shown in Appendix A.
Theoretical Framework
Grounded in existential-humanistic theory and ambiguous loss theory, ThriveTogether!’s
curriculum draws attention to the importance of empathy, presence, and meaning making
(Albinsson & Strang, 2003; Frick, 1987; Kontos et al., 2017). Ambiguous loss is a relational
phenomenon that describes how care partners perceive family members living with dementia as
physically present but psychologically absent (here but not here), which can deepen disconnection
and cause lingering grief and uncertainty about who is actively in or out of the family system
(Boss, 2016). In keeping with these theories, the ThriveTogether! program recognizes that PLWD
and their care partners need to find purpose in their lives, and that relationships are built on a
foundation of mutual respect and require reciprocity, presence, and an appreciation of the vast
potential in each person (Morhardt & Spira, 2013; Suri, 2010). Ambiguous loss is addressed by
naming it, fostering resilience, building insight, and helping care partners find meaning in their
lived experience (Boss, 2016).
Problems of Practice & Innovative Solutions
Relationship-Centered Care Framework
Relationship-centered care (RCC) appears to have been first described in 1994 by the
Pew-Fetzer Task Force on Advancing Psychosocial Health Education (Tresolini & The Pew-
Fetzer Task Force, 1994). The report acknowledged the importance of relationships in therapeutic
and healing activities, as well as being an undeniable factor in patient satisfaction and ensuring
positive outcomes in health care. This report coincided with the development of Kitwood’s
person-centered care model and the much less well-known Senses Framework, which promoted
17
relationship-centered care practices by encouraging those involved in caring for people with
dementia to foster a sense of (1) security, (2) belonging, (3) continuity, (4) purpose, (5)
achievement, and (6) significance in the relationship (Keady & Nolan, 2020).
As time went on, person-centered care gained popularity and was incorporated into
professional training and practice with older and disabled individuals, while RCC took a back
seat. Over the years, the Senses Framework has been applied in some nursing education
programs, as well as long-term care and acute care settings in the United Kingdom but does not
appear to have been applied yet to family care partner training or formally used in the U.S. in
acute, long-term, or home-based care. Furthermore, relationship-centered care is not mentioned in
the Alzheimer’s Association’s Dementia Care Practice Recommendations, which primarily focus
on person-centered practice and biomedical aspects of dementia (Fazio et al., 2018).
Morhardt and Spira (2013, p. 40) emphasize that a relational approach to care creates a
paradigm shift away from individualism to a “dyadic, triadic, and multi-person framework of
care.” Several scholars argue that compared to the person-centered model, RCC more fully
appreciates interdependencies and reciprocity that strengthen relationships (Kontos et al., 2017;
Macdonald, 2019; Morhardt & Spira, 2013; M. Nolan et al., 2002). However, there remain
unanswered questions about if and how to incorporate the use of interpersonal and professional
boundaries in the relational care model (Abrams et al., 2019; Allison et al., 2019). Care partnering
presents many conflicting responsibilities and loyalties that often require the sacrifice of one’s
own needs to meet the needs of another (Holstein & Mitzen, 2001). And even though some
scholars debate the role of boundaries in RCC, care partners identify boundaries and self-care as
areas where they struggle most, so this is a crucial issue to address in practice (Anderson et al.,
2019; Simpson & Acton, 2013).
18
Taking a dyadic perspective, Rippon et al., (2020) examined the quality of relationships
between PLWD and their informal care partners observing that the quality of caregiving
relationships is an important aspect of life satisfaction and well-being. Allison et al., (2019)
evaluated the use of RCC in a dementia special care unit where residents were non-verbal and in
the end-stage of dementia. Results suggested it was possible to foster mutually reinforcing,
caring, and positive interactions by attending to residents’ cultural identities, such as speaking to
them in their native language, engaging in religious rituals, and connecting through non-verbal
interaction, such as reminiscence, play, drama, and music (Allison et al., 2019).
Relationship-centered care is aligned with the growing dementia culture change
movement and extends the person-centered care model by providing a more inclusive view (de
Witt & Fortune, 2017; Kontos et al., 2021; Reed et al., 2017; Ryan et al., 2008). As an emerging
model of practice, there is little, if any, quantitative research indicating how widely RCC has been
adopted, how training is structured and incorporated into practice when it is used, or the impact
on PLWD and their care partners. Nevertheless, qualitative studies have demonstrated that RCC
positively impacts PLWD and their care partners (Clarke et al., 2020; de Witt & Fortune, 2017;
Kontos et al., 2017; Tranvåg et al., 2015; Watson, 2019).
Solution Landscape Analysis: Existing Solutions & Evidenced-Based Approaches
Interventions used to support family care partners are diverse and include the use of
training workshops, individual and family counseling, skills training, multi-component programs,
support groups, and technological interventions, to name a few (Toseland, 2004). There appear to
be no standard interventions, although educational programs tend to show more promising results
by increasing knowledge, competencies, and the well-being of caregivers (Sousa et al., 2016).
19
After an extensive review of scholarly literature and internet searches, no training
programs were found that offer RCC instruction to care partners through either in-person
workshops or remote learning. In fact, a Google search for “relationship-centered dementia care
training programs” only produced academic articles about the subject of RCC and a multitude of
training programs offering the person-centered care approach.
Dementia Care e-Learning Interventions
In 2008, Massive Open Online Courses (MOOCs) began providing free internet-based
learning programs to promote inclusive, equitable learning opportunities (Eccleston et al., 2019;
Goldberg et al., 2015). Skeptics of MOOCs criticize the low completion rates, typically between
5–10 %, and the enormous number of enrolled students, making effective teaching difficult
(Goldberg et al., 2015). Since its inception, over 200,000 people from around the world have
enrolled in a MOOC training called Understanding Dementia (UD MOOC) (Wicking Dementia
Research & Education Center, n.d.). From 2016–2017, completion rates for UD MOOC were
42% of enrolled participants, higher than the average for other MOOC courses (Eccleston et al.,
2019). The program is divided into three modules covering: (1) the brain, (2) the disease, and (3)
the person and progression of the disease. New participants are admitted at specified times
throughout the year, and the 21 hours of content are dripped out over nine weeks. Those who
completed the training showed improvement in their level of dementia knowledge (Eccleston et
al., 2019; Goldberg et al., 2015). However, the UD MOOC only applies a biomedical framework,
it oozes content over many weeks, and requires significant time commitment to complete it.
These aspects of the program may negatively impact completion rates. Even so, UD MOOC
demonstrates there is robust worldwide interest in dementia e-Learning.
20
Other dementia-focused e-Learning programs have emerged and almost always apply
aspects of the biomedical or person-centered approach either together or separately. Systematic
reviews highlight the wide variability in research quality of these programs and note there are a
limited number of randomized controlled trials measuring training effectiveness (Appendix B).
Didactic methods differ and include both in-person and remote learning. Lessons are designed to
increase dementia knowledge, understanding, communication skills, and provide support for
caregivers. Moehead and colleagues (2020) conducted a systematic review to determine key
features of effective dementia-focused e-learning programs. They discovered the most valuable
design features were the use of plain language, easy-to-use interface, and the ability of
participants to communicate with professionals, all of which are central elements of
ThriveTogether!. A comparative analysis of training programs is provided in Appendix C.
Project Structure, Methodology & Actions
Innovation Development Process
ThriveTogether! was developed using design thinking—a non-linear, iterative
development process that involves five phases: (1) empathize by researching users’ needs to
better understand the problem; (2) define the problem by accumulating information through
interviews, observations, and the literature; (3) ideate by generating ideas and examining
alternative ways to view the problem; (4) prototype and experiment with possible solutions; and
(5) test by trying out ideas and making adjustments based on feedback (Liedtka, 2015; Liedtka &
Ogilvie, 2011). To develop ThriveTogether!, 35 interviews were completed with stakeholders,
two focus groups were convened to review existing gaps and solutions, and finally, the prototype
and a curriculum manual were developed and tested (Appendices D & E).
21
Stakeholder Analysis
The primary stakeholder groups identified for ThriveTogether! include care partners,
people living with dementia, health and human service professionals, and a wide variety of
referral sources. Stakeholders were invited to participate at different times during the
development process. These stakeholders had varying degrees of impact, influence, interests, and
preferences for the program. Training needs were identified through a combination of interviews,
focus groups, and a review of the literature. Some stakeholders participated in testing the
prototype and curriculum and will continue to be engaged as valuable members of the design
process. Ongoing engagement will take the form of program updates and review of evaluation
outcomes, and most will be asked to help spread the word about the program when it launches. A
stakeholder analysis matrix is provided in Appendix F.
Interviews with stakeholders highlighted the need for accessible dementia information to
be available in bite-sized pieces to care partners. Suggestions were that training should
accommodate busy schedules and be on-demand, with some ability to customize the training to
address individual needs. Additionally, recommendations were made to ensure cultural
responsiveness and provide a variety of interactive activities to address different learning styles
and interests. The prototype and curriculum were tested with six care partner reviewers, one
expert in dementia care, and one expert in e-Learning instructional design practices (Appendices
G, H, & I). Feedback was overwhelmingly positive.
ThriveTogether! e-Learning Program
ThriveTogether! is a self-directed, on-demand, multimodal, e-Learning program offering
dementia-specific relational skills instruction for family care partners. Training will be delivered
over a learning management system (LMS), and the program will be offered through Aging
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Wisdom, a Seattle based for-profit company. Participants will access ThriveTogether! through the
company’s website via an Aging Wisdom University training portal accessible by tablets,
smartphones, and personal computers from anywhere in the world with an internet connection.
Instructional methods include: (1) approximately four hours of scaffolding pre-recorded video
modules; (2) micro lessons targeting common challenges (e.g., bathing, driving, wandering) that
are available at any time and run three–five minutes in length; (3) an online community forum to
encourage the sharing of learning reflections, promote connection with other participants, and
allow for interaction with the training moderator; (4) downloadable tools and exercises, including
multi-cultural information and links to translated resources; (5) recommendations for
supplemental learning; (6) knowledge checks to reinforce learning; and (7) live coaching sessions
for individualized training and support. Didactic and pedagogical methods were informed through
the design process and literature review.
The curriculum covers the following topics: (1) understanding dementia through different
lenses and care models; (2) discussion about how and why relationships change when dementia is
diagnosed, including information about how to strengthen relationships; (3) review of loneliness
and isolation among people living with dementia and their care partners, with strategies to avoid
disconnection; (4) instruction about how to promote strong relationships using the Senses
Framework; (5) information and exercises to build care partner relational skills through the use of
beautiful questions (a technique supporting creative connection developed by Dr. Anne Basting),
arts engagement, music, improv “yes, and …” techniques, and the use of validation techniques (a
method of communication established by Naomi Feil); and, (6) creating boundaries and self-care
plans by learning to skillfully engage as a care partner to avoid burnout and compassion fatigue.
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ThriveTogether! is a sustaining innovation because it improves existing pedagogy by
moving away from the traditionally applied biomedical and person-centered care models by
shifting to a more inclusive relationship-centered model.
Implementation Plan
Implementation is currently underway with an anticipated launch date in the third quarter
of 2021. Team members include the program designer who is a principal of Aging Wisdom, the
company’s director of marketing and communications (MARCOM), and two outside consultants;
one to provide guidance for the e-Learning technology/web interface and the other to provide
expertise in e-Learning instructional design best practices. A Gantt chart (Appendix J) provides
the program staging timeline.
The LMS platform will be configured by the technology consultant and linked with the
company’s customer relationship management (CRM) system to help automate marketing
activities. Then, a training portal will be configured on the company website allowing easy access
for care partners to purchase and view the content. Enrollment and credit card payments will be
managed within the LMS system.
Training scripts will be developed using the curriculum manual as a guide (Appendix I).
The e-Learning instructional design consultant has been involved in the instructional material
development process. Videos will be pre-recorded by an Aging Wisdom certified care manager,
edited by the company’s audio/visual engineer, and uploaded to the LMS platform.
At least two of Aging Wisdom’s certified care managers experienced in relationship-
centered care will be trained by the program designer to act as moderators and coaches for the
program. Additional care management staff will be added on an as needed basis as the program
grows. Before taking on moderating and coaching roles, care managers will receive an additional
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one-hour in person training session about the methods and goals of the program. Separately, they
will review the training curriculum manual and each learning module, and then successfully
explain back their understanding of the methods and goals of the entire program. Finally, the care
managers will participate in a one-hour LMS platform training session with the technology
consultant. Once competency with the LMS platform has been established, moderators will spend
one week shadowing the program designer or designee during live Zoom coaching sessions with
ThriveTogether! participants to build confidence in the moderators’ skills.
Program fidelity will be monitored during biweekly supervisory reviews of the recorded
live coaching sessions and monthly supervisory meetings. Additionally, the community forum
and evaluation reports generated by the LMS system will be reviewed at least once daily by the
program designer or designee to monitor learner assessments, reactions, comments, progress, and
the module completion rates. Issues and comments listed on evaluation tools and the community
forum will be responded to by the moderator within 24 hours of posting.
Implementation: Potential Obstacles & Mitigation Plans
Three possible obstacles have been identified during the implementation process. These
include the potential for technological problems, Aging Wisdom’s inexperience delivering e-
Learning services, and the need to gain traction to draw enough participants to make the program
financially viable and scalable. First, to address technological challenges, an information
technology consultant has been retained. The consultant has expertise in LMS platforms and
currently acts as Aging Wisdom’s webmaster. Second, delivering quality e-Learning products to
clients takes experience and a specific skill set. Therefore, the e-Learning instructional design
consultant has been providing guidance about content development, promotional tactics, and will
provide advice about how to improve the program if it is underperforming. Finally, a successful
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and scalable program requires creating a targeted marketing plan suitable for e-Learning
programs. The technology consultant, instructional designer, and Aging Wisdom’s MARCOM
director will collaborate with the program designer to develop marketing strategies and will make
adjustments as needed. A marketing dashboard will be created and reviewed weekly by the
program developer to monitor for problems so that modifications can be made quickly if
strategies are not working. Identified problems are not expected to be insurmountable and can be
appropriately mitigated with the assistance of knowledgeable, experienced independent
consultants.
If the program fails to gain traction, a comprehensive review of user feedback,
instructional methods, and the marketing plan will be initiated. Based on program evaluation data,
alternative strategies will be considered. Strategies to address problems may include, but are not
limited to, changing the LMS platform to ensure it is adequately user friendly; adjusting lesson
plans and the instructional design material to better meet user needs and expectations;
reevaluating pricing structures; evaluating if alternative didactic methods are warranted; revising
the marketing plan to better achieve sales goals; and finally, providing reminders, incentives, and
encouragement to complete the training modules and evaluation tools.
Financial Analysis
Market Assessment
Use of the internet is largely ubiquitous. Only 7% of U.S. adults and 25% of people age 65
and older do not use the internet, according to a 2021 study by Pew Research (Perrin & Atske,
2021). Of those who are not online, educational attainment of high school or less and household
income of less than $30,000 are factors hindering access. Older adults are becoming more internet
26
savvy at a rapid pace. For example, 14% of people age 65 and older were internet users in 2000
compared to 73% in 2019 (Pew Research, 2019).
Dementia care is one of the most time-consuming and expensive health conditions to
manage, making e-Learning a practical option for care partners who may have limited resources
and are often unable to leave work or their family member alone to attend training (PRB, 2016).
Additionally, the coronavirus pandemic has been a catalyst for improving the general population’s
digital skills (European Commission, 2020; OECD, 2020). These trends help to establish remote
training as a viable and practical approach to address care partner informational needs.
A business evaluation was completed, including creating a Lean Canvas business plan to
describe the program succinctly (Appendix K); an analysis of the program’s strengths,
weaknesses, opportunities, and threats (SWOT) (Appendix L); and an exploration of the value
proposition (Appendix M). These tools helped define goals and analyze market conditions.
Financial Plan
Aging Wisdom will fund and staff ThriveTogether!. Expenses for the program will be
allocated from the overall Aging Wisdom budget. The startup budget and first full year of
operations (FFYO) budget with notes to financials are provided in Appendix N. Staffing and
business structures required for the success of the program are already in place.
In the startup year, the goal is to serve 700 learners and double sales the following year.
Course fees are competitive with similar person-centered care training programs surveyed across
the country. For budgetary purposes, live coaching revenue was conservatively estimated at one
hour for 25% of enrolled participants. ThriveTogether! is expected to break even in the startup
year and be profitable in the FFYO. If sales goals are not initially achieved, Aging Wisdom can
financially sustain the program for at least the next five years until it gains traction.
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Scalability & Sustainability
At first, participants are expected to be drawn from the Seattle Metro area due to Aging
Wisdom’s strong brand presence and referral network there. But because there are no geographic
or time boundaries to limit access, this program can expand its reach nationally and even
internationally. ThriveTogether! aligns with calls from dementia care professionals globally to
move away from the medical model and its tragedy narrative to a more hopeful and collaborative
relational care approach (Benbow et al., 2019; de Witt & Fortune, 2017; Kontos, 2004;
Macdonald, 2018; Macdonald & Mears, 2019).
To scale beyond the family care partner market, ThriveTogether!’s pedagogy can be
modified and delivered to direct care workers and health and social service professionals, thus
enhancing the program’s ability to penetrate the health care, long-term care, and home and
community-based service sectors. A future phase of the program will be triggered by growth
beyond Aging Wisdom’s ability to staff the program. This stage will involve the creation of
licensing agreements with health and human service organizations to host the program. These
agreements will expand reach beyond the for-profit model. For example, non-profit organizations
can offer ThriveTogether! to communities they serve who may not otherwise be able to afford the
program, or to diverse communities who would benefit from coaches with intimate understanding
of users’ cultural needs, preferences, and dynamics, and can offer coaching in other languages
besides English. Licensing the program will mean duplicating the Aging Wisdom plan to
maintain program fidelity. This will be accomplished through train the trainer programs to ensure
that effective coaching, moderating, and program evaluation services are provided.
Aging Wisdom has been in business for nearly 20 years and enjoys a proven record of
leadership, successful financial stewardship, business growth, and high-quality services. The
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company has financial resources to fund and staff the program, making ThriveTogether! a
sustainable endeavor for the foreseeable future.
Marketing & Communication Plan
Marketing will be targeted to both care partners and potential referral sources to build
awareness. Information about the impact of isolation and loneliness will be shared, including
engaging, poignant messages of hope designed to counteract common stigmatizing beliefs.
Examples of the agency’s logos and consumer focused infographics are found in Appendix O.
Marketing products will be posted on the company’s social media platforms and shared with
referral partners. Paid Google and Facebook ads will be used in tandem with a direct email
marketing campaign to promote the program. A link to a complimentary mini-training session
will be offered as a magnet to generate leads and create interest. Other incentives will also be
used, such as offers for complimentary podcasts, blogs, and downloadable tools for care partners.
Outcomes will be tracked using the Aging Wisdom marketing dashboard, which lists monthly
sales goals, actual sales, website traffic, social media impressions, information generated by
Google analytics, and click-through rates on Facebook and Google advertisements.
Existing community and professional partnerships will support Aging Wisdom’s
marketing and communication efforts. These partnerships also lend credibility to
ThriveTogether!’s RCC change movement. For example, Aging Wisdom’s leaders have been
actively involved in Washington state’s Dementia Action Collaborative (DAC) since its inception
in 2016. Washington’s governor convened the DAC to guide the state’s effort to better support
the increasing number of people living with dementia (WA ALTSA, 2021). As a public-private
partnership, the DAC draws members from around the state in various sectors, such as
government, non-profit, and for-profit organizations. Members are committed to finding and
29
promoting innovative ways to support PLWD and their care partners through programs,
education, and public policy. Besides the DAC, Aging Wisdom’s leadership team is actively
involved in organizations with national and international reach, such as the Women’s President
Organization (a global women’s business leadership and networking group), Aging Life Care
Association (a national membership organization for care managers), the National Academy of
Certified Care Managers (a national credentialing organization for care managers), and the newly
formed Reimagining Dementia: A Creative Coalition for Justice, among others. These channels
can be leveraged for effective networking, marketing, and advocacy opportunities.
Program Evaluation Plan
The program evaluation will help determine if ThriveTogether! delivered effective,
satisfactory training to a wide range of family care partners. It will establish the degree to which
learners applied information, and their perceptions of the value, relevance, and effectiveness of
the program. Using an equity lens, the training evaluation will also help provide insights about the
cultural appropriateness and validity of the program among diverse participants (CEI, 2018;
Dean-Coffey, 2018). Results will be used to continuously improve the program.
The primary goal of ThriveTogether! is to improve relational quality between people with
dementia and their care partners by increasing knowledge and comfort with dementia-specific
relational skills. This will be measured by the participant’s self-assessment about the impact of
the training. The objective is to see at minimum a small improvement in relational quality.
Additionally, the evaluation will measure the level of learning, reaction to training, and the degree
to which training was applied in practice. The objective is for 85% of participants who complete
the program to answer in the affirmative that they had a positive experience, that learning
occurred, and that the methods taught were successfully applied.
30
In addition to collecting demographic information (e.g., gender, race) and process
measures (e.g., module completion rates), Kirkpatrick’s four levels of training evaluation will
guide the evaluation process (Kirkpatrick & Kayser-Kirkpatrick, 2016; Moehead et al., 2020).
This method is frequently cited in the literature as a useful approach to assess training program
effectiveness. Evaluation levels include measuring: (1) reaction—the degree to which the training
is favorable and engaging to learners; (2) learning—the degree to which participants acquired the
intended knowledge, skills, attitudes, confidence, and commitment; (3) behavior—the degree to
which participants apply what they learned; and (4) results—the degree to which targeted
outcomes occur as a result of the training (Kirkpatrick & Kayser-Kirkpatrick, 2016).
Formative (during training) evaluations will be administered after each module and consist
of knowledge checks, questions about the learner’s response to training, and the likelihood of any
barriers that will prevent the application of lessons in each module. Formative evaluations provide
rapid feedback about the training program, reinforce learning, and provide opportunities for self-
reflection. The training moderator will respond to feedback and help participants discover ways to
overcome perceived barriers if they are identified.
Summative (after training) evaluations will measure the perceived impact of the program
on participants and their satisfaction with the training. Impact assessments will focus on
relationship quality, the behaviors used to achieve results, and the overall impact. Finally,
participants will be asked to rate program features and their satisfaction with the general program.
Short, easy to use formative and summative evaluation tools (Appendices I & P) will be
administered, scored, and reported automatically through the LMS platform. Information
collected will contain both quantitative and qualitative information. Evaluation reports will be
reviewed by the program designer or designee at least once daily. The training moderator’s
31
responses to learner comments and questions will be provided within 24 hours after their
submission. Participants may be provided with incentives to complete the evaluation tools if
response rates are sluggish. These incentives may include discounts on other Aging Wisdom
training programs or the ability to download eBooks or other useful tools.
To understand the outcomes achieved, perspectives will continue to be sought from
members of diverse communities who will be asked to review and comment on the evaluation
plan and outcomes. This process will allow stakeholders to provide feedback and suggestions for
improving the cultural responsiveness of the program, the evaluation process, and help interpret
results using a diversity, equity, and inclusion lens (CEI, 2018; Dean-Coffey, 2018). This step
aligns with the goal to continuously enhance program effectiveness and meet diverse needs.
Ethical Considerations & Mitigation Strategies
E-Learning provides unique ethical challenges. Three potential ethical issues and
corresponding mitigation steps have been identified for ThriveTogether!. First, even though on-
line courses can erase cost and time boundaries for learning, participants may feel more isolated
as they work through lessons independently (Toprak et al., 2010). ThriveTogether! addresses this
problem in two ways. First, by assigning a moderator to monitor posts on the social forum and
address participants’ comments, questions, and concerns quickly. Second, by providing access to
live coaching sessions for those who need individualized support and attention.
Another ethical quandary is the potential to unintentionally exclude people in need from
participation. For example, some families lack access to the internet and digital devices, making it
impossible for them to take part in remote training. These individuals are more likely to have
lower educational attainment and fewer financial resources (Perrin & Atske, 2021). Therefore,
those who struggle to access Thrive Together! may need the information most. Mitigation will
32
occur in three ways by: (1) encouraging the use of free computer and internet services, such as
those offered in local libraries, (2) offering discounted fees and full scholarships to learners who
need access, once the program is profitable, and (3) through ThriveTogether!’s scaling plan that
will license the program to non-profit and health care organizations serving low-income and
marginalized communities.
The third ethical issue has potential to occur on the community forum. Well-meaning but
insensitive participants or even trolls (people who are not well-meaning) may post hurtful
messages directed at other participants. This issue will be addressed by clearly posting a
netiquette statement on the forum that explains rules of engagement and the need for courteous
discourse. Additionally, training moderators will frequently monitor the community forum,
quickly address issues if they arise (including, but not limited to censoring posts), and will reach
out to participants affected by negative comments to provide support and help.
Conclusion
Dementia—the word, the idea, the diagnosis—strikes fear like no other disease, except
maybe cancer. Today, the cure is elusive, even after over a century of research. It is best known as
a brain disease that tragically robs people of their identity and leaves them empty shells with little
ability or value. That pervasive understanding of dementia in is an injurious stigma. It cuts off
connection. Possibilities. Hope. Little by little a person’s dignity is stripped away. Isolation,
loneliness, and fear are all that remain. This must not become the enduring legacy of dementia, a
condition that affects more than 50 million people globally—a number that will more than triple
by 2050 (ADI, 2021).
Dementia is not the tragedy—the tragedy is in the way it is framed, explained, understood,
and managed. Many indigenous people view dementia as a process of coming full circle—
33
returning to the creator—a normal and accepted part of life imbued at times with visions that
draw one closer to the spiritual world (Jacklin, 2019; Jacklin & Walker, 2019). Native wisdom
provides another insight.
Through a different, more hopeful, and inclusive lens, ThriveTogether! is ready to present
dementia as an opportunity to explore areas of humanness that are often profoundly neglected—to
live in the moment, to make sense in different ways, and find meaning through creative arts and
music. It will help care partners see—really see the whole person and teach them to respond
differently than before.
Relationship-centered care is not a new technique of care, it is a new way of thinking
about what it means to be in relationship (Macdonald, 2019). It holds the potential to transform
the way dementia is framed by bringing families together, dislodging destructive stigma and
norms, and helping them care and live well together on life’s continued journey.
Long-term goals to change societal beliefs, behaviors, and standards of care around
dementia are ambitious, but they dovetail with a growing global movement that recognizes the
need for a more humanizing and collaborative approach to care. Relationship-centered care holds
promise for a new way forward for millions of people and their families living with dementia. But
ongoing evaluation is needed to confirm its efficacy and its cultural responsiveness for diverse
communities. If results are positive and the program is profitable, it can expand reach and access.
Memory and cognition are only part of what makes a person; if they are slipping away,
there is still much more to be found. Sometimes one’s greatest strengths are to live in the moment,
to create new stories, to explore, and to laugh. For those with dementia, these abilities are not lost.
There may never be a cure for dementia. In the meantime, there is connection–ThriveTogether!.
34
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Appendix A
Logic Model
Inputs Outputs Outcomes
Staff time and expertise
Funding
Technology
Marketing
Referral partnerships
Training
Live coaching
Evaluation
Dissemination of findings
Short/Medium-Term:
Dementia relational knowledge and skills
Relational quality among people with
dementia and their care partners
Long-term:
Stigma and change dementia care norms to
relationship-centered model of care
Assumptions External Factors
• Care partners desire training to increase knowledge & skills.
• Marketing and referral partnerships will be effective.
• The program will meet the needs of diverse participants.
• Care partners will successfully complete the program.
• Outcomes will be achieved.
• Participants’ lack of technology & internet access.
• Economic factors that impact care partners’
priorities.
• Business & economic environment changes.
50
Appendix B
Review of Evidenced Based Practices: Approaches to Dementia Care Training & Training Needs of Care Partners
Authors Title Didactic Methods Findings
(Eggenberger et al.,
2013)
Communication skills training
in dementia care: A systematic
review of effectiveness,
training content and didactic
methods in different settings
In-person workshops Caregiver communication skills training significantly improves QOL for
PLWD
• Content: verbal skills, non-verbal and emotional skills, behaviour
management skills, usage of tools, self-individual experiences,
theoretical knowledge
• Features: self-evaluation tools, gamification, certificate of completion,
feedback to participants, ongoing support, participant self-monitoring,
supervision for employees, use of diary for family caregivers
(Hattink et al., 2015)
Web-based STAR e-learning
course increases empathy and
understanding in dementia
caregivers: Results from a
randomized controlled trial in
the Netherlands and the United
Kingdom
e-Learning E-learning provided significant positive effects on caregiver attitudes and
empathy. Features of training:
• Personalized learning paths
• Online communities
• User friendly training modules
• Psychoeducational and psychotherapeutic approaches were powerful
methods of improving QOL for PLWD
(Klimova et al., 2019)
E-learning as a valuable
caregivers’ support for people
with dementia: A systematic
review
e-Learning E-learning is a promising method of training.
• Provide personalized, self-directed training
• Offer realistic activities/tasks
• Incorporate diverse teaching methods
(Passalacqua &
Harwood, 2012)
VIPS communication skills
training for paraprofessional
dementia caregivers: An
intervention to increase person-
centered dementia care
In-person workshops Person-centered communication skills training for paraprofessionals
reduced caregiver depersonalization and increased empathy and hope for
PLWD. The VIPS model includes person-centered training about:
• Valuing people including using respectful communication skills
• Individualized care—tailoring care to the PLWD
• Personal perspectives—seeing the world from the PLWD’s perspective
• Social environment—encouraging independence and engagement of
PLWD
51
Authors Title Didactic Methods Findings
(Surr et al., 2017) Effective dementia education
and training for the health &
social care workforce: A
systematic review
In-person workshops
and e-Learning
Effective training features include:
• Skilled trainer/facilitator
• Trainee-centered
• Tailored training to individual/group needs
• Combine individual learning with face-to-face discussions
• Multi-media
• Clear, concise, easy to follow, informative and unambiguous,
straightforward language in all learning material
• Learners encouraged to ask questions
• Address learner’s concerns quickly
(Teles et al., 2020) Dementia caregivers training
needs and preferences for
online interventions: A mixed-
methods study
N/A Participants identified training needs related to care interactions to
facilitate good quality care for PLWD.
Training needs included:
• Learning practical aspects of care
• Effective communication and relational skills training
• Managing psychological and behavioral symptoms of dementia
• Caring for oneself
• Information about laws and regulations
The most valued design features included:
• Use of plain language
• Easy to platform/interface
• Communication with professionals
52
Appendix C
Comparative Analysis – Dementia Care Training Programs
Family Care Partner
Dementia Care
Training Features
Thrive
Together!
National
Alzheimer’s
Association
Family
Caregiver
Alliance
Wise
Caregiving
MOOC
Understanding
Dementia
TimeSlips Teepa Snow
Positive
Approach to
Caregiving
e-Learning option
Yes
Yes Yes Yes Yes Yes Yes
Relationship-Centered
Yes
Limited Limited
Ambiguous Loss
Yes
Social Isolation &
Loneliness
Yes
Care Partner Boundaries
Yes
Yes
Multicultural Information
Yes
Minimal
Micro Lessons
Yes
Social Forum
Yes
Yes
Live Coaching
Yes
Yes
53
Appendix D
Stakeholder Sectors
Stakeholders were recruited from a wide variety of sectors to participate in interviews during
various stages of the program design process. Thirty-five stakeholders were interviewed and
represented multiple areas/sectors/constituents. For example, an Asian care partner also provided
ombudsman services and was a member of a community board; an elected official was a licensed
health care provider; a person with dementia also participated on a community board; an expert in
dementia care was an academic and a member of the LGBT community.
1. Academics
2. Adult protective services
3. Aging and long-term care services
4. Aging Wisdom principal and staff
5. Alzheimer’s/dementia education
providers
6. Chaplaincy
7. Community board members
8. Community members
9. Constituents representing Asian,
Black, Latinx, and LGBT
communities
10. County library older adult specialist
11. Dementia care experts
12. Direct care workforce representatives
13. e-Learning instructional designer
14. Elected official
15. Family care partners
16. Fire department
17. Health care professionals
18. Home and community-based service
providers
19. Long-term care ombudsman
20. Older adults
21. Person living with dementia
22. Professional guardian
23. Senior center / adult day center staff
24. Social service providers
25. Technology consultants
54
Appendix E
Interview Highlights with Stakeholders, Users & Beneficiaries: 2019–2021
In 35 interviews, stakeholders, users, and beneficiaries provided comments about how
training should be designed for family care partners (* indicates multiple comments by various
stakeholders):
Training Structure Suggestions
• The training should be on-demand, short with helpful tips on how to engage.*
• Need to provide a customized approach for care partners.
• Training should be both fun and practical.*
• Training should be accessible, engaging, and build skills in each lesson through each
module.*
• Use an app to support inspirational messages to caregivers.
• Provide lessons and exercises that accommodate a variety of learning styles. Some people
need devotionals, coloring, meditation, journaling activities, or tips of the day. *
Training Content Suggestions
• Empower family caregivers.*
• Focus on relationship skills* (active listening, communication, presence, empathy).
• Communication skills are important–need to teach care partners how to respond when the
person is not grounded in reality–do not to argue/reason with the person.*
• Highlight the person with dementia’s strengths and need for engagement.
• Create a sense of wonder among care partners. Help them understand that the person with
dementia needs a purpose in life, meaningful engagement, and a high quality of life.*
• Address issues of boredom among people with dementia. Train care partners to support
more connection.*
• Training should reflect diversity and be culturally responsive.*
• Need to train care partners about the importance of adapting activities for different
dementia stages.
• Care partners need to know how to identify their family member’s unmet needs.*
• Care partners need to learn to “hold space” for the person with dementia and demonstrate
empathy, respect, compassion, presence.*
• Care partners need to learn not to take things personally.*
• Address the cultural norm of independence which is prioritized at the expense of
interdependence.*
• Address stigma, ageism, and isolation.*
55
Appendix F
ThriveTogether! Stakeholder Analysis Matrix
Stakeholder
Group
Impact
How much does the
project impact them?
(Low, Medium, High)
Influence
How much influence do
they have over project?
(Low, Medium, High)
What is
important to
stakeholder?
How could the
stakeholder
contribute to
project?
How could
stakeholder
block project?
Strategy for
engaging the
stakeholder
Aging Wisdom
Leaderships
High High Quality, effective
service, profitability,
fits mission, vision,
values of company
Funding, staffing,
marketing, evaluation,
ongoing support
Withdraw support:
funding, staffing,
etc.
Ongoing
communication,
review evaluation,
financial and
marketing reports
Care Partners
High High Sense of support,
accessibility,
addresses problems,
cost, ease of use
Feedback, learning
launch, training, refer
others
Withdraw support Ongoing outreach,
marketing, program
updates, social media,
blogs, podcasts
People with
Dementia
High Moderate Quality relationships,
quality of life, respect
Feedback Unable to block Offer opportunities for
communication &
feedback
Health & Social
Service Providers
High Moderate Reduced
biopsychosocial
problems in people
w/dementia and care
partners
Feedback, learning
launch, testing
aspects, referrals,
magnify marketing
messages
Unable to block but
could reduce
referrals if unhappy
with outcomes
Ongoing
communication,
marketing,
dissemination of
program eval results
Referral
Partners
Moderate-Low Moderate - Low Effective training for
clients/patients/
community members
Feedback, learning
launch, referrals,
magnify marketing
messages
Unable to block but
could reduce
referrals if unhappy
with outcomes
Ongoing
communication, &
engagement,
dissemination of
program eval results
56
Appendix G
ThriveTogether! Curriculum Manual & Prototype Testing Highlights
Feedback Summarized - six care partner reviewers & two experts (dementia care & e-learning instructional design)
Criteria
Did the training meet the criteria?
Reviewer Feedback - May/June 2021
YES NO UNSURE
The learning objectives
in the module are
achieved
X Liked the on-line access – flexible learning. Appears easy to navigate.
Great for care partners. Curriculum is understandable and addresses
different learning styles/needs.
Content is great. Enjoyable training, new content, you get a supportive
feeling going through the training. There is nothing like this anywhere.
It promotes deep reflection. There are areas addressed that are neglected
in other trainings (i.e., relationships, empathy, perspective of PLWD
and Care Partner, the need for meaningful activity engagement for
PLWD, being present, empathy, etc.) these are all really important, but
no one talks about these aspects of care. They just talk about memory
loss and care tasks – not about the relationship, which is the hardest
part.
The training sets a positive tone. Addresses both the positive aspects
and the struggles of being a care partner. Acknowledges common
feelings and lets people know these feelings are normal, and you are not
alone. Likes the reflections on the role of being a care partner and the
help/tips for people to determine if the care partner role is right for them
or not. Felt the Senses Framework resonated and would help people
understand what is important to PLWD. Exercises and reflections are
great.
Appreciates that lessons are short and concise—not too overwhelming,
care partners can take this in. The lessons are calming and brief with
helpful tips. Care partners don’t have time to figure everything out, so
this helps break things down quickly. Likes that you can go at your own
pace. Could binge on it or watch a little at a time. Supplemental material
is helpful, you can use as much or as little as you want.
Believes the training would also be used by the circle of friends and
family that tend to disappear after a diagnosis. This could be made
available to them, so they better understand and stay connected. I think
they would watch it and it would help them understand things. I wish
this would have been available for my family/friends when I was taking
care of my mother. Everyone felt uncomfortable around her so didn’t
visit.
Likes the community forum, micro lessons, and coaching. The
information/resources make you feel you’re not alone, which is a
pervasive feeling for care partners. You get the diagnosis and then the
doc just sends you home without help, no follow up or any information.
You feel alone and lost. This would help…you may not want to attend a
support group right away or be with other people going through the
same thing, but you are curious so this training would help provide
needed information. You can fit it into the day. Having the social forum
fulfills the need to connect but you don’t have to do it in person. That is
a benefit for a lot of people, especially if they’re overwhelmed.
Likes the multi-cultural resources and wonders if there will be
more…perhaps interviews with people from different cultural groups
would be helpful.
Key words in the
module are
understandably defined
X
Modules will be useful
& understandable to
care partners
X
Modules are engaging
and/or thought
provoking
X
The exercises and tools
are useful and
understandable
X
The reflections are
useful and
understandable
X
The knowledge check
questions make sense
X
The suggested readings,
viewings, etc., are
useful
X
Modules will help
improve care partner
relationships w/people
living with dementia
(PLWD)
X
Modules are culturally
responsive and sensitive
to diversity, equity, and
inclusion.
X
57
Appendix H
ThriveTogether! Prototype
Figure H1
Figure H2
58
Figure H3
Figure H4
59
Figure H5
60
Appendix I
Curriculum Manual
To learn more about the curriculum, please contact the program designer through
LinkedIn, or Dr. Renee Smith-Maddox.
61
Appendix J
ThriveTogether! Project Management Gantt Chart – EPIS Implementation Framework
2020 2021 2022
Exploration
Research area
1/1/2020 6/1/2021 370 100%
Protype
1/1/2020 6/1/2021 370 100%
Feedback on design
1/1/2020 6/1/2021 370 100%
Aging Wisdom Principals approve program
1/1/2020 6/1/2020 109 100%
Preparation
Create implementation plan
8/1/2020 6/1/2021 217 100%
Curriculum/Instructional Design
8/1/2020 9/1/2021 283 75%
Curriculum/Protype testing
5/1/2021 9/1/2021 88 95%
Enhance Infrastructure (LMS)
10/1/2020 12/1/2021 305 85%
Marketing & Communications Plan - ongoing
6/1/2020 12/1/2022 654 80%
Educate Team About Program - ongoing
6/16/2020 12/2/2021 643 80%
Implementation
Design revisions - ongoing
5/1/2020 12/1/2022 675 75%
Launch program - Q3 2021
8/1/2021 10/1/2021 45 0%
Training of team moderators/coaches
8/1/2021 12/1/2022 349 0%
Fidelity checks - ongoing
10/1/2021 12/1/2022 305 0%
Collect outcome data - ongoing
10/1/2021 12/1/2022 305 0%
Sustainment
Follow up & performance evals
10/1/2021 12/1/2022 305 0%
Review outcome data & disseminate
10/1/2021 12/1/2022 305 0%
Adjust program based on feedback
10/1/2021 12/1/2022 305 0%
M ont h 4 - 6
TASK NAME START DATE END DATE DURATION
PERCENT
COMPLETE
M ont h 1- 3 M ont h 4 - 6 M ont h 7- 9 M ont h 10 - 12 M ont h 13 - 15
Jan-Mar Apr-June Jul-Sept Oct-Dec Jan-Mar Apr-June Jul-Sept Oct-Dec Jan-Mar
M ont h 7- 9 M ont h 10 - 12 M ont h 13 - 15 M ont h 16 - 18 M ont h 19 - 2 1 M ont h 2 2 - 2 4
Apr-June Jul-Sept Oct-Dec
62
Appendix K
Lean Canvas
Le n n : Thri eTogether Eradicate Social sola on
uly
ullie ray
e-Learning course asynchronous
Live coaching services
Funding sources
ging isdom S - orp long -term investment of nancial resources sta
Training and live coaching fees
Eradicate Social sola on
mong eople Living with
Demen a
Demen a symptoms disrupt
rela onships Family care
partners struggle to ad ust to
interpersonal changes and
emo onally withdraw from
the rela onship This leaves
people living with demen a
feeling isolated and lonely
Social isola on and loneliness
reduce quality of life and
increased mor idity
mortality from all causes
ThriveTogether is eLearning
program designed for family
care partners who will learn
how to uild strong
rela onships with a person
who is living with demen a
The program addresses
common challenges and will
provide strategies resources
coaching and tools to
learners
Rela onal quality
Sa sfac on with training
Sales num er of
par cipants
This training program will
strengthen rela onships
for those living with
demen a and their care
partners
Stronger rela onships
reduce perceived isola on
which in turn will lead to
e er quality of life for
those living with demen a
and their care partners
are partners will en oy
more sa sfying
rela onships with those
living with demen a
mproved rela onal
quality
Reduced perceived
isola on
e er quality of life
Training programs focused
on the medical model and
person-centered care
model
See compara ve analysis
of other training programs
Family care partners
users
eople living with
demen a ene ciaries
ealth and human service
professionals
stakeholders
dapted from Lean anvas usiness Model
63
Appendix L
SWOT Analysis
64
Appendix M
Value Proposition for Care Partners
65
Appendix N
Budget: Startup & First Full Year of Operations
Table N1
ThriveTogether! Start Up Budget ThriveTogether! First Full Year of Operation
INCOME Total INCOME Total
Operating Income - #Student Goal 700 Operating Income - #Students Goal 1,400
4 hour on-line training (Price - $150) 114,555 4 hour on-line training (Price - $150) 210,000
Live Coaching (25% of participants @ $185) 32,375 Live Coaching (25% of participants @ $185) 64,750
Total Operating Income 146,930 Total Operating Income 274,750
Non-Operating Income Non-Operating Income
Interest Income - Interest Income 0
Other - Other 0
Total Non-Operating Income - Total Non-Operating Income 0
Total INCOME 146,930 Total INCOME 274,750
Total Total
Operating Expenses Allocated Operating Expenses Allocated
Salaries & Wages - percent allocated - Salaries & Wages - percent salary allocated
Marketing - 20% 12,000 Marketing - 20% 12,000
Admin Support - 10% 5,004 Admin Support - 10% 5,004
CM Trainer - 50% 43,680 CM Trainer - 100% 87,360
Benefits (25% of salaries) 15,171 Benefits (25% of salaries) 26,091
Advertising/Marketing Allocated 5,400 Advertising/Marketing Allocated 12,000
Insurance Allocated 1,200 Insurance Allocated 1,200
Technology Allocated 4,800 Technology Allocated 4,800
Professional Svcs Allocated 6,000 Professional Svcs/Consulting 12,000
1099 Consultants 33,900 Office Supplies Allocated 600
Office Supplies Allocated 475 LMS Platform Fees 3,600
LMS Platform Fees 2,800 Telephone/Internet Allocation 2,400
Telephone/Internet Allocation 2,400 Utilities 300
Utilities 300 Total Operating Expenses 167,355
Total Operating Expenses 133,130
Non-Recurring Expenses
Non-Recurring Expenses Equipment 2,400
Equipment 4,200 Other Misc 2,400
Other Misc 2,400 Total Non-Recurring Expenses 4,800
Total Non-Recurring Expenses 6,600
Total EXPENSES 172,155
Total EXPENSES 139,730
Net Income Before Taxes
102,595
Net Income Before Taxes 7,200 Income Tax Expense 25,649
Income Tax Expense 1,800
NET INCOME 76,946
NET INCOME 5,400
EXPENSES EXPENSES
66
N2 – Notes to Financials
Income/Revenue Forecasts
• Estimated using a projection of 700 students (startup) and 1,400 students (FFYO).
• Live coaching revenue was conservatively estimated at one hour for 25% of enrolled
participants.
• Estimated to break even in the startup and realize a profit of $76,946 in the FFYO.
Program Fees
• Fees are competitive with other dementia training programs that were surveyed and found to
charge on average of $50 per hour compared to Aging Wisdom’s fee of $37.50 per hour.
• Live coaching fees align with the standard regular hourly consulting rate at Aging Wisdom.
Personnel Expenses
• Staffing is listed as a percent of time staff are expected to spend working in this program.
Staff will include marketing and communications director, administrative staff, care manager
trainer/moderator.
• Administrative support is expected to be minimal due to the automated LMS platform
allowing participants to self-register, view, and pay for the training remotely.
• Staff benefits are allocated at 25% of salary.
• Costs for independent consultants for technology and instructional design are expected to be
gradually reduced during the startup phase as the program takes hold.
Operating Expenses (Non-Personnel)
• Operating costs are allocations to the program from the Aging Wisdom operating budget.
• Since the program is offered virtually, and lessons are pre-recorded, operating costs are
minimized and are likely to remain stable year after year.
• Independent contractor fees were determined based on discussions with consultants.
• Variable operating costs are estimated based on Aging Wisdom’s historical spending pattern.
• Professional services refer to bookkeeping and business consulting support from independent
contractors that routinely work with Aging Wisdom. Professional services are allocated and
averaged based on Aging Wisdom’s historical data.
• The LMS platform fee covers platform access for an unlimited number of students, IT
support, internet security, maintenance fees, and some marketing support.
Taxes
• Taxes are projected at 30% of net profit.
67
Appendix O
Marketing Materials/Infographics
Figure O1
Figure O2
68
Figure O3 Figure O4
69
Figure O5
Social Media Meme
How it started How it’s going
Dementia is not a tragedy – the tragedy is in the way it is framed, explained, understood, and managed. #ThriveTogether!
70
Appendix P
ThriveTogether! Program Evaluation
Table P1
Learning Module Evaluation
Please rate your response to what you learned in this learning module.
Questions 0
No
1
Unsure
2
Yes
1. I understand what was taught.
2. I can use what was taught right away.
3. What was taught will be helpful in practice.
4. I will use what was taught in the future.
5. I am confident I can apply what was taught.
6. I am committed to applying what was taught.
7. How will you use what was taught? Open ended
8. What challenges will you have implementing the
strategies taught?
Open ended
9. Provide any other comments about this module and the
impact it will have on you and your situation:
Open ended
Table P2
Mid-Point & Post-Training Skills Evaluation
Please complete the evaluation about what you learned in this training program to this point.
1. Please rate the degree to which you applied what you learned in this training program.
0
Did Not Apply
1
Applied Slightly
2
Applied Moderately
3
Applied Significantly
2. Please describe the results of using what you learned to date in this training program.
0
Did Not Use
1
Slightly Helpful
2
Moderately Helpful
3
Very Helpful
71
Table P3
ThriveTogether! Post-Program Evaluation
Impact & satisfaction with training
1. How much positive improvement
occurred in your relationship with the
person living with dementia because of
this training?
0
No
change
1
Small
2
Medium
3
Large
4
Very large
2. As a result of this training, in what ways
have you used what you learned?
Open ended
3. What was the biggest impact of this
training program on you and/or the person
living with dementia?
Open ended
4. What was the effect of these program
features on your learning experience?
Rating of the effect on learning
Did
not use
0
No
effect
1
Small
effect
2
Medium
effect
3
Large
effect
• The course itself
• Live coaching sessions
• Targeted mini lessons (e.g., driving,
bathing)
• Supplemental information/resources
• Exercises (including reflection
prompts)
• Community forum
• Downloadable tools and handouts
5. How satisfied were you with the training
program?
0
Not at all
1
Somewhat
2
Moderately
3
Highly
4
Very
Highly
6. Provide any other comments about your
learning experience and/or suggestions you
would like to make for improving this
program.
Open ended
Abstract (if available)
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Asset Metadata
Creator
Gray, Jullie
(author)
Core Title
ThriveTogether!: a dementia-focused, relationship-centered e-learning program
School
Suzanne Dworak-Peck School of Social Work
Degree
Doctor of Social Work
Degree Program
Social Work
Degree Conferral Date
2021-08
Publication Date
08/05/2021
Defense Date
07/29/2021
Publisher
University of Southern California
(original),
University of Southern California. Libraries
(digital)
Tag
ambiguous loss,caregiver,caregiving,dementia,e-learning,family care partner,Isolation,Loneliness,OAI-PMH Harvest,person-centered care,relational care,relationship-centered care,Social Work Grand Challenge,Training
Format
application/pdf
(imt)
Language
English
Contributor
Electronically uploaded by the author
(provenance)
Advisor
Smith-Maddox, Renee (
committee chair
), Araque, Juan Carlos (
committee member
), Hunter, Harry (
committee member
)
Creator Email
jgray@agingwisdom.com,julliegr@usc.edu
Permanent Link (DOI)
https://doi.org/10.25549/usctheses-oUC15710716
Unique identifier
UC15710716
Legacy Identifier
etd-GrayJullie-9975
Document Type
Capstone project
Format
application/pdf (imt)
Rights
Gray, Jullie
Type
texts
Source
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(contributing entity),
University of Southern California Dissertations and Theses
(collection)
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Tags
ambiguous loss
caregiver
caregiving
dementia
e-learning
family care partner
person-centered care
relational care
relationship-centered care
Social Work Grand Challenge
Training