Loneliness is common in care partners of persons with Alzheimer's Disease (AD) and
AD-related dementias (ADRD). In the United States, more than 6 million people have
AD/ADRD. This number is expected to reach 13 million by 2050, increasing the number of
care partners proportionately. More than 60% of care partners of persons with AD/ADRD are
lonely, defined as the distressing experience when one's relationships are poorer in
quantity and quality than desired. This is not surprising given the unique experience of
caring for a person with AD/ADRD, characterized by declines in intellectually stimulating
conversation, loss of mutual support, and avoidance of social outings. Already elevated,
care partners' loneliness is among the problems exacerbated by the COVID-19 pandemic.
Loneliness is associated with a 26% increased risk of mortality, and physical and mental
morbidity. In longitudinal studies, loneliness significantly predicts heart attack,
diabetes, depression, anxiety, and distress. Studies of care partners show that
loneliness is associated with poorer quality of relationships, and burden, as well as
negative patient outcomes. Therefore, there is an urgent need for effective
evidence-based interventions to reduce loneliness in care partners of persons with
AD/ADRD. Existing interventions for care partners of persons with AD/ADRD demonstrate
limited efficacy in reducing loneliness. Existing interventions focus on providing
education, decision support, skills training, and stress management. In all these cases,
the intervention did not significantly reduce loneliness at follow-up. Existing
interventions have not attempted to reduce loneliness through increasing care partners'
sense of meaning and purpose in life, despite strong evidence that increased meaning in
life predicts reduced loneliness. A qualitative analysis of 119 loneliness interventions
demonstrated that their limited efficacy is due to a lack of content focused on meaning
in life. Several empirical studies indicate a strong, inverse relationship between
meaning and loneliness. Macia et al. 2021 found that meaning in life was the most
important predictor of loneliness, and the authors recommend targeting meaning in life in
future interventions. Folker et al. 2021 theorize that meaning in life promotes a better
ability to cope with loneliness. Interventions to reduce loneliness in AD/ADRD care
partners may be strengthened by incorporating concepts from Meaning-Centered
Psychotherapy (MCP). MCP focuses on exploring sources of meaning in life and is based on
the premise that finding meaning and purpose in one's existence is a primary force of
motivation. Examination into the mechanism of change in MCP demonstrated significant
mediation effects via a sense of meaning and purpose in life on outcomes of improved
quality of life, and decreased depression, hopelessness and desire for hastened death.
Yet, the impact of MCP on loneliness has not yet been systematically evaluated. MCP,
originally found to increase a sense of meaning and purpose in life in patients with
advanced cancer, has since been adapted for many populations, including care partners.
The MCP adaptation for care partners was led by Dr. Allison Applebaum (consultant),and
focuses on finding meaning and purpose in life through one's role as a care partner,
regardless of the illness the care recipient has. Dr. Applebaum found MCP to be
efficacious in increasing meaning and purpose in life in cancer care partners when
delivered via brief videos. Therefore, the overall goal of the proposed project is to
reduce AD/ADRD care partners' loneliness through increasing their meaning and purpose in
life using concepts from MCP. The investigators expect that reducing loneliness will
reduce care partners' negative outcomes, such as depression, anxiety, distress, and
burden. These MCP concepts will be delivered via RELOAD-C (REducing LOneliness in
Alzeheimer's Disease-Care Partners), a web-based platform that centralizes 6 brief videos
of an MCP expert (Dr. Applebaum) discussing sources of meaning, links to virtual group
meetings facilitated by a social worker trained in MCP to promote discussion of MCP
concepts, and written content providing guidance on homework and exercises referenced in
the MCP videos. The investigators currently do not know the effect of MCP videos on
increasing meaning and purpose in life in AD/ADRD care partners, though they expect these
videos to be efficacious as they were with cancer care partners. It remains unclear
whether watching these MCP videos, which lacks bi-directional interaction, is sufficient
to also reduce loneliness in care partners of persons with AD/ADRD. Interventions that
show promise in reducing loneliness in care partners of persons with AD/ADRD, based on
evaluations in small samples, are those that focus on increasing opportunities for
communication through group meetings. Building off the strengths of the existing
literature, then, the investigators expect that adding virtual group meetings focused on
discussion of MCP concepts will produce a comparatively larger reduction in loneliness
than watching MCP videos alone. Thus, to advance the field, the investigators will
conduct a pilot randomized controlled trial (RCT) to preliminarily evaluate the strength
of each RELOAD-C component (MCP videos, MCP virtual weekly group discussions) on care
partners' loneliness. The software platform that the investigators will be adapting to
produce RELOAD-C was developed by Dr. Michael Diefenbach (primary mentor) to deliver
intervention content through videos and interactive features to bladder cancer patients
and their care partners. Care partners of persons with AD/ADRD experience barriers to
participating in in-person interventions, including unique concerns (e.g. they cannot
leave the patient alone). Thus, delivering intervention content via a web-based platform
maximizes reach whilst obtaining comparable clinical effectiveness as traditional
in-person interventions. Overview of the research design. Aim 1a: Preparatory Work: the
study team will modify the script from Dr. Applebaum's videos of MCP for cancer care
partners to ensure the language is suitable for AD/ADRD care partners (i.e. remove
references to cancer and cancer-specific challenges), Aim 1b: Stakeholder Involvement:
The study team will circulate these scripts/drafts created in Aim 1a to N=15 care
partners of persons with AD/ADRD to obtain feedback. This will occur in two rounds, the
first of which is dedicated to obtaining feedback and the second of which is dedicated to
soliciting final comments after the feedback from the first round has been integrated.
Aim 1c: Adaptation of an existing web-based delivery platform: Michael Diefenbach
(primary mentor) developed a web-based platform to deliver and reinforce intervention
content to patients with bladder cancer. The study team will adapt this existing platform
by replacing the bladder cancer content with MCP content prepared and revised during Aims
1a-1b, producing RELOAD-C. Aim 2: Usability and Acceptability Testing Phase of RELOAD-C
will be achieved through a mixed-methods design and the Think Aloud method a direct
observation method of user testing that involves asking users to think out loud as they
are performing a task, with N=20 AD/ADRD care partners. Aim 3: Pilot RCT: Using a
modified cluster RCT design with two-step randomization, N=96 care partners will be
randomized to usual care (n=32), MCP videos delivered via RELOAD-C (n=32), or MCP videos
plus virtual group meetings delivered via RELOAD-C (n=32). Care partner outcomes will be
assessed at baseline, and 6-weeks and 3-months post-baseline.