A pilot study published in the medical journal Aging & Mental Health evaluates the efficacy of a STELLA-FTD, a remote support program tailored to the needs of families affected by FTD. Principal investigator Allison Lindauer, PhD, of Oregon Health & Science University (OHSU), received an AFTD Pilot Grant for the study in 2020.

The stress and isolation inherent in FTD caregiving can leave care partners with health complications like anxiety and depression. To make matters worse, compared to Alzheimer’s disease (AD), there is a significant lack of training and resources available to guide FTD care partners.

To address the shortage of resources and training, Dr. Lindauer’s team set out to revise an existing intervention program, Tele-STELLA, that was designed to help care partners address the difficult and distressing behaviors associated with AD and related dementias.

Their study was divided into two phases:

• Phase 1: Considering how FTD differs from AD, the research team set out to collect feedback from FTD care partners to revise Tele-STELLA to better meet their needs . The team recruited 15 care partners from the OHSU Aging and Alzheimer’s clinic, social media postings, and postings through AFTD. The cohort participated in a focus group and survey and was asked to provide feedback on the Tele-STELLA handbook.
• Phase 2: Using care partner input, Dr. Lindauer and her team adapted Tele-STELLA to better match the behaviors of FTD, calling the new intervention STELLA-FTD. They then conducted a pilot study to evaluate its feasibility and how readily care partners would accept it. Sixteen participants were recruited through several means, including referrals from clinics, social media posts, and through organizations like AFTD. Two participants were also recruited from ALLFTD. Participants took part in STELLA-FTD sessions through a telehealth platform and were asked to provide feedback.

The phase 1 focus group provided Dr. Lindauer’s team with three main recommendations from care partners: create an FTD-specific roadmap, meet in groups, and simplify the handbook. Care partners specified that a roadmap explaining what to expect with FTD and how to manage associated challenges would be the most useful, while meeting in groups would provide opportunities to learn from one another. The 10 participants who reviewed the handbook noted that it needed specific information on FTD and guidance for providers and services.

Dr. Lindauer’s team developed STELLA-FTD as a group-based, tech-enabled intervention guided by care partner feedback and philosophical principles. STELLA-FTD differs from Tele-STELLA in its focus on self-efficacy theory, which posits that care partners who believe they are competent in managing FTD symptoms will be more successful in mitigating them and will feel less bothered by them. To align the program with a World Health Organization mandate to incorporate rehabilitative sciences in dementia care, the team included presentations from rehabilitation specialists with FTD experience in the curriculum.

The phase 2 STELLA-FTD pilot occurred across eight weekly one-hour sessions offered through the WebEx videoconference platform. After the initial orientation session, subsequent meetings would begin with a 20-minute presentation by an expert on a topic pertinent to the roadmap, with a question-and-answer segment following it where care partners could share their insights and connect. The team guided care partners to consider each topic in the context of their situation and were asked to write their plans to address symptoms in the handbook.

The study found that STELLA-FTD was feasible for care partners; the team defined feasibility as an 80% adherence to study activities, and while a care partner withdrew from the study, the remaining 15 attended 92% of all sessions. Of the 13 care partners that completed the post-program survey, all agreed that STELLA-FTD was easy to participate in; all but one did not experience any difficulties with WebEx. All participants reported being satisfied with STELLA-FTD and confident they could use their skills to manage FTD-related behaviors.

Analyzing the post-program survey, Dr. Lindauer’s team found that there had been some improvements in the mood of care partners and the distress they experienced in handling FTD behaviors:

• 7/13 care partners reported fewer negative reactions to FTD-related behaviors.
• 10/13 care partners noted a decrease in the frequency of distressing behaviors.
• 10/13 care partners experienced an increase in self-efficacy in managing symptoms.
• 7/13 reported an improvement in their depressive symptoms.

Nine of the 13 care partners in the program took part in the post-program focus group, which centered around four areas of discussion:

• Balancing Knowledge and Community: Care partners emphasized how important it was to learn from professionals with FTD experience, especially in the company of peers. Care partners appreciated being able to learn their options while having people who understood their role to trade insights with.
• Program Content: The care partners greatly appreciated having FTD-specific resources and a roadmap and were especially grateful for receiving information on all FTD variants. Many noted the comprehensive nature of the curriculum, which they saw as a resource they could return to as needed. The approach they were taught was helpful, but care partners seldom created written plans, putting program practices to work on the fly instead.
• Environment: Care partners were comfortable meeting in a digital setting, noting that they felt the sessions were a “safe space” to connect with peers. It was recommended that professional presentations be pre-recorded to be viewed at any time.
• Logistics: Care partners reported the program was manageable in terms of duration, time of day, and total program length. Some reported difficulty making connections in the larger group setting. Breakout sessions were recommended, allowing smaller groups to meet based on FTD subtype or symptoms.

Dr. Lindauer and her team plan to pursue a more extensive study to assess STELLA-FTD with a more significant cohort of care partners.

FTD researchers are increasingly incorporating input from persons diagnosed, care partners, and family members into studies, such as this study that assembled a focus group to explore how speech-language therapy can be better tailored to the needs of people with primary progressive aphasia (PPA), or this study that sought the perspective of care partners on bvFTD symptoms.