Emotional Resilience Training to Support Care Partners of People Living with Dementia: A Pilot Study

Introduction

There are nearly 12 million care partners of people living with dementia (PLWD) who provide unpaid care in the United States. ¹ Care partners of PLWD face tremendous stress daily. This group reports higher levels of care partner burden and psychological distress when compared to other types of care partners.^2,3

Care partner burden can be defined as the “multidimensional response to physiological, emotional, social, and financial stressors associated with the caregiving experience”. ⁴ This burden can lead to increased rates of anxiety, depression, poor quality of life, chronic health conditions, and premature death in care partners.^1,4,5 Care partners are often viewed as the “invisible patient,” bearing significant mental and physical health challenges that go unnoticed. ⁶ Worsening care partner burden can also lead to detrimental impacts for the patient, including poor quality of care, early institutionalization, elder abuse and neglect.^6,7 It is crucial to develop evidence for strategies that support care partners of PLWD using a humanistic perspective in an environment emphasizing kindness, safety, and trust. ⁸

Although mindfulness training can increase positive affect and improve well-being in the care partner population, minimal research has explored emotional resilience training as a potential tool to improve well-being of care partners of PLWD.^9,10 While mindfulness interventions emphasize present-moment awareness and attentional practices, emotional resilience training focuses on the applied development of strengths-based emotional regulation, adaptive coping, meaning-making, and values-aligned action in response to life stressors. Emotional resilience training emphasizes mechanisms such as stress reactivity, recovery, executive functioning, and adaptive appraisal while mindfulness practices function as a contemplative practice. Overall, emotional resilience is a purpose-based, evidence-informed approach to train one’s ability to effectively adapt and respond to stressful situations, and it is a skill that can be taught and developed over time. We report here the results of a pilot training program that aims to increase care partner emotional resilience while they provide high quality care to their loved one(s).

Methods

The pilot study used a mixed methods approach combining qualitative and quantitative measures to explore preliminary changes in emotional regulation and feasibility and acceptability of the program. Emotional regulation was evaluated using self-recorded emotional shifts before and after resilience practices such as heart-focused breathing (Appendix A). Program feasibility and acceptability was evaluated using a 20-question Likert scale (7-point) survey with 5 open response questions (Appendix B), as well as data gathered during a focus group session in which participants discussed their overall experience of the training (Appendix C). Participation in the recorded emotional shifts, survey, and focus session was optional for each participant. Human subjects activities were limited to evaluation of an educational program and, per the Institutional Review Board (IRB) were exempt.

Results

Focus Session and Free Response Survey Questions

Six care partners answered free response questions on the post-training survey, and six participated in the focus session. Results indicate an overall positive experience with the training (see Table 1).

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Table 1.

Post-training Participant Benefits

Tools/techniques	Representative Quotes from Participants
Strengths Inventory	“I enjoyed learning how to use my strengths to drive my caregiving”
	“When I see all those circles (on strengths inventory), I’ll say ‘Hey I ain’t that bad!’”
EGS and Heart-Focused Breathing	“It does a lot of good, for settling you down, for slowing, and for lowering your stress”
	“I had not heard the image of breathing into the heart before, and I found that it gives a focus.”

Insights gained	Representative Quotes from Participants
1) Awareness of emotions	“This is the first time that I have ever come into this support group & felt peaceful.”
2) Connection with others through shared experiences	“I think sharing experiences is a great thing. We are all in the same boat.”
	“Through listening to other people and how they did things, I realized that I have actually done some of those things right, and that’s the most valuable thing.”
3) Gaining new perspectives	“We tend to put ourselves down, but I need to focus on the good I do instead.”
	“It made me feel a little bit better, even though all the same problems are still there. It made me feel a little bit of a different perspective.”
	“I have changed my perspective of life.”

Discussion

Care partners of PLWD agreed that the program was effective, useful, and easy to understand, and that they would use these skills at home. Many participants found that the program improved their ability to respond in stressful situations and that they were now more in touch with their emotions. Most care partners also agreed that they felt uplifted and encouraged after the sessions. Additionally, the majority of care partners experienced a self-reported increase in positive emotions after participating in heart-focused breathing. All of these findings together suggest potential benefits in emotional resilience.

Participants’ favorite aspects of the program included identifying their strengths, learning heart-focused breathing, and connecting with others through shared experiences. Suggested improvements included allowing more time for group discussions and simplifying the program language. The care partners ultimately chose to implement aspects of the training into their future support group sessions and believe that this training may be helpful for other care partners.

With high levels of stress, anxiety, and depression within the care partner community, it is vital that care partner burden does not continue to go unnoticed by healthcare professionals. Previous work has demonstrated that emotional resilience training can improve overall psychological well-being and increase resilience in care partners of patients with schizophrenia, but the present pilot study is one of the first to explore emotional resilience training in care partners of PLWD. ¹³ Further research is needed to investigate support strategies for improving overall well-being of care partners of PLWD.

Limitations

Although this pilot study sample size was small, the findings provide preliminary evidence supporting the feasibility and acceptability of this emotional resilience training modality. As care partners have busy and unpredictable schedules that limit their ability to attend support groups consistently, not all care partners were able to participate in all three sessions. Importantly, the sessions were intentionally designed as optional supportive activities in order to avoid creating additional pressure or burden for participants. However, this flexible attendance structure may have introduced self-selection bias, as participants who attended more sessions may have differed from those who attended fewer.

The small sample size also limits the generalizability of the findings. For example, only care partners of people living with dementia participated in the present study, making it unclear whether the emotional resilience training would be similarly beneficial for care partners of individuals with other chronic illnesses. In addition, the study lacked long-term follow-up data, limiting our understanding of the sustained impact of the intervention over time.

To assess engagement with emotional resilience practices outside of the sessions, participants were asked to complete an EGS tracking worksheet between meetings. However, many participants forgot to complete the worksheets, and the research team aimed to avoid imposing extensive home assignments or follow-up requirements in order to minimize additional care partner burden. As a result, the majority of data were collected during the sessions themselves and primarily reflected participants’ immediate reactions to the intervention. This limits conclusions regarding how the program may influence care partners’ daily lives beyond the training environment.

Another limitation of the present study is the potential for social desirability and interviewer bias. The primary investigator both facilitated the emotional resilience training sessions and conducted the focus groups, which may have influenced participants to provide more favorable feedback or emphasize positive experiences. Future studies may benefit from using independent facilitators or external evaluators to reduce potential response bias and improve objectivity.

To address some of these limitations, an innovative online version of this emotional resilience training for care partners of PLWD was created and can be done asynchronously based on the care partners’ schedules. ¹⁴ While the present study was an exploratory pilot study, future, larger studies should be done and may use validated measures for emotional resilience such as Connor-Davidson Resilience Scale (CD-RISC) or the Positive and Negative Affect Scale (PANAS).^15,16

Conclusions

Care partners of PLWD stated that they enjoyed the emotional resilience training program and appreciated gaining tools for future challenges in caregiving. Participants self-reported an increase in positive emotion after participating in emotional resilience techniques and found it useful to identify their personal strengths. Although further research in this area is needed, this pilot study suggests that emotional resilience training may be a helpful support strategy for care partners of PLWD.

Declarations

Permission was obtained to reproduce and reference the Path2Green/MBN Systems materials included in Appendix D and the referenced online training program. The authors affirm that they have no financial, professional, institutional, employment, advisory, ownership, intellectual-property, or other conflict of interest relationships with Path2Green, MBN Systems, the CARE Center, or the online training program referenced in this manuscript. The inclusion of these materials is solely for scholarly and educational purposes relevant to the objectives of this work.

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