A qualitative study exploring experiences of female family caregivers of people with dementia in acceptance and commitment therapy

ABSTRACT

Objective

Few studies have explored the experiences of family caregivers of persons living with dementia (PLWD) in acceptance and commitment therapy (ACT). This study aimed for in-depth exploration on experiences of family caregivers of PLWD in ACT.

Method

Individual interviews were conducted with eight family caregivers of PLWD who were women and participated in an eight-week video conferencing ACT program. Data were analysed using interpretative phenomenological analysis.

Results

Two overarching themes emerged, including improved strategies in responding to emotions and thoughts in challenging caregiving situations and taking better care of myself. Participants perceived that ACT skills training improved their coping strategies and, subsequently, their daily emotions and relationship with their relatives with dementia. Participants also perceived ACT strategies and exercises as helpful and applicable resources for daily use in challenging caregiving situations. In addition, ACT helped participants feel comfortable taking the time to take care of themselves without feeling guilty and acknowledge that they must take care of themselves first to take better care of their relatives with dementia. These changes helped caregivers increase their participation in valued activities.

Conclusions

This study contributes to the literature by exploring experiences of family caregivers of PLWD in ACT, including its perceived benefits on themselves.

Trial registration: ClinicalTrials.gov ID: NCT04847986 (https://clinicaltrials.gov/ct2/show/NCT04847986)

KEY POINTS

What is already known about this topic:

1. Adverse mental health outcomes in family caregivers of persons living with dementia (PLWD) can result from caregivers’ difficulties in accepting challenges and emotions and the lack of strategies for managing their own emotions and balancing care demands with other important aspects of life.

2. Acceptance and commitment therapy (ACT) is an evidence-based practice that can promote mental health and engagement in personally valued activities through acceptance and mindfulness processes and behaviour change processes for valued living.

3. There have been only two studies that involved a qualitative approach to explore the experiences of family caregivers of PLWD in ACT. These feasibility studies found that contents covered and the online delivery formats for ACT were acceptable to family caregivers of PLWD.

What this topic adds:

1. The present study contributes to the literature with in-depth exploration on experiences of family caregivers of PLWD in ACT with thick descriptions, including the benefits of ACT from the perspectives of family caregivers of PLWD.

2. ACT helped family caregivers of PLWD improve strategies for responding to their emotions and thoughts that arise from challenging caregiving situations. Caregivers also perceived ACT as helpful and applicable for daily use in challenging caregiving situations.

3. ACT helped these caregivers feel comfortable taking the time they needed to take care of themselves without feeling guilty and acknowledge that they must take care of themselves first to take better care of their relatives with dementia; these changes helped caregivers increase their participation in valued activities.

KEYWORDS:

• Acceptance and commitment therapy
• caregivers
• dementia
• mindfulness
• psychological distress

Acknowledgments

We are grateful to all the study participants for giving their precious time and goodwill in volunteering for the present study. We appreciate the support from the directors of the Area Agencies on Aging and adult day programs for their help in participant recruitment, Donna Burnett for her help in managing the process of the research grant, and Emily Delzell for her help in editing this manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

Some data for individual participants are reported in the main text and supplemental materials as pseudonyms, including individual characteristics of and direct quotes from participants.

Supplementary material

Supplemental data for this article can be accessed at https://doi.org/10.1080/13284207.2023.2285803

Additional information

Funding

This research was supported in full with an AOTF Intervention Research Grant (AOTFIRG21Han) funded by the American Occupational Therapy Foundation.