‘They simply do not understand’: a focus group study exploring the lived experiences of family caregivers of people with frontotemporal dementia

Abstract

Background

Frontotemporal dementia (FTD) has a profound impact on the spouse and other family caregivers involved. While caregivers have a need for support, it is difficult for healthcare providers to respond to their specific needs. This qualitative study explores the lived experiences and needs of caregivers of persons with FTD to facilitate the development of support.

Methods

Three focus group discussions were organized to explore the lived experiences of Dutch FTD caregivers. The included caregivers (n = 24) were aged 16 years or older and were involved in the care of a relative with FTD. Two researchers independently performed an inductive content analysis using open and axial coding.

Results

The main category emerging from the data was a lack of recognition, acknowledgment, and understanding experienced by caregivers. This was linked to caregivers’ experiences with (1) complex emotional and behavioral symptoms in the person with FTD, (2) the trivializing responses of family and friends, (3) a perceived lack of knowledge and support from healthcare professionals, and (4) the bureaucratic procedures that accompany caregiving. As a result, caregivers felt lonely and solely responsible for the caregiving role.

Conclusion

Caregivers of persons with FTD experience a lack of understanding in caring for their relative with FTD, which contributes to feelings of loneliness. A specialized support approach is needed to address the specific needs of caregivers of persons with FTD. Support should address strategies that caregivers can use to inform and involve family and friends in the caregiving situation to prevent loneliness in FTD caregivers.

Keywords:

• Frontotemporal dementia
• young-onset dementia
• caregivers
• lived experiences
• loneliness

Acknowledgements

We would like to acknowledge the important role of the Dutch peer-support organization [FTD lotgenoten] during this study. In particular, we would like to express our appreciation to Margreet Mantel for her role as ambassador of the project while recruiting participants. We thank Hendrik-Jan van der Waal, chair of the Dutch peer-support organization, for his assistance with interpreting some of the results. In addition, we would like to express appreciation for Yvette Daniels, Esther Gerritzen, and Anne Marieke Doornweerd for their assistance during the focus group discussions.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This study was funded by the Dutch Brain Foundation [Hersenstichting], grant number BG-FTD-SBB.