What are the essential features of resilience for informal caregivers of people living with dementia? A Delphi consensus examination

ABSTRACT

Objectives: Few studies have examined what might enable or prevent resilience in carers of people with dementia. Consequently, there are limited insights as to how it should be understood, defined and measured. This creates challenges for research, and also practice in terms of how it might best be promoted. This study aimed to address these limitations and add new insights, identifying the essential features of resilience in dementia caregiving.

Methods: A Delphi consensus study was conducted, consulting a multi-disciplinary panel of informal caregivers and experts with relevant professional expertise. Panellists rated the relevance of various statements addressing essential components of resilience; ‘adversity’ and ‘successful caregiving’ on a 5-point Likert scale. Based on the median and Inter Quartile Range, the most relevant statements with moderate consensus were proposed in Round 2 in which panellists selected up to five statements in order of importance.

Results: Moderate consensus was reached for all statements after two rounds. Patients’ behavioural problems and feeling competent as a caregiver were selected by both caregivers and professionals as essential resilience features. Caregivers also emphasized the importance of social support, the quality of the relationship with their relative and enjoying spending time together. Professionals considered coping skills, experiencing positive aspects of caregiving, and a good quality of life of caregivers most relevant.

Conclusion: The essential elements of resilience selected from multiple stakeholder perspectives can be used to select appropriate outcomes for intervention studies and give guidance to policy to support caregivers more effectively and better tailored to their needs.

KEYWORDS:

• Resilience
• dementia
• family caregivers
• Delphi method
• adversity

Acknowledgements

Special thanks to the following persons for their contribution to the Delphi panel: Dr Carolien Lamers, Dr Catherine Quinn, Prof Esmé Moniz-Cook, Dr Franka Meiland, Prof Rose Marie Dröes, Dr Joseph Gaugler, Dr Martijn Huisman, Prof Amanda Sacker, Heather Lewis, Dr Hein van Hout, Prof Cees Hertogh, Prof Kathy Murphy, Dr Kate Bennett, Prof Myrra Vernooij-Dassen, Rachel Thompson, Rinse Merkus, Prof Pim van Gool, Avril Bradbury, Michael Edward Theaker, Graham Leslie Ray, Ann Pascoe, Martin Sturkop, and the (other) family caregivers who participated.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by the Dutch Alzheimer's Association (Alzheimer Nederland) [grant number WE.15-2014-05].