Individualized and ecological analyses of the needs of family caregivers of older adults with dementia: The phenomenological approach

Background
Dementia is a worldwide public health challenge. Caring for a person with dementia affects their caregivers in different ways.

Objectives
Using an integration of the Model of Human Occupation (MOHO) and Bronfenbrenner’s ecological systems theory (EST), this study aimed at exploring the needs of and stress arising in family members who are caregivers of people with dementia and identifying the coping strategies these family members use in caring.

Methods
Using the purposeful sampling strategy and a blend of closed-and-open-ended questions, four focus groups were conducted in four different districts. A phenomenological explanation approach was used to examine participants’ caring experience and their needs.

Results
Eighty family caregivers (FCGs) of people with dementia, who are their family members, were recruited. Seeking understanding, stabilization, preparation, implementation, and adaptation are the themes that were identified for analysis. The results indicated caregiving is a demanding task, both mentally and physically.

Conclusion
Being older, having a lower socioeconomic status and having lower levels of informal support were related to higher levels of care stress and poorer coping strategies in FCGs. Moreover, active service provision can be started in the early stages of caring and this should accompany with the active involvement of service in the volitional aspects of the FCGs.