The process of family-centered counseling for caregivers of persons with dementia: barriers, facilitators and benefits

Abstract

ABSTRACTBackground: Despite the high consistency of evidence in favor of person-centered care, little information is available on how person-centered and family-centered interventions are actually provided. The aim of this study is to gain insight into the provision of the effective New York University Caregiver Intervention (NYUCI) in order to enhance its implementation.Methods: This is a qualitative study using a grounded theory approach. Group interviews were carried out with three purposefully sampled counselors who had provided the NYUCI.Results: Six themes were identified: (1) family problems, (2) ways to deal with these family problems, (3) barriers encountered by counselors,(4) ways to deal with these barriers, (5) facilitators or rewards of being a counselor, and (6) perceived effectiveness.The problem categories were (a) conflicts within families; (b) past experiences and personality; and (c) daily living with dementia. Ways of helping caregivers deal with these problems included problem clarification from the perspectives of the key players. An important barrier was reluctance to be helped. This was dealt with by acknowledging caregivers’ need for control over situations. Additional effects of participation in the NYUCI observed by the counselors were reduction of anger and awareness of more and new options for dealing with dementia.Conclusions: Person- or family-centered care offers new perspectives on problems that are seemingly unmanageable. We hypothesize that seeing new and more options is a direct effect of this person-centered counseling. This might be an important outcome to be measured in future studies.