Supports received by the families of people with neurodegenerative disease: a quantitative and qualitative approach

Abstract

Introduction: When neurodegenerative disease (ND) is diagnosed, the family’s quality of life (FQoL) changes drastically. Within the concept of FQoL, the supports they receive from others at the community level and from services is one of the most important issues. Nonetheless, studies available using a mixed-methods approach are still limited. Consequently, the objective was to study the domains of support from services and support from others (emotional and practical), through the application of a quantitative instrument and the conduction of focus groups. Method: Three hundred relatives of people with ND, recruited from Regional Health Management of Castille and 14 Leon (Spain) completed the instrument FQOLS–ND, a specific scale for measuring quality of life in families caring for people with a ND. The mean age of the sample is 62.4 years and the majority are females (70%). In addition, a focus group was carried out with 10 family members (70% females, mean age= 61.6) aiming at the analysis of the quality of life domains. Results: The domains support of others (emotional and practical) and support from services achieved low quantitative levels specially in terms of achievement (M emotional =3.30; SD emotional = 1.21; M practical = 3.09, SD practical = 1.26; M services = 2.83; SD services = 1.02;). In the focus group, the main topics mentioned as negatively affecting the FQoL were social isolation, access and correct follow-up in specialized care services, lack of information on the diagnosis and progression of ND and on the needs of the person, and lack of empathy of professionals and others. Conclusions: ND negatively and significantly affects the family as a whole. Despite this, the emotional and practical support they receive from both other community members and professionals and services is still very insufficient. Therefore, it is important to raise awareness of the needs of this population and to carry out transformations in the attention provided.