Neurodegenerative diseases (NDs) are one of the major causes of dependency among older people. Since family members assume most of the care, the impact of NDs goes beyond the patient and affects the functioning of the entire family. Nonetheless, the concept of Family Quality of Life (FQOL) is still insufficiently developed in this field: the literature has focused on family caregivers from an individual perspective, paying less attention to the family unit. Hence, the objectives were to describe FQOL of people with NDs and to identify factors associated, from a holistic point of view.

The sample consisted of 300 family members of patients with NDs (70% females; mean age: 62.4) living in the cross-border region of Spain-Portugal, mostly in rural areas. The majority were primary caregivers. They completed the FQOLS–ND via telephone. This survey examined how the family perceived its FQOL at the global and domain-level, in terms of attainment and satisfaction (measured on a 5-point Likert scale). It also collected data on diverse respondents’ and family characteristics.

The average score in Global FQOL was 3.65 (SD = 0.70) for attainment and 3.69 (SD = 0.47) for satisfaction. By domains, the highest value was found in Family Relations and the lowest in Support from services. Twenty hierarchical multiple regressions examined the potential predictors of Global FQOL and the nine domains for attainment and satisfaction. Medium predictive values (from R2=.14 to R2=.20) were found in Financial wellbeing (satisfaction), Support from services, and Leisure. The number of perceived barriers to social-health services was a significant predictor in all the explanatory models (the most frequently cited being: long wait for service, services not available, problems with transportation, lack of information, and financial costs).

These results confirm that NDs are especially challenging in rural areas, where families feel more isolated and have fewer opportunities to receive professional support. Therefore, there is a need to design of a specific portfolio of services, resources and benefits that involves the key sectors of family welfare (public, private, third sector and family) and brings them closer to these areas, covering all the needs.

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.

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.

The domains support of others (emotional and practical) and support from services achieved low quantitative levels specially in terms of achievement (Memotional=3.30; SDemotional= 1.21; Mpractical= 3.09, SDpractical= 1.26; Mservices= 2.83; SDservices= 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.

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.