The final sample for the quantitative part of the study consisted of 300 participants (mean age = 62.4, SD = 13.34). The majority were females, married/with a partner, not working, with low income –up to 1000 EUR per month– and had primary or secondary school qualifications. Most of them were the spouse/partner or son/daughter of the person with ND, they had the role of primary caregiver and lived in the same household. Most of them lived in rural areas of up to 500 or 500-10000 people (Table 1).
As for the characteristics of the care recipients, their mean age was 79.3 years (SD = 11.7), and most were females. The majority suffered from dementia with some level of dependence, generally high or moderate (Table 2).
For the qualitative part of the study, two focus groups were formed, one composed of 10 and the other of 11 participants. The caregiver's age ranged between 40 and 79 years. The majority were females, spouse/partner of the care-recipient, and they had the role of primary caregiver (Table 3).
Confirmation of FQOL-ND structure
The structure of the Spanish version of the FQOL-ND (Author et al., 2021) reproduces the original scale (DiZazzo-Miller et al., 2013).
In this study, all the domains included in the FQOL-ND scale were mentioned in both focus groups, thus confirming their structure. Appendix 2 shows in detail the categories and codes analyzed in each dimension and how many times they were mentioned in each focus group. questions could not be framed within any of the domains of the scale, for example, aspects related to gender (“Society itself imposes excessive psychological dependence, especially for women. Therefore, you feel guilty if you do not do certain things, so you shame yourself into doing them”) and love and affection as an explanation of care (“We have ‘endured’ it, but I do not want to say it in quotes, because I do it with love”).
The analyses of the information obtained in the focus groups revealed that Support from Services (32.7%) and Family Health (31.5%) were the most frequently mentioned topics, and the dimensions with the lowest number of mentions were Support from Others (1.4%) and Careers and Planning for Careers (0.8%).
Domains and dimension’s analysis
The mean scores, medians, and standard deviations for attainment and satisfaction in the nine domains are shown in Table 4, as well as the global and general scores. Table 5 includes the response percentages for each of the Likert-type options.
ANOVA revealed significant differences between the domains, F(8, 2392) = 96.77, p < .001, ηP2 = .25. The significantly higher domains were Family Relationships and Careers and Planning for Careers, whereas the significantly lower ones were Support from Services and Leisure and Recreation (p < .001). Results indicated a significant difference between the dimensions, F(1, 299) = 118.96, p < .001, ηP2 = .29. The mean level of satisfaction was significantly higher than that of attainment. The interaction Domains X Dimensions was significant, F(8, 2392) = 32.69, p < .001, ηP2 = .10, and the post hoc tests revealed that the mean level of satisfaction was higher than that of attainment in eight of the nine domains, although these differences were only significant (p ≤ .001) in Support from Others, Support from Services, Influence of Values, Leisure and Recreation, and Community Interaction.
The relatively high mean scores across dimensions and domains suggest that the participating families generally considered their FQoL as moderate to high. The standard deviation showed considerable variation in individual scores. On another hand, in the focus groups, the QoL of the primary caregiver was generally adversely affected after the onset of ND, as also occurred in the rest of the family. However, resilient skills focused on disease acceptance also emerged:
For me, quality of life is normalization. We cannot return to the normality that we had before because they [the member with ND] present loss of balance, dizziness, they fall asleep, their vocalization fails a lot but I think that, concerning quality of life, we must focus on acceptance. The better we accept our situation, the better we can deal with it, so we do not get exhausted or wear them [the member with ND] out.
And we take it with humor. Let's see, I think it's very dramatic, but we have to laugh. I find laughing so basic.
Then the more extreme scores of these domains were analyzed one by one with mixed methods.
Concerning family relationships, there were high levels of achievement (M = 4.41, SD = 0.72) and satisfaction (M = 4.35, SD = 0.80), in most cases (50.7%) reported as “very satisfactory” or “satisfactory” (37.3%). At the qualitative level, participants mentioned the unavailability of other family members (e.g., siblings of the caregiver or the person with ND) to help with the ongoing tasks. This was mainly due to work or geographical remoteness and hence, the responsibility fell on the main caregiver. However, the existence of timely supports or supports that do not require the physical presence of other family members was also mentioned, which contributed to FQoL in family relationships:
In our case, my sister lives farther away so she cannot come every day to take care of her [the family member with ND]. But we go together to the meetings of the care association and support my mother.
There was a duality in some cases where the presence of the ND constituted a family crisis ("Well, in your case, she [the patient] is your wife, but in my case, it is my brother. I have other brothers. One brother understands it [the situation], but the other does not and says: ‘Well, just to leave it.’ How can just leave the situation? How am I going to leave it if he [the patient] is my brother?”) but in other cases, ND contributed to the family’s union (“The same as I tell you that it has united the family a lot, I also tell you that our friends have disappeared”).
Careers and planning for careers
Less than 20% of families showed some level of dissatisfaction with their job. However, there was a high percentage of family members who were retired (64.7% of our sample was not working, was retired, or unemployed). In fact, in the case of actively working people, ND had a significantly negative effect both on the person with ND and on the other family members, either because they had to give up their jobs or their work obligations were incompatible with the care tasks at the long term:
Of course, it [caring for my family member] is already starting to affect my job.
Support from services
The satisfaction, and especially attainment, of Support from Services was very low (M = 3.11, SD = 1.11; M = 2.83, SD = 1.02, respectively). Concerning the health care of people with ND and their families, there were some complaints about the treatment by the primary care teams and specialized health care services. Moreover, access to a specialized professional or receiving their continuous attention was considered especially problematic. There was also a lack of information about the diagnosis and progression of ND and the needs of the patient:
Another thing I am concerned about is that family caregivers, in this case, husbands or wives, do not receive any help, either psychological or motor. How should you move your husband? You don’t know anything about posture, you are just messing about. How should you treat him?
However, cases of high satisfaction with specialized care professionals were also reported, highlighting the importance of feeling heard and cared for as a priority.
Among the social care services, the psychological and technical support, both for the family and the person with ND, and the presence of resources such as day centers/associations were highlighted as a need. On another hand, residential centers were considered as an option when the disease was more advanced or when the family could not take care of the person with ND. In addition, significant differences were found in the services associated with the person’s diagnosis:
I consider Parkinson's disease as the big loser. The big loser or the big forgotten. When you talk about Parkinson's, well, it means that the person stays at home and gets the tremors... I mean, that is the least... But when you mention Alzheimer's, there are residences for Alzheimer's, there are aids…
Regarding the barriers encountered in access to services, family members highlighted the scarcity of resources (in general and particularly in the rural environment), the lack of public subsidies, the high cost of private resources, the short duration or intensity of care, with patient overloads resulting in lower-quality care or long waiting times to access the resources they needed:
I think the medication does not control it [the ND] very well. I also detect patients who should have a much more timely follow-up, who do not have it. In fact, he [the person with ND] had problems with medication... I asked for an earlier appointment but nobody listened to me.
Therefore, they proposed the creation of more resources in the rural environment and more associations of caregivers, better access to specialized professionals, more information about the procedures to access resources and grants, and a greater number and intensity of activities to be carried out with the person with ND.
According to participants, the availability of resources would improve FQoL and would not only be a way to achieve respite in the task of care but also an opportunity for the family to establish new social ties:
…where we can meet, just like we are doing here. It is going to take a while and it looks like your problem has already improved a little bit. At least you see you are not alone.
Leisure and Recreation
The domain of Leisure and Recreation was scored low both in attainment (M = 3.25, SD = 0.98) and satisfaction (M = 3.43, SD = 0.95). In fact, the relatives mentioned that, ever since the family member had the ND, their leisure had been reduced, but they maintained some activities both at the family level and with people outside the family:
What we are seeing is dependence, not the sick person’s dependence but the families’. The families become so totally absorbed, and their dedication is so exclusive that they give up what they used to do, their friendships, their outings, their cultural activities, their leisure time.
My eldest son says Mom, I will give you 4 hours on Tuesday for you to go to the hairdresser or out with a friend…
Although the care of the person with ND was perceived as highly demanding in terms of time, the good disposition of the other members of the family provided some respite for the main caregiver who devoted more daily time to the person with ND.