Table 2.18: R-square estimates (3rdvariant)
Observed variable Estimate
These three variants have been constructed by making some assumptions in order to consider several possible cases for our functionings. It would be difficult to choose one variant out of the three as being “the best” since the goodness of fit measures are similar and the differences between the three variants are found in the exogenous variables that are retained. For example, if we were interested in minimizing the assumptions for our theoretical framework the first variant would be preferred at the cost of the information about the value of having aid, which is not the case for the second and third variant. Finally, there will be a trade off when it comes to selecting one of the variants, an important consideration for our work, but it is not an objective to stick only with one.
2.10 Alzheimers vs Non-Alzheimers
In this section we will outline the differences (in terms of our capabilities) between both sub-populations, Alzheimers and Non-Alzheimers, and describe some dispar-ities within each group. We will do this only for the first variant since the results for the other variants do not bring anything new that can not be seen with the first one.
Figure 2.3 shows boxplots of Autonomy in self care for the first variant. It is easier to observe the non-asymmetry of Non-Alzheimers with an important group of outliers for the lower capability values. On the contrary, Alzheimers prove to be much more symmetric but with a smaller interquartile range and in presence of outliers on both whiskers. Let us remember that Alzheimer’s disease is a progressive (several stages of the disease) and degenerative brain disease that is characterized by its diversity of expression (large group of symptoms and different consequences) from patient to patient, and that it predominantly affects cognitive functions. Our
results support this since we can see that Alzheimers have different capability levels, with an important degree of diversity, and that sufferers can be in a very evolved or degraded situation (outliers).
Figure 2.3: Boxplots of F1 for Non-Alzheimers and Alzheimers (1stvariant)
−2024
Non−Alzheimers Alzheimers
F1
According to figure 2.4, one can say the same about F2 and F1, except that the number of outliers seems to have decreased for Non-Alzheimers and to have in-creased for Alzheimers. One can note that even outliers of Alzheimers who are in a very good situation remain below the third quartile of Non-Alzheimers.
We tested equality of distributions (between Alzheimers and Non-Alzheimers) for both capabilities by using a Kolmogorov-Smirnov test. The null assumption of this test means that both of the considered samples are drawn from the same distribution. Our results showed the rejection of the equality at 1 % level for both capabilities and for the three different variants, thereby confirming what was already seen in our graphs.
2.10. Alzheimers vs Non-Alzheimers
Figure 2.4: Boxplots of F2 for Non-Alzheimers and Alzheimers (1stvariant)
−2024
Non−Alzheimers Alzheimers
F2
Table 2.19: Summary statistics of number of impairments by type in %
Values Non-Alzheimers Alzheimers
0 4.5 0.6
1 21.9 7.0
2 29.5 15.3
3 27.8 35.0
4 14.0 32.1
5 2.2 9.7
6 0.1 0.3
Figures 2.5 and 2.6 show cumulative distributions for Non-Alzheimers and Alzheimers for F1 and F2 respectively. Non-Alzheimers were split into groups according to the number of impairments by type, namely: movement, visual, hearing, speech, psy-chological, and others. Having noted that a person can have from zero to six types of impairments (see table 2.19), we accordingly divided the Non-Alzheimers popu-lation into seven groups, and we compared their cumulative distribution functions of F1 and F2 with those of Alzheimers 15. These graphs show that all cumula-tive functions of Non-Alzheimers from zero to five types of impairments and for both capabilities are strictly below the Alzheimers cumulative function. Thus, for
15AD denotes Alzheimers and NON AD k denotes Non-Alzheimers withktypes of impairments withk= 0, ...,6.
a given capability, Alzheimers are more likely to find themselves below this value than Non-Alzheimers, even when conditioning by the number of impairments from zero to five. On the contrary, when Non-Alzheimers have the six types of im-pairments the situation is distinctive and the two functions overlap. It should be noted that Non-Alzheimers with this amount of type of impairments constitute only 0.1%. In other words, only Non-Alzheimers with the most degraded situation (six types of impairments) would have a similar behavior to Alzheimers in terms of our estimated capabilities.
This is a strong result indicating the profound impact Alzheimers disease has on persons aged 60 and above living in France. Not only do they have a lower range of capabilities, but they are also confined to a smaller set of choices and opportunities.
As predictable as these results may seem, studies to date have failed to address the problem or highlight these relationships.
Figure 2.5: Cumulative distribution function of F1 for Non-Alzheimers by number of impairments by type and Alzheimers (1stvariant)
0.2.4.6.81F(F1)
−2 0 2 4
F1
AD NON_AD_0
NON_AD_1 NON_AD_2
NON_AD_3 NON_AD_4
NON_AD_5 NON_AD_6
2.11. Conclusions
Figure 2.6: Cumulative distribution function of F2 for Non-Alzheimers by number of impairments by type and Alzheimers (1stvariant)
0.2.4.6.81F(F2)
−2 0 2 4
F2
AD NON_AD_0
NON_AD_1 NON_AD_2
NON_AD_3 NON_AD_4
NON_AD_5 NON_AD_6
For the three variants and both capabilities, outliers on the top of the graphs had similar characteristics and can be mostly described as: female, not limited by a health problem, in good health, experiencing few cognitive troubles, tending to have at least one living child, living as a couple, capable of leaving home at least once a week, able to access all places without difficulty and walk and use public transport. Also, for the three variants and both capabilities, outliers of the bottom of the graphs can be mostly described as: female, very limited by health problems, in poor health, experiencing cognitive troubles, suffering from chronic diseases, and likely to have at least one living child (but proportionally less likely to have a living child than the outliers of the top). The majority also live as part of a couple, around half do not have professional caregivers, are of low equivalent income, do not leave their home on a regular basis, and experience access difficulties. In sum, in terms of similarities, the two groups of outliers both tend to be females, living as a couple with at least one living child but they differ greatly in terms of their health status, mobility, access to infrastructure, and income.
2.11 Conclusions
In this chapter we operationalized Sen’s capability framework by using a latent variable model approach that uses measurement and structural equations and es-timates both parts at the same time. We applied this framework to find a measure
ofAutonomy in self care andParticipation in the life of household for individuals aged above 60 and living at home in French territories.
We made several assumptions for the functionings, which led us to keep three vari-ants of the model and carry out the estimations for all of them. Our results showed that capabilities have a positive and significant impact on outcomes and that they are determined by economic, social, demographic and health-related factors. The latter were found to be the most influential for all three variants. By using the capability approach we were able to highlight the ways in which people organize their social relations, providing rich descriptions of reality (household size, living with others and having children) rather than a classical economic approach.
We compared the estimated capabilities and were able to find relevant differences in terms ofAutonomy in self care as well asParticipation in the life of the house-hold between Alzheimers and Non-Alzheimers. By looking at the capabilities, Alzheimers are clearly more disadvantaged than Non-Alzheimers and thus should not be treated “like the others”, while AD should be distinguished from other types of impairment. We identified disparities not only between these two groups but also within them. Alzheimers have more homogenous behavior than Non-Alzheimers, which could be split in two different sub-populations. Nevertheless, an important dispersion exists for Alzheimers, showing that we cannot describe a person with AD in a unique way; we must consider AD sufferers on an individual basis as there are several situations with different consequences for people with AD.
The capability approach gives special consideration to a person’s diversity. This implies defining the space of capabilities of the sick persons: what is possible, what is the influence of the illness on this space? Why, how, and according to which main criteria do they call upon institutional mechanisms of support? Can they convert resources and social rights into a life they value and, if so, how? The operationalization of the capability approach by the HSM survey shows that a considerable proportion of the AD population are disadvantaged both in terms of autonomy in their personal care tasks and in their participation in household life. We also demonstrated that, regardless of its cause, increased dependency (limitations in daily activities) is a source of deprivation of capabilities, and persons with AD are dependent persons. However, there is a specific effect of Alzheimer’s disease and affected individuals are not “ordinary” dependent persons. This illness sets them apart and puts them at a disadvantage when compared with other persons living at home with whom they share sources of deprivation, such as advanced age or level of dependency. This comparative disadvantage brings into question both the efficacy and fairness of the French Alzheimer policy, which is built on the existing features of a global and undifferentiated public policy towards dependency. If the disadvantages associated with AD are to be minimized through public programs, a first step is to accurately and comprehensively evaluate the living conditions of persons with AD.
Within the capability approach framework, health and disabilities are usually con-ceptualized as conversion factors which can lead to exacerbated deprivation. This
2.11. Conclusions was confirmed by our empirical work. But to evaluate the living conditions of per-sons with AD within the capability framework, conceptualizing AD as a conversion factor seems insufficient due to the peculiar link between the disease and the agency or the identity of the sick person. Spouses or children of AD sufferers insist on the dimension of identity loss linked to this disease more than the loss of customary practices and competencies. They stress the need to recognise and respect what was formerly important for the sick person. Reference is often made to the daily routine and the values and preferences the sick person enjoyed prior to the onset of AD. These points of reference often justify agreed-upon adjustment strategies which aim to maintain personal habits and important routines wherever possible.
One has to recognize from a theoretical standpoint, that mobilizing the capability approach to evaluate living conditions and capabilities of persons with degenera-tive cognidegenera-tive conditions poses very complex and specific challenges if one wants to appropriately address issues related to agency and, more generally speaking, the individual identity of the persons affected.
From the beginning our intentions were not to corroborate a theory but instead to study our selected population in greater depth using the available data. In particular, we hoped to provide new insights for people with Alzheimer’s disease.
Further analysis could be made by conducting a more in depth study of Non-Alzheimers as well as the outliers for the two groups, and to consider an eventual pseudo-panel data analysis.
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