The Positive Aspects of Caregiving Despite the BPSD: A More Comprehensive View of the Experience of Providing Care

Notwithstanding the negative impacts of dementia caregiving, “positive” aspects have also been highlighted. These consist, for instance, of finding meaning through caregiving [21], feeling gratified by being able to help a loved one (whether due to reciprocity or not), or strengthening relationships with others. Caregivers who report positive aspects are less likely to be burdened or depressed [22], but negative and positive experiences coexist [23]. Positive aspects also include the family as a natural resource that enhances (or spares) many clinical interventions. Caregiving models must therefore go beyond acknowledging “burden” and should consider additional factors and refinements. Most research has not focused on how caregivers respond or adapt to patient BPSD over time [4]. Such a longitudinal perspective may convey a more complete picture of the impact of BPSD on caregivers’ outcomes than the consistently negative one reported in cross-sectional analyses.

The notion of burden (a pervasive concept when discussing family issues in chronic disease) has long been questioned. First in the field of schizophrenia, where the concept of family burden was pioneered [24, 25], due mainly to the deinstitutionalization movement in Europe and the US. In fact, broader, less stigmatizing, and negatively imbued terms such as the experience of caregiving have been proposed [26], and the discussion on the limitations of the burden concept (in isolation) has spread to the dementia field. Figure 15.1 outlines major aspects of the experience of caregiving in dementia (as in other chronic conditions). It also evokes the distinction between objective and subjective burden, discussed first in schizophrenia [25, 27] and later in relation to other chronic disorders. Objective burden refers to negative consequences of caregiving that are more tangible and quantifiable. Subjective burden, related to how the burden of care is perceived by the caregiver,

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Aspects of the experience of caregiving [30]. (Adapted with permission from Gongalves- Pereira and Mateos [30])

Fig. 15.1 Aspects of the experience of caregiving [30]. (Adapted with permission from Gongalves- Pereira and Mateos [30])

is sometimes conceptualized as strain [12,27]. It can be further divided into subjective relationship burden and subjective stress burden, the former referring to how care is perceived to be overtly demanding and the patient manipulative, the latter to tension, anxiety, and depression stemming from the caregiver role [12, 28, 29]. The latter construct overlaps with psychological distress, which is not exactly equivalent to subjective burden, as it may be also related to other causes (e.g., caregivers with recurrent depressive disorder, in whom the caregiving experience is mainly a trigger or a perpetuating factor).

Of course the negative implications of talking about what or who is burdensome are largely unintentional, as this is meant to classify the disease, not the patient as a person; but one must be aware of the social implications of the construct. Perhaps the term burden pervades the field of dementia due partially to “malignant psychology” issues [31] and less awareness of the patient’s personhood. We will come back to this in the following section.

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