To What Extent Are Secondary Caregivers Important?

Most literature focuses on caregivers, namely, primary caregivers. Little attention is paid to the family as a whole, although in many families, the caregiving is shared [77]. Secondary caregivers are supposed to be less present and are more often care managers than direct providers. However, they may also be at risk and deserve to be assessed in some circumstances [78]. In the context of BPSD, family influences are difficult to understand if we only have access to the primary-caregiver/person-with- dementia interactions. As recognized in the NICE guidelines, the diagnosis does not just impact one person, but a whole family system [79].

A Word on Transcultural Issues

Throughout the text we have suggested that different cultures may view part of BPSD from particular perspectives. How research findings and explanatory models apply to specific contexts is therefore a matter of debate.

Cultural, racial, and/or ethnic factors can mediate determinants of caregiver burden while also contributing to BPSD [12, 80] . The way informal caregiving in dementia mixes with family life depends on cultural issues and varies to some extent across countries. In the developing world, the family is the most important, as health services are lacking and a stigma is a major issue.

The Family as the First Resource to Look For

Taking a salutogenic and “positive” approach, family strengths should be more explicitly acknowledged in both the literature and practice. Examples include prosocial family processes enhancing patients’ life satisfaction and, in the context of BPSD, coping constructively with challenging behaviors.

Family issues may not only predispose to, precipitate, or perpetuate some BPSD but can also be protective regarding them (a “4 Ps” model). Health professionals have been trained to mend what is wrong (and that’s fine), but not exactly to reinforce what is right. This continues to be true when it comes to working with families, as developed in the next chapter of this book.

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