Dementia care‐giving from a family network perspective in Germany: A typology

Abstract

Sustaining informal care-giving for people living with dementia (PWD) is a common objective of societies worldwide. Families can contribute substantially to the support of care-giving relatives. However, a deeper understanding of the impact of informal care-giving for PWD on family life is needed. Interviewing of multiple family network members-in addition to the primary carer-provides more insight into familial contexts of care-giving. This pilot study aims to explore how informal carers reconcile dementia care-giving and family life from a family network perspective. Therefore, we conducted 14 narrative interviews with family carers from seven care-giving networks in Germany, which we interpreted using the documentary method. The yielded relational typology describes five types of family carers of PWD. These types reflect the way the families deal with dementia care-giving based on the interrelation between relationship quality and the distribution of care-giving tasks within the family.Depending on the constellation of this interrelationship, family carers either experience care as a joint project, as co-operation with external support or within the family, as disappointment or as a predicament without alternatives. Finally, if the care-giving tasks are not shared, or if the distribution is perceived as unequal, relationship break downs can occur, especially in family ties that are already strained. However, joint care-giving and strong ties can also bring the family closer together and enhance care experiences. Care professionals and social workers should be aware of the family network of dementia carers and support the development of a sense of family unity. This can contribute to positive care experiences among family carers and thus increase the maintenance of informal dementia care.

Balancing care demands and personal needs: A typology on the reconciliation of informal dementia care with personal life based on narrative interviews

“…Being able to preserve boundaries and to keep the influence of care on their personal lives at a low level depends on several conditions. Some of the carers have an advantaged care network which is characterised by, for example, a harmonious relationship between the network members who share care tasks or by having special expertise regarding the administration of care (Neubert et al, 2020a, 2020b). Moreover, the cared-for person’s preferences, character traits and extent of dementia support the reconciliation of informal care and personal life. All three of us, well I found that conversations or visits for more than half an hour are no longer possible.…”

“…In this type, which is made up of two adult-child primary carers, the negotiation is focussed on the emotional processing of the crisis. Factors that contribute to the imbalance between personal needs and care demands and influence the negotiation between them are a conflict-loaded relationship to other family members and the unshared or unequally shared distribution of responsibilities between family members (Neubert et al, 2020b). The carers are oriented towards the need for (psychological) help and self-reflection to, for example, understand the nature of dementia and the reasons for their overload. Then you can’t really; I’ll say it like this, above all if you don’t reflect and process, so that means ((breath)) such care also needs a stable person, I think; and if not then you break down with such care, […] I absolutely and totally urgently need more sessions [psychotherapy] because there is so much I want to get off my chest and want to understand why are they all leaving ?…”

“…Process type 2a comprises three primary carers (two adult-children and one spouse) who cohabitate with the person with dementia. Although the intrafamily distribution of responsibilities is unshared or unequal, they are in agreement with the perceived intra-family relationship quality (Neubert et al, 2020b). The negotiation process of this type is strategic.…”

“…With the term 'personal life', we refer to a person's personal daily routine, personal interests, ideas and visions about one's life, as well as to internal/emotional aspects linked to these aspects. In the current study, we deliberately did not focus on the areas of family and employment since these were reported elsewhere (Neubert et al, 2020a(Neubert et al, , 2020b.…”

Typology of informal carers providing care to family members after cerebrovascular accident

“…accompanying care recipients, looking after them, helping with the household, and the like). The German typology created recently (Neubert et al, 2020) reflects the ways in which care is divided among family members caring for people with dementia -the families' approaches form an imaginary scale running from "we stick together" to "there's no other possibility". However, these typologies do not take into account the carers' experiences and feelings and their self-reflection -which is the focus of other, qualitative research (e.g.…”