Family Integrity Among Older Caregivers of Relatives With Dementia

Abstract

The construct of family integrity denotes that older persons' attainment of ego integrity is linked to family relationships. Family integrity is the positive outcome (overall satisfaction with life); disconnection (dissatisfaction) and alienation (estrangement) are the negative outcomes. This study focuses on elderly people who are primary caregivers of relatives with dementia, and examines their experience of events related to that role, which are perceived as being of influence on their sense of family integrity. The sample included 26 participants. Open-ended interviews were conducted. The interview transcripts were submitted to content analysis. The main findings suggest that caregivers who experience family integrity tend to embrace the new life demand associated with the caregiving role, while those tending towards disconnection struggle to maintain their pre-existing goals, and those experiencing alienation tend to feel helpless. Caring for a relative with dementia has an impact on multiple aspects of family life.

From older to younger: intergenerational promotion of health behaviours in Portuguese families affected by familial amyloid polyneuropathy

“…Mother → Daughter (25) Affected → Unknown (28) Mother → Son (16) Affected → Pre-symptomatic (12) Father → Daughter (8) Affected → Non-carrier (8) Father → Son (8) Affected → Affected (6) Aunt → Niece (7) Non-carrier → Affected (6) Aunt → Nephew (1) Non-carrier → Unknown (4) Uncle → Niece (3) Non-carrier → Pre-symptomatic (4) Uncle → Nephew (1) Non-carrier → Non-carrier (4) Grandmother → Grandson (2) Pre-symptomatic → Unknown (2) Grandmother → Granddaughter (1) Unknown → Pre-symptomatic (1) Grandfather → Grandson (2) Unknown → Affected (1) Female cousin → Female cousin (1) Male cousin → Female cousin (1) will shape the way they will be remembered by the younger generation. 16,30 The role of encouraging is mainly associated with the carrying out of the PST. In fact, the older protagonists that assume this role seem to consider that, for the younger individual, it is decisive to know their disease status because it will determine their health management and decisions in family life (such as the decision to have children or not).…”

“…This role underlines the families adaptive capacity, that is necessary when severe problems exist, and the reciprocity and mutuality that depicts intergenerational relationships. 16 The role of informing about the disease or the risk of having the disease is less frequent, and has emerged in the literature on hereditary diseases to describe that the older family members disseminate the family health history. 7,8,12,17,27 The older relatives have a lived and Table 4 Roles played by the older family members regarding the younger: kinship and disease status…”

“…In later life, older persons often wish to provide for future generations (generativity), which makes their involvement, in the health management of younger generations, foreseeable. 15,16 Indeed, recent research has examined what roles older generations play in terms of health promotion and risk management towards younger generations, and has mainly focused on conditions to which susceptibility genetic tests and preventative treatment options are available, such as hereditary cancers, diabetes or heart disease. These studies have shown that members from older generations are likely to act as screening encouragers and facilitators in the transmission of self-care knowledge for younger generations.…”

What do we know about older former carers? Key issues and themes

“…, Guerra et al . ). In contrast, higher levels of distress among bereaved older carers’ appear to be linked to specific negative care‐related influences including emotional strain, role overload, lack of support during caring and dissatisfaction with care‐giving (Boerner et al .…”

“…A number of influences on bereaved older carers' emotional well-being have been identified. A close relationship with the care recipient, 'good family functioning', higher levels of self-esteem, socio-emotional support and higher levels of education and income are all protective of the bereaved older carers' emotional well-being (Aneshensel et al 2004, Burton et al 2008, Guerra et al 2016. In contrast, higher levels of distress among bereaved older carers' appear to be linked to specific negative care-related influences including emotional strain, role overload, lack of support during caring and dissatisfaction with care-giving (Boerner et al 2004, Pruchno et al 2009).…”