Love between couples living with Alzheimer's disease: narratives of spouse care-givers

Abstract

The aim of this interdisciplinary study is to describe and analyse the meaning of love in relationships between couples living with Alzheimer's disease (AD). Despite the wealth of studies describing relationships in the face of AD, little is known about the experience and changing meaning of ‘love’ between spouses when one of them is suffering from AD. A qualitative narrative approach was used to capture what love means for couples when one spouse is living with AD. A combination of open discussion along with a semi-guided interview was conducted with N = 16 spouses of persons living with AD. Data were analysed using Thematic Analysis. A leading theme that emerges from the interviews is that AD provides a significant indicator of the meaning and understanding of the experience of love. Five major types of relationship developments occurred after the disease emerged: love died, love became weaker, love did not change, love was enhanced and the spouse fell in love again. The need for further research is discussed. The findings of this study offer an additional perspective to the existing literature, thereby providing a more comprehensive outlook on marital relationships within the context of AD.

Too late for love? Sexuality and intimacy in heterosexual couples living with an Alzheimer’s disease diagnosis

“…These negotiations also involve the intimate sexual relationship; existing research has shown that the care burden of spouses negatively impacts their well-being and leads to a decrease in sexual desire and affection, particularly for women (Davies et al, 2010;Dourado et al, 2010;Harris et al, 2011;Simonelli et al, 2007;Wright, 1998). But there are also qualitative research that suggests that a committed relationship may contribute to couples' continued, or even increased, intimacy, touch and feelings of love and togetherness in the context of dementia (Baikie, 2002;Hayes et al, 2009;Shavit et al, 2017;Wright, 1998;Youell et al, 2016). The vast majority of research on couples living with dementia has focused on spousal care.…”

Experiences of oldest-old caregivers whose partner is approaching end-of-life: A mixed-method systematic review and narrative synthesis

“…Three qualitative studies conducted serial interviews [82,83] including an ethnography lasting 13 months [84]. The feminist quality of included papers was low despite the frequent focus on the differences between genders: only six studies engaged with the gendered construction of care [83,[85][86][87] and only two did so to a high standard [88,89].…”

“…Participants were caring for spouses with a range of end-of-life conditions with six studies focusing exclusively on care-recipients with end-stage dementia [82,[85][86][87][88]91] six on advanced frailty [77,78,83,90,93,94], and the rest focusing on care-recipients who had died. Both the age of the care recipient and the length of care were inconsistently reported with eight and 10 studies respectively not providing this information.…”

“…Central to this was caring for their partner at home [82,83,91,92], which they often did with little formal or informal support [77,82,85,86,88]. Nevertheless, as their partner's approached end-of-life, caregiving spouse's found it difficult to maintain aspects of their self and marriage identities [82,86,87,91,92]. On a practical level, caregivers had to perform more care and modify their house and social life in unfamiliar ways [82,91].…”

Casamento E Cuidados Com O Cônjuge Com Demência: Um Estudo Transcultural Brasil-Portugal

“…Conforme Daley et al (2017), os cônjuges cuidadores de idosos com DA também se beneficiam da ideia 'até que a morte nos separe' e do sentimento de compaixão que vivenciam ao exercerem as tarefas de cuidado, favorecendo altos níveis de emoções positivas.O amor de companheirismo se transforma em amor compassivo por uma pessoa doente que precisa de cuidados (Shavit, Ben-Ze'ev, & Doron, 2017). Os achados de Monin, Schulz e Feeney (2015) também indicaram que os cônjuges cuidadores que sentiam mais amor compassivo por seus companheiros com DA tinham menos fardo ao cuidar e expressavam avaliações mais positivas diante do papel de cuidar, além de terem maior bem-estar psicológico.…”