The quality of the relationship perceived by spouses of people with young-onset dementia

Abstract

Background: Young-onset dementia (YOD) has a profound impact on spouses. However, little is known on how the quality of the relationship changes over time in YOD. This study aims to determine how the quality of the relationship changes over time and identify predictors of this change. Methods: This study used data from the NEEDs in Young onset Dementia (NeedYD) study. The primary outcome measure was the quality of the relationship perceived by spouses measured throughout 24 months. Baseline characteristics of persons with YOD and spouses were also measured to assess their predictive value. Results: Totally, 178 dyads were included. The perceived quality of the relationship deteriorated over time. A longer symptom duration, a diagnosis of frontotemporal dementia, lower levels of awareness of deficits, lower levels of initiative toward daily living activities, and higher levels of apathy, hyperactivity, depression, and anxiety in the person with YOD were associated with a lower perceived quality of the relationship by spouses. A coping style characterized by palliative and passive reacting patterns and higher levels of neuroticism in spouses was also associated with a lower quality of the relationship. Conclusion: The quality of the relationship as perceived by spouses deteriorated over time and was influenced by characteristics of the person with YOD as well as their spouse. Helping spouses to come to terms with factors that threaten their sense of couplehood might help them to develop a more positive attitude toward their spousal relationship and improve the quality of the relationship and care.

Trajectories of relationship quality in dementia: a longitudinal study in eight European countries

“…The decreasing carer RQ scores and the stable scores of person with dementia are in line with other studies (Bruinsma et al, 2020;Clare et al, 2012;Spector et al, 2016). Although family carers may try to maintain their previous RQ (Wadham et al, 2016), the caring process can be overwhelming and this may lead to the observed reduction in RQ (Egilstrod et al, 2019;Evans & Lee, 2014).…”

“…This is in line with previous evidence that informal support mechanisms may reduce the burden of caregiving (Del-Pino-Casado et al, 2018) and impact positively on RQ. A study with carers of people with young-onset dementia (Bruinsma et al, 2020) showed an association between 'seeking social support' and lower RQ. The authors suggested this might be due to reverse causality.…”

“…Evidence from longitudinal studies analysing the course and determinants of RQ is sparse. In young-onset dementia, RQ, as perceived by spouses, deteriorated over time (Bruinsma et al, 2020). Multiple factors were associated with lower RQ, including symptom duration, hyperactivity, apathy and less initiative toward performing daily living activities.…”

“…Some studies also suggest worse RQ is associated with outcomes such as challenging behaviours, cognitive and functional decline or institutionalization (Edwards et al, 2018;Norton et al, 2009). Research indicates that RQ is a dynamic process and may change, especially from the perspective of carers, as dementia severity increases (Bruinsma et al, 2020;Clare et al, 2012;Spector et al, 2016). It is therefore important to determine which factors protect RQ over time.…”

Effects of Phone-Based Psychological Intervention on Caregivers of Patients with Early-Onset Alzheimer’s Disease: A Six-Months Study during the COVID-19 Emergency in Italy

“…The early onset of dementia can exacerbate these aspects due to the premature impairment of family and social roles. Previous research showed that spouses of people with early onset AD (EOAD) precociously experienced negative changes due to responsibility shifting and social isolation [11]. Pressed by the dual care demand for both children and relatives, the members of the "sandwich generation" caregivers (i.e., the emerging cohort of caregivers, mainly represented by middle-aged women, who were caring for maturing children and aging relatives simultaneously) [12] frequently showed high level of burden, stress, and mood disorders, with family distress and higher risk of institutionalization [13], especially when behavioral-psychological symptoms occurred [14].…”