Socioemotional selectivity and psychological health in amyotrophic lateral sclerosis patients and caregivers: a longitudinal, dyadic analysis

Abstract

Objective-Socioemotional selectivity theory predicts that as the end of life approaches, goals and resources that provide immediate, hedonic reward become more important than those that provide delayed rewards. The present study tested whether these goal domains differentially affected psychological health in the context of marital dyads in which one partner had been diagnosed with amyotrophic lateral sclerosis (ALS), a life-limiting disease. Design-ALS patients (N = 102) being treated in 3 multidisciplinary clinics and their spouses (N = 100) reported their loneliness, financial worry, and psychological health every 3 months for up to 18 months. Main Outcome Measure-Psychological health composite. Results-In multilevel dyadic models, patients and spouses had similar levels of financial worry and loneliness. Both patients and spouses had worse psychological health with higher loneliness, but only spouses had worse psychological health with higher financial worry. Significant interactions with age and disease severity indicated that older spouses were more affected by loneliness than were younger spouses, and patients with less severe disease were more affected by financial worry than patients with more severe disease. Conclusion-The results provide good support for socioemotional selectivity theory's implications for psychological health in a strong test of the theory.

Loneliness as neurobehavioral issue in amyotrophic lateral sclerosis

“…Previous reports showed that the majority of ALS patients and caregivers experienced the loss of participation in regular activities, feelings of being “homebound” and disconnected from the community as disease progress 28 . These changes in social connections and reduced social activities 7,28 were associated with feelings of loneliness, poor QoL, severe depressive mood, and emotional distress 8,29 . In our sample, regression analyses documented the pivotal role of loneliness, over age and disease stage, on depressive symptoms of ALS patients (Table 4).…”

“…28 These changes in social connections and reduced social activities 7,28 were associated with feelings of loneliness, poor QoL, severe depressive mood, and emotional distress. 8,29 In our sample, regression analyses documented the pivotal role of loneliness, over age and disease stage, on depressive symptoms of ALS patients (Table 4). The P-values of chi-squared tests are reported.…”

Funcionalidade e qualidade de vida de pessoas com esclerose lateral amiotrófica e percepção da sobrecarga e apoio social de cuidadores informais

“…A preocupação com aspectos financeiros depende do estágio da doença, pacientes em estágio inicial aumentam a preocupação financeira, entretanto o avanço da doença e a sensação de proximidade da morte influencia, diminuindo o valor atribuído aos recursos financeiros. 20 O apoio social funcional é um conceito subjetivo, que diz respeito às percepções do indivíduo sobre a sua própria disponibilidade de suporte. Os dados indicam que para a amostra estudada, há uma maior percepção da existência de pessoas em sua rede social que lhes amem (Apoio afetivo) e com quem podem ter momentos de prazer e relaxamento (Interação Social), e apoiar-lhes com medidas práticas (Apoio Material).…”

“…25 A literatura evidencia que pacientes com ELA e seus cônjuges não diferem em relação aos níveis de percepção de solidão, o que reflete em preocupação com a adequação das relações sociais próximas. 20 Um corpo moderado de evidências demonstra que cuidadores, que experimentam sintomas depressivos, são mais propensos a apresentar alta sobrecarga. 18 Apesar da escassez de estudos sobre o apoio social nos cuidadores dos pacientes com ELA, e de nossa pesquisa não ter utilizados avaliações específicas para mensuração de sintomas depressivos.…”

Understanding the Economic Value and Impacts on Informal Carers of People Living with Mental Health Conditions

“…Carers are also known to be at higher risk of loneliness compared to the general population [ 28 , 29 ], but there has been limited research looking at the experience of informal carers of people with mental health problems. We therefore looked at the potential association between experiences of caring and levels of loneliness, measured using the brief 3-item version of the University of California, Los Angeles (UCLA-3) loneliness scale [ 30 ].…”