Keeping Things in Balance: Family Experiences of Living With Alzheimer’s Disease

Esandi, Nuria; Nolan, Mike; Alfaro‐Díaz, Cristina; Canga‐Armayor, Ana

doi:10.1093/geront/gnx084

Cited by 21 publications

(23 citation statements)

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“…In addition, how families negotiated and agreed (or not) their roles and responsibilities in response to AD required considerable family work to maintain a balance (Esandi et al, 2018). In the present study, it is easy to see how families who had initially close relationships that remained close could “work together” (Keady & Nolan, 2003, p. 29), as could those whose relationship were initially more distant but become closer.…”

Section: Discussionmentioning

confidence: 99%

“…Within this context, families strive to balance the demands of providing the best care for their relative while maintaining the personal, social, and working life of the family (Quinn et al, 2015). But “keeping things in balance” (Esandi et al, 2018, p. e56) is no easy task and families often struggle to maintain a life outside of AD. The extent to which they are able to largely depends on families collectively agreeing how to redefine their roles and maintain supportive and cohesive family interactions and dynamics (Deist & Greeff, 2017; Esandi et al, 2018; Keady & Nolan, 2003; La Fontaine & Oyebode, 2014).…”

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confidence: 99%

“…Not surprisingly, professional support has been focused quite narrowly on the person with AD and their primary carer, with most attention being given to the instrumental aspects of care (Esandi & Canga, 2014; Nolan et al, 2008), and the wider emotional and relational needs of the family being given scant attention. Families often “feel abandoned” (Esandi et al, 2018, p. e64) as a consequence.…”

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confidence: 99%

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Family Dynamics and the Alzheimer’s Disease Experience

et al. 2021

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Using constructivist grounded theory, this study explored how family groups respond to Alzheimer’s disease in its early stages. Seven family units ( N = 22) participated in a series of 26 longitudinal interviews and 14 other family caregivers took part in three focus groups at a later stage for refinement and verification of the findings. Data analysis revealed four types of family dynamics: close dynamics at the start that were maintained throughout the experience, close dynamics at the start which became conflicting, conflicting dynamics at the start which remained problematic, and conflicting dynamic at the start which became closer over time. Factors such as prior relationships and family history, motivation to care, family organization, communication, and the family vision for future shaped the development of these dynamics. This theory of family dynamics in Alzheimer’s disease has the potential to inform the development of more adequate early interventions for families living with the illness.

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Section: Discussionmentioning

confidence: 99%

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Family Dynamics and the Alzheimer’s Disease Experience

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“…El perfil sociodemográfico del cuidador más frecuente corresponde a una mujer, de 60 o más años, es decir, una edad en la que aparecen problemas de salud crónicos y un deterioro natural de la estructura física de la persona y que cuidan de sus parejas o de sus progenitores; que debe ejercer el rol de cuidadora de su familiar durante un período que en promedio durará un año antes del desenlace fatal de su familiar. Este perfil de cuidador sigue las mismascaracterísticas que los estudios consultados (19)(20)(21)(22). A mayor edad del cuidador mayor posibilidad de padecer afecciones físicas.…”

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Calidad de vida en los cuidadores familiares de pacientes con enfermedad terminal, bajo un programa de cuidados paliativos domiciliarios

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2017

Rev. Salud Pública (Córdoba)

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Introducción: La calidad de vida de los cuidadores de pacientes en fase terminal, puede verse seriamente afectada. Algunos autores señalan que los cónyuges de pacientes con enfermedades terminales pueden pasar hasta 100 horas semanales abocados a su atención, esa situación puede comprometer la salud física, psicosocial y el bienestar espiritual del cuidador. Esta dimensión es de fundamental importancia para gestionar el cuidado de los pacientes con enfermedad terminal de manera integral.Objetivo: Analizar la calidad de vida en los cuidadores familiares de pacientes con enfermedad terminal, bajo un programa de cuidados paliativos domiciliarios en un hospital de gestión privada de la ciudad de Córdoba en el período diciembre 2015-abril de 2017.Metodología: Se realizó un estudio descriptivo y transversal en familiares cuidadores de pacientes ingresados en el Programa de Atención Domiciliaria del Hospital Privado de Córdoba. La muestra fue no probabilística de 310 pacientes y sus familiares cuidadores. El instrumento aplicado para medir calidad de vida relacionada a la salud fue el SF-36. Se realizaron análisis descriptivos exploratorios e inferenciales multivariados.Resultados: Se identificó un perfil de cuidador que es mujer de más de 60 años de edad, que es esposa o hija del/la paciente y que en promedio ejerce esa función por un año. Los cuidadores de 60 o más años tienen menos percepción de la calidad de vida que los cuidadores menores de 60 años en las siguientes dimensiones: rol físico, vitalidad, dolor, salud general, función física, y por último en ambos componentes sumarios de la escala: el físico y el mental.Conclusión: Se puede afirmar que independientemente del tipo de patología y del tiempo que pueda estar internado el paciente en atención domiciliaria, la edad de los cuidadores [a partir de los 60 años] es un factor importante para la afectación de las dimensiones señaladas de la calidad de vida.

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“…Given the importance of the CG's understanding of the PWD's care values for care planning, and the relatedness of incongruence to the dyad's relationship quality and individual well-being, the ability to characterize a more incongruent sub-group of family care dyads, and distinguish dyads that are at higher risk for belonging to it, would help focus efforts around improving dementia care planning in clinical settings. Several qualitative studies have identified typologies or archetypes in family care dyads, which helps organize and advance the science of dementia care both theoretically and clinically (Bangerter, Griffin, Zarit, & Havyer, 2017;Clemmensen, Busted, Soborg, & Bruun, 2016;Esandi, Nolan, Alfaro, & Canga-Armayor, 2017). The purpose of this study was to characterize distinct patterns (i.e.…”

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confidence: 99%