Voices of Spouses Living with Partners with Neuropsychiatric Symptoms Related to Dementia

Abstract

Persons with dementia, who reside in their own homes, are often cared for by family members. The presence of a family career is said to have a protective effect, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory also known as neuropsychiatric symptoms. Quality of life for both the person with neuropsychiatric symptoms and their careers are affected, increasing suffering and risk for hospitalisation and admission to long-term residential care. Family careers to persons with dementia have identified behavioural changes as more distressing than cognitive impairment leading to increased burden of care and admissions to residential care. Knowledge gaps exist regarding how family careers living with persons with dementia experience neuropsychiatric symptoms in a community setting. The aim was to describe spouses' experiences of living with partners who have developed neuropsychiatric symptoms related to dementia in a community setting. Semi-structured interviews were carried out with 14 spouses of partners with dementia. The interviews included completion of the neuropsychiatric inventory. Interview data were analysed using a content analysis approach. The results showed that spouses identified in the neuropsychiatric inventory that partners with dementia had on average five to eight co-existing symptoms. Frequency, severity and distress varied. From the narrative data, the theme living on the edge lacking support and time for self, emerged. The findings of this study suggest that support offered to persons with dementia and their spouses should have a person-centred approach meeting individual needs. Safety and welfare of persons with dementia and their spouses residing in their own homes may be jeopardised in the presence of neuropsychiatric symptoms. A greater awareness is required in the community regarding the well-being of these persons.

Being ‘alone’ striving for belonging and adaption in a new reality – The experiences of spouse carers of persons with dementia

“…Research has found that spouse carers of persons with dementia can report a quality of life that is lower than the person for whom they care (Wadham et al, 2016), and commonly perceive their caring responsibilities as too overwhelming to maintain (Swedish Family Care Competence Centre, 2014). Furthermore, research has shown that carers often do not receive the type of support they want and need (Phillipson, Jones, & Magee, 2014;Tyrrell, Hilleras, Skovdahl, Fossum, & Religa, 2017). In their review of research on spouse carers of persons with dementia, La Fontaine and Oyebode (2014) concluded that the marital relationship is often strained, the carer can feel trapped in their situation, lonely, lacking in support and have no time to take care of their own health.…”

“…In addition, spouse carers report feeling that they are losing their partner due to difficulties in sharing thoughts, emotions and experiences, leading to reduced intimacy and a sense that they are no longer married (Eloniemi-Sulkava et al, 2002;Kaplan, 2001;Pozzebon, Douglas, & Ames, 2016). Tuomola, Soon, Fisher, and Yap (2016) found that spouses reported insufficient rest, guilt, a loss of sense of self and an acceptance of their caring role as their destiny, while Tyrrell et al (2017) found that due to the person with dementia's need for constant supervision, spouses' social life and recreational activities were significantly reduced. Other research has similarly found that the lives of spouse carers of persons with dementia become so focused on their caring role that they abandon leisure activities and social relations leading to isolation, distress, self-criticism, guilt, depression and lower life satisfaction (Liu et al, 2017;Pertl, Lawlor, Robertson, Walsh, & Brennan, 2015;Wawrziczny, Pasquier, Ducharme, Kergoat, & Antoine, 2017).…”

Care of family caregivers of persons with dementia (CaFCa) through a tailor-made mobile app: study protocol of a complex intervention study

“…Support with daily living, navigating the healthcare system, emotional support, and coping strategies are important issues for family caregivers. Research from Sweden suggests adoption of person-centred approach to meet individual needs of family caregivers of PWD who experience lack of support in dealing with the behavioural and cognitive changes in the PWD that they care for, and their own sense of vulnerability and isolation [13].…”

Unintended Consequences: Intimate Partner Violence, Military Caregivers, and the Law

“…All in all, spousal caregivers to partners with dementia who display aggressive behaviors ultimately report feeling a lack of support, isolated, and vulnerable (Tyrrell, Hillerås, Skovdahl, Fossum, & Religa, 2016). Existing research about these civilian caregivers' experiences with, interpretations of, and responses to violence in the caregiving relationship is a helpful supplement to how military caregivers might interpret and respond to violence in situations with their veterans.…”