title: 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.
authors.affiliation: Karolinska Institutet and Sophiahemmet University, Sweden.
authors.forename: Marie
authors.initials: M
authors.lastname: Tyrrell
authors.affiliation: Sophiahemmet University and Karolinska Institutet, Sweden.
authors.forename: Pernilla
authors.initials: P
authors.lastname: Hillerås
authors.affiliation: University College of Southeast Norway.
authors.forename: Kirsti
authors.initials: K
authors.lastname: Skovdahl
authors.affiliation: Sophiahemmet University and Karolinska Institutet, Sweden.
authors.forename: Bjöörn
authors.initials: B
authors.lastname: Fossum
authors.affiliation: Karolinska Institutet, Sweden.
authors.forename: Dorota
authors.initials: D
authors.lastname: Religa
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D000369:Aged, 80 and over; D003704:Dementia / Q000523:psychology*; D005260:Female; D006699:Home Care Services; D006801:Humans; D057187:Independent Living; D008134:Long-Term Care; D008297:Male; D008875:Middle Aged; D000066553:Problem Behavior; D011788:Quality of Life / Q000523:psychology; D018454:Spouses / Q000523:psychology*; D014831:Voice
keywords: community; dementia; neuropsychiatric symptoms; spouses’/partners’ experiences