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Living with a well-known stranger: Voices of family members to older persons with frontotemporal dementia
Sophiahemmet University.ORCID iD: 0000-0002-9589-2560
Sophiahemmet University.ORCID iD: 000-0003-3204-6583
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2019 (English)In: International Journal of Older People Nursing, ISSN 1748-3735, E-ISSN 1748-3743, article id e12264Article in journal (Refereed) Epub ahead of print
Abstract [en]

AIM: To describe family members' experiences of living with persons with neuropsychiatric symptoms (NPS) related to frontotemporal dementia (FTD).

BACKGROUND: The majority of persons with dementia during the disease trajectory develop NPS. Persons with FTD are likely to develop greater levels of NPS than persons with other types of dementias. Research-based knowledge regarding family members' experiences of living with persons with FTD and NPS is limited.

METHODS: Nine family members of persons with FTD were interviewed. Interviews commenced with completion of the Neuropsychiatric Inventory (NPI). Upon completion of the NPI, questions were posed from an interview guide where study participants provided in-depth information about NPS identified. Interview data were analysed using qualitative content analysis.

RESULTS: Interviewed family members highlighted that persons with FTD had developed between four and eight co-existing NPS. Irritability and disinhibition were the most common NPS, with variations in severity, frequency and distress. From the interview data, two themes emerged: Living with a well-known stranger and Coping and overstepping social norms.

CONCLUSIONS: Living with a well-known stranger depicted a new co-existence with a loved one with changes in personality and behaviour, which were not inherent to the person or predictable any more. The presence of NPS can threaten the safety of the person with FTD and their family in real world and on social media. Support offered should focus on the person's physical and psychological needs, not on a diagnosis.

IMPLICATIONS FOR PRACTICE: From a health care perspective it is important to see the person with FTD and their family as unique individuals with specific needs.

Place, publisher, year, edition, pages
2019. article id e12264
Keywords [en]
content analysis, dementia, family
National Category
Nursing
Identifiers
URN: urn:nbn:se:shh:diva-3480DOI: 10.1111/opn.12264PubMedID: 31577392OAI: oai:DiVA.org:shh-3480DiVA, id: diva2:1365392
Available from: 2019-10-24 Created: 2019-10-24 Last updated: 2020-03-11Bibliographically approved
In thesis
1. Voices to remember: Persons' and family members' experiences of living with neurocognitive disorders and related symptoms
Open this publication in new window or tab >>Voices to remember: Persons' and family members' experiences of living with neurocognitive disorders and related symptoms
2020 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Persons with cognitive impairment are often encouraged by society and family to seek a cognitive assessment and receive a timely dementia diagnosis (dementia is also known as a major neurocognitive disorder). A cognitive assessment can help recognise possible reversable causes of cognitive symptoms and/or the presence of other neurocognitive disorders or diseases. It can take up to three years from the time a person experiences the first cognitive symptom, to contacting health care and referral for a cognitive assessment. Most persons with dementia develop neuropsychiatric symptoms such as; hallucinations, apathy, agitation during the course of the disease. The presence of these symptoms often impacts negatively on the person and family members and are trigger factors for admissions to residential care. These symptoms are often under-identified in health care. Knowledge gaps exist about persons’ experiences of a cognitive assessment and neuropsychiatric symptoms early in the disease trajectory. Many persons with dementia reside in their own homes with a family member. Further knowledge is required regarding the person’s and family members’ experiences of the situation. The aim of this doctoral thesis was to describe older persons’ and family members’ experiences of living with neurocognitive disorders and related symptoms in a community setting.

Study I an interview study with 23 persons with cognitive impairment who had commenced a cognitive assessment. An interpretive description data-analysis was carried out. The findings are presented under four themes; Conflicting views between the person and their family about severity of the situation, Identifying the presence of neuropsychiatric symptoms, Compensating strategies used to remember and Worries about self and what the future holds.

Study II a follow-up interview study (to study I) with 18 persons who had completed a cognitive assessment in a polyclinical setting. Interpretive description was used to analyse the interview data. The findings formed two main themes. The first theme focuses on levels of trust in the process and the second theme about attempts to understand and make sense of a neurocognitive diagnosis.

Study III an interview study with 14 spouses to partners with dementia and neuropsychiatric symptoms. The persons with dementia were reported as having between five to eight neuropsychiatric symptoms at the same time. The theme “Living on the edge, lacking support and time for self” represented the findings of this study.

Study IV an interview study with nine family members to persons with frontotemporal dementia and neuropsychiatric symptoms. Persons with frontotemporal dementia were reported as having between four to eight co-existing neuropsychiatric symptoms. Two themes emerged from the data; “Living with a well-known stranger and Coping and overstepping social norms.”

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet, 2020. p. 66
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-3622 (URN)978-91-7831-724-0 (ISBN)
Public defence
2020-03-06, Weitnersalen, Sophiahemmet Högskola, Valhallavägen 91, hus R, plan 2, Stockholm, 10:00 (English)
Opponent
Supervisors
Available from: 2020-03-11 Created: 2020-03-11 Last updated: 2020-03-11Bibliographically approved

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