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Living with dementia with Lewy bodies: an interpretative phenomenological analysis

Larsson, Victoria LU ; Holmbom Larsen, Axel LU ; Torisson, Gustav LU orcid ; Strandberg, Eva-Lena LU and Londos, Elisabet LU (2019) In BMJ Open 9.
Abstract
Objective To explore the subjective experience of living with dementia with Lewy bodies (DLB).

Design A qualitative study of in-depth interviews using interpretative phenomenological analysis.

Setting A memory clinic in Malmö, southern Sweden.

Participants A purposive sample of five male participants with DLB between the ages of 78 and 88 years and disease duration of 1.5–7 years.

Results Three themes were identified in relation to the participants’ experiences of living with DLB: (1) disease impact, in terms of symptom experience and restricted participation and activities; (2) self-perception and coping strategies; (3) importance of others, such as healthcare, family and friends.

Conclusions... (More)
Objective To explore the subjective experience of living with dementia with Lewy bodies (DLB).

Design A qualitative study of in-depth interviews using interpretative phenomenological analysis.

Setting A memory clinic in Malmö, southern Sweden.

Participants A purposive sample of five male participants with DLB between the ages of 78 and 88 years and disease duration of 1.5–7 years.

Results Three themes were identified in relation to the participants’ experiences of living with DLB: (1) disease impact, in terms of symptom experience and restricted participation and activities; (2) self-perception and coping strategies; (3) importance of others, such as healthcare, family and friends.

Conclusions This study provides a broad insight into the first-hand experience of living with DLB and how it compares with other dementia types. Findings highlight factors characterising the disease experience and well-being, and how persons with DLB address challenges arising secondary to disease. These findings are important for both research and clinical practice, demonstrating the feasibility of direct involvement of DLB persons in identifying important aspects of care, which include improved healthcare services. (Less)
Abstract (Swedish)
Objective: To explore the subjective experience of living with dementia with Lewy bodies (DLB). Design A qualitative study of in-depth interviews using interpretative phenomenological analysis. Setting: A memory clinic in Malmö, southern Sweden. Participants: A purposive sample of five male participants with DLB between the ages of 78 and 88 years and disease duration of 1.5-7 years. Results: Three themes were identified in relation to the participants' experiences of living with DLB: (1) disease impact, in terms of symptom experience and restricted participation and activities; (2) self-perception and coping strategies; (3) importance of others, such as healthcare, family and friends. Conclusions: This study provides a broad insight into... (More)
Objective: To explore the subjective experience of living with dementia with Lewy bodies (DLB). Design A qualitative study of in-depth interviews using interpretative phenomenological analysis. Setting: A memory clinic in Malmö, southern Sweden. Participants: A purposive sample of five male participants with DLB between the ages of 78 and 88 years and disease duration of 1.5-7 years. Results: Three themes were identified in relation to the participants' experiences of living with DLB: (1) disease impact, in terms of symptom experience and restricted participation and activities; (2) self-perception and coping strategies; (3) importance of others, such as healthcare, family and friends. Conclusions: This study provides a broad insight into the first-hand experience of living with DLB and how it compares with other dementia types. Findings highlight factors characterising the disease experience and well-being, and how persons with DLB address challenges arising secondary to disease. These findings are important for both research and clinical practice, demonstrating the feasibility of direct involvement of DLB persons in identifying important aspects of care, which include improved healthcare services. (Less)
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author
; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
BMJ Open
volume
9
article number
e024983
publisher
BMJ Publishing Group
external identifiers
  • scopus:85060919150
  • pmid:30700486
ISSN
2044-6055
DOI
10.1136/bmjopen-2018-024983
language
English
LU publication?
yes
id
88cfbbdd-9a6b-4c95-9076-d49618c1b183
date added to LUP
2019-01-30 10:18:34
date last changed
2022-07-19 07:52:00
@article{88cfbbdd-9a6b-4c95-9076-d49618c1b183,
  abstract     = {{Objective To explore the subjective experience of living with dementia with Lewy bodies (DLB).<br/><br/>Design A qualitative study of in-depth interviews using interpretative phenomenological analysis.<br/><br/>Setting A memory clinic in Malmö, southern Sweden.<br/><br/>Participants A purposive sample of five male participants with DLB between the ages of 78 and 88 years and disease duration of 1.5–7 years.<br/><br/>Results Three themes were identified in relation to the participants’ experiences of living with DLB: (1) disease impact, in terms of symptom experience and restricted participation and activities; (2) self-perception and coping strategies; (3) importance of others, such as healthcare, family and friends.<br/><br/>Conclusions This study provides a broad insight into the first-hand experience of living with DLB and how it compares with other dementia types. Findings highlight factors characterising the disease experience and well-being, and how persons with DLB address challenges arising secondary to disease. These findings are important for both research and clinical practice, demonstrating the feasibility of direct involvement of DLB persons in identifying important aspects of care, which include improved healthcare services.}},
  author       = {{Larsson, Victoria and Holmbom Larsen, Axel and Torisson, Gustav and Strandberg, Eva-Lena and Londos, Elisabet}},
  issn         = {{2044-6055}},
  language     = {{eng}},
  month        = {{01}},
  publisher    = {{BMJ Publishing Group}},
  series       = {{BMJ Open}},
  title        = {{Living with dementia with Lewy bodies: an interpretative phenomenological analysis}},
  url          = {{http://dx.doi.org/10.1136/bmjopen-2018-024983}},
  doi          = {{10.1136/bmjopen-2018-024983}},
  volume       = {{9}},
  year         = {{2019}},
}