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Living with dementia with Lewy bodies: an interpretative phenomenological analysis

Victoria Larsson1, Axel Holmbom-Larsen1, Gustav Torisson2

  • 1Department of Clinical Sciences, Malmö, Clinical Memory Research Unit, Lund University, Malmö, Sweden.

BMJ Open
|February 1, 2019
PubMed
Abstract

Insights

Living with dementia with Lewy bodies (DLB) involves significant disease impact, self-perception challenges, and reliance on social support. Understanding these subjective experiences is crucial for improving care for individuals with DLB.

Area of Science:

  • Gerontology
  • Neurology
  • Qualitative Health Research

Background:

  • Dementia with Lewy bodies (DLB) is a progressive neurodegenerative disorder.
  • Subjective experiences of individuals with DLB are not fully understood.
  • Understanding lived experiences is vital for patient-centered care.

Purpose of the Study:

  • To explore the subjective lived experiences of individuals diagnosed with dementia with Lewy bodies (DLB).
  • To gain insight into the challenges and coping mechanisms associated with DLB.
  • To inform clinical practice and research regarding DLB care.

Main Methods:

  • Qualitative study employing in-depth interviews.
  • Interpretative phenomenological analysis (IPA) was utilized.
  • Study conducted in a memory clinic setting with five male participants aged 78-88 years.

Main Results:

  • Three key themes emerged: disease impact (symptoms, restricted activities), self-perception and coping, and the importance of social support (healthcare, family, friends).
  • Participants reported challenges related to symptom experience and limitations in daily activities.
  • Self-perception and the role of social connections were significant factors in managing DLB.

Conclusions:

  • The study offers valuable first-hand insights into living with DLB, comparing it to other dementia types.
  • Findings highlight critical factors influencing well-being and disease management in DLB.
  • Direct involvement of individuals with DLB in care planning can lead to improved healthcare services.
Keywords:
dementiageriatric medicineneurologyold age psychiatryqualitative research

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