Informal caregiver experiences at the end-of-life of individuals living with dementia with Lewy bodies: An interview study

Individuals with dementia with Lewy bodies (DLB) commonly die from dementia-related causes, but little is known regarding caregiver experiences during the end-of-life period in DLB. This reflects a critical knowledge gap given the high frequency of informal caregiving for individuals with dementia, high caregiver burden in DLB, and the fact that most individuals with DLB die from this disease. Investigators conducted telephone interviews with family members of individuals who died with DLB in the last 5 years. Investigators used a qualitative descriptive approach to analyze interview transcripts. Participants included 15 children, 13 spouses, and 2 other family members. Interviews averaged 31 min. Major themes included caregivers as the main drivers of care for individuals with DLB throughout the disease course and at the end of life, the impact of DLB features (e.g., fluctuations, hallucinations, and delusions) on end-of-life experiences, experiences relating to the caregiving role, death and post-death experiences, and supports employed by caregivers in the end-of-life period. End-of-life experiences for caregivers of individuals with DLB built on the accumulated burden of the disease course, where caregivers were often responsible for driving DLB care—from making the diagnosis to educating healthcare professionals and double-checking medical decisions. While some end-of-life experiences were consistent with those described in dementia palliative care more generally (e.g., financial stresses, poor sleep, being overwhelmed, and needing increased education and support), many DLB features specifically affected end-of-life caregiver experiences, such as the presence of delusions. Improving caregiver experiences at the end of life in DLB will require improved diagnosis and care for individuals with DLB throughout the disease course and also better strategies for treating behavioral symptoms. More research is needed regarding drivers of quality end-of-life experiences for individuals with DLB and their families and how drivers and strategies may differ between dementias.

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End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers

PLoS ONE ◽

10.1371/journal.pone.0217039 ◽

2019 ◽

Vol 14 (5) ◽

pp. e0217039 ◽

Cited By ~ 4

Author(s):

Melissa J. Armstrong ◽

Slande Alliance ◽

Angela Taylor ◽

Pamela Corsentino ◽

James E. Galvin

Keyword(s):

End Of Life ◽

Dementia With Lewy Bodies ◽

Life Experiences ◽

Qualitative Interviews ◽

Lewy Bodies

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Cause of Death and End-of-Life Experiences in Individuals with Dementia with Lewy Bodies

Journal of the American Geriatrics Society ◽

10.1111/jgs.15608 ◽

2018 ◽

Vol 67 (1) ◽

pp. 67-73 ◽

Cited By ~ 4

Author(s):

Melissa J. Armstrong ◽

Slande Alliance ◽

Pamela Corsentino ◽

Steven T. DeKosky ◽

Angela Taylor

Keyword(s):

End Of Life ◽

Cause Of Death ◽

Dementia With Lewy Bodies ◽

Life Experiences ◽

Lewy Bodies

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Challenges in Predicting Cognitive Decline in Dementia with Lewy Bodies

Dementia and Geriatric Cognitive Disorders ◽

10.1159/000515008 ◽

2021 ◽

pp. 1-8

Author(s):

Konstantinos Tsamakis ◽

Christoph Mueller

Keyword(s):

Cognitive Impairment ◽

Clinical Practice ◽

Cognitive Decline ◽

Dementia With Lewy Bodies ◽

Sleep Disturbances ◽

Neuropsychiatric Symptoms ◽

Lewy Bodies ◽

Assessment Tools ◽

Disease Course ◽

The Impact

Despite being the second most common form of neurodegenerative dementia, dementia with Lewy bodies (DLB) is under-recognized and carries a worse prognosis than other subtypes of the condition. Cognitive impairment is a cardinal feature of all types of dementia and DLB presents with a distinct profile with deficits in attention, executive function, and visuoperceptual abilities. This difference from Alzheimer’s disease and the common presence of neuropsychiatric symptoms may lead to challenges in predicting cognitive decline in this patient population. Firstly, the diagnosis of DLB is often delayed in clinical practice leading to variability from which time point in the disease course cognitive decline is measured. Secondly, the most frequently used measurement tools for cognitive difficulties focus on memory and naming rather than the domains affected by DLB. While there is now largely a consensus which tools are useful in diagnosing DLB, their validity in assessing deteriorating cognition is less clear. Thirdly, the presence of fluctuating cognition, the propensity to develop delirium episodes, as well as difficulties in distinguishing the two entities in clinical practice make it difficult to predict the disease course. Sleep disturbances are likely to influence cognitive decline but require further study in patients within established DLB. Fourthly, as in most cases of dementia, neuropathological comorbidities are frequently present in DLB. While the influence of Alzheimer’s pathology on cognitive decline in DLB is comparatively well understood, the impact of other pathologies remains unclear. The recent definition of research criteria for mild cognitive impairment in DLB could facilitate earlier diagnosis and more structured follow-up. Assessment tools measuring cognitive domains predominantly affected in DLB need to be more consistently used in longitudinal studies and clinical practice, as well as concurrent measures of fluctuations in cognition. Greater availability of biomarkers and digital healthcare solutions can play an important role in enabling more accurate monitoring and prediction of cognitive decline in DLB.

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Protocol for an observational cohort study identifying factors predicting accurately end of life in dementia with Lewy bodies and promoting quality end-of-life experiences: the PACE-DLB study

BMJ Open ◽

10.1136/bmjopen-2020-047554 ◽

2021 ◽

Vol 11 (5) ◽

pp. e047554

Author(s):

Melissa J Armstrong ◽

Henry L Paulson ◽

Susan M Maixner ◽

Julie A Fields ◽

Angela M Lunde ◽

...

Keyword(s):

Cohort Study ◽

End Of Life ◽

Lewy Body ◽

Dementia With Lewy Bodies ◽

Life Experience ◽

Life Experiences ◽

Lewy Bodies ◽

Lewy Body Dementia ◽

The Individual

IntroductionDementia with Lewy bodies (DLB) is one of the most common degenerative dementias. Despite the fact that most individuals with DLB die from complications of the disease, little is known regarding what factors predict impending end of life or are associated with a quality end of life.Methods and analysisThis is a multisite longitudinal cohort study. Participants are being recruited from five academic centres providing subspecialty DLB care and volunteers through the Lewy Body Dementia Association (not receiving specialty care). Dyads must be US residents, include individuals with a clinical diagnosis of DLB and at least moderate-to-severe dementia and include the primary caregiver, who must pass a brief cognitive screen. The first dyad was enrolled 25 February 2021; recruitment is ongoing. Dyads will attend study visits every 6 months through the end of life or 3 years. Study visits will occur in-person or virtually. Measures include demographics, DLB characteristics, caregiver considerations, quality of life and satisfaction with end-of-life experiences. For dyads where the individual with DLB dies, the caregiver will complete a final study visit 3 months after the death to assess grief, recovery and quality of the end-of-life experience. Terminal trend models will be employed to identify significant predictors of approaching end of life (death in the next 6 months). Similar models will assess caregiver factors (eg, grief, satisfaction with end-of-life experience) after the death of the individual with DLB. A qualitative descriptive analysis approach will evaluate interview transcripts regarding end-of-life experiences.Ethics and disseminationThis study was approved by the University of Florida institutional review board (IRB202001438) and is listed on clinicaltrials.gov (NCT04829656). Data sharing follows National Institutes of Health policies. Study results will be disseminated via traditional scientific strategies (conferences, publications) and through collaborating with the Lewy Body Dementia Association, National Institute on Aging and other partnerships.

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“Managing uncertainty”: Experiences of family members of burn patients from injury occurrence to the end-of-life period

Burns ◽

10.1016/j.burns.2021.02.009 ◽

2021 ◽

Author(s):

Jonathan Bayuo ◽

Katherine Bristowe ◽

Richard Harding ◽

Anita Eseenam Agbeko ◽

Prince Kyei Baffour ◽

...

Keyword(s):

End Of Life ◽

Family Members ◽

Burn Patients ◽

Life Period ◽

Injury Occurrence

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The Impact of Levels of Advance Care Planning Engagement on Bereaved Caregivers’ Perceptions of Cancer Decedents’ End-of-life Experiences (GP759)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2020.04.186 ◽

2020 ◽

Vol 60 (1) ◽

pp. 280-281

Author(s):

Kristin Levoy ◽

Harleah Buck ◽

Victoria Mitrani

Keyword(s):

End Of Life ◽

Advance Care Planning ◽

Life Experiences ◽

Care Planning ◽

Advance Care ◽

The Impact

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The impact of parkinsonism on costs of care in patients with AD and dementia with Lewy bodies

Neurology ◽

10.1212/wnl.61.7.944 ◽

2003 ◽

Vol 61 (7) ◽

pp. 944-949 ◽

Cited By ~ 33

Author(s):

D. L. Murman ◽

S. B. Kuo ◽

M. C. Powell ◽

C. C. Colenda

Keyword(s):

Dementia With Lewy Bodies ◽

Lewy Bodies ◽

Costs Of Care ◽

The Impact

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Preclinical Polymodal Hallucinations for 13 Years before Dementia with Lewy Bodies

Behavioural Neurology ◽

10.1155/2014/694296 ◽

2014 ◽

Vol 2014 ◽

pp. 1-13 ◽

Cited By ~ 2

Author(s):

Carlo Abbate ◽

Pietro Davide Trimarchi ◽

Silvia Inglese ◽

Niccolò Viti ◽

Alessandra Cantatore ◽

...

Keyword(s):

Dementia With Lewy Bodies ◽

Phenomenological Study ◽

Clinical Phenotype ◽

Lewy Bodies ◽

Intermediate Stage ◽

Disease Course ◽

Charles Bonnet Syndrome ◽

Preclinical Phase ◽

Cognitive Study ◽

Multiple Domain

Objective. We describe a case of dementia with Lewy bodies (DLB) that presented long-lasting preclinical complex polymodal hallucinations.Background. Few studies have deeply investigated the characteristics of hallucinations in DLB, especially in the preclinical phase. Moreover, the clinical phenotype of mild cognitive impairment-(MCI-) DLB is poorly understood.Methods. The patient was followed for 4 years and a selective phenomenological and cognitive study was performed at the predementia stage.Results. The phenomenological study showed the presence of hypnagogic and hypnopompic hallucinations that allowed us to make a differential diagnosis between DLB and Charles Bonnet syndrome (CBS). The neuropsychological evaluation showed a multiple domain without amnesia MCI subtype with prefrontal dysexecutive, visuoperceptual, and visuospatial impairments and simultanagnosia, which has not previously been reported in MCI-DLB.Conclusions. This study extends the prognostic value of hallucinations for DLB to the preclinical phases. It supports and refines the MCI-DLB concept and identifies simultanagnosia as a possible early cognitive marker. Finally, it confirms an association between hallucinations and visuoperceptual impairments at an intermediate stage of the disease course and strongly supports the hypothesis that hallucinations in the earliest stages of DLB may reflect a narcolepsy-like REM-sleep disorder.

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