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

2018 ◽  
Vol 67 (1) ◽  
pp. 67-73 ◽  
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

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

PLoS ONE ◽  
2019 ◽  
Vol 14 (5) ◽  
pp. e0217039 ◽  
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

scholarly journals 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 ◽  
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.

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

Dementia ◽  
2021 ◽  
pp. 147130122110384
Author(s):  
Melissa J Armstrong ◽  
Slande Alliance ◽  
Pamela Corsentino ◽  
Angela Lunde ◽  
Angela Taylor
Keyword(s):  
End Of Life ◽  
Dementia With Lewy Bodies ◽  
Life Experiences ◽  
Family Members ◽  
Lewy Bodies ◽  
Poor Sleep ◽  
Disease Course ◽  
Life Period ◽  
Caregiver Experiences ◽  
The Impact

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.

scholarly journals Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis

2020 ◽  
Vol 37 (9) ◽  
pp. 728-737
Author(s):  
Melissa J. Armstrong ◽  
Slande Alliance ◽  
Pamela Corsentino ◽  
Susan M. Maixner ◽  
Henry L. Paulson ◽  
...  
Keyword(s):  
Health Care ◽  
End Of Life ◽  
Health Care Providers ◽  
Dementia With Lewy Bodies ◽  
Skilled Nursing Facility ◽  
Lewy Bodies ◽  
The United States ◽  
Care Providers ◽  
Skilled Nursing ◽  
Eol Care

Objective: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States. Methods: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care. Results: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice. Conclusion: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.

Differences in glucose metabolism between dementia with Lewy bodies and dementia associated with Parkinson's disease

2005 ◽  
Vol 32 (S 4) ◽  
Author(s):  
P Häussermann ◽  
A.O Ceballos-Baumann ◽  
H Förstl ◽  
R Feurer ◽  
B Conrad ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Glucose Metabolism ◽  
Dementia With Lewy Bodies ◽  
Lewy Bodies

Dementia with Lewy bodies

2018 ◽  
pp. 11-21
Author(s):  
O. S. Levin ◽  
E. E. Vasenina ◽  
A. Sh. Chimagomedova ◽  
N. G. Dudchenko
Keyword(s):  
Parkinson’S Disease ◽  
Dementia With Lewy Bodies ◽  
Cholinesterase Inhibitors ◽  
Lewy Bodies ◽  
Diagnosis And Treatment ◽  
Modern Concept ◽  
Historical Aspect ◽  
Neurodegenerative Process ◽  
Icd 10

Te lecture presents modern concept of the symptoms, diagnosis and treatment of dementia with Lewy bodies (DLB), which accounts for about 10% of cases of dementia. Te nosological status of DLB and the problem of ratio of DLB and Parkinson’s disease which, apparently, represent two phenotypic variants of one neurodegenerative process («diseases with Lewy bodies») are considered in historical aspect. Approaches to the diagnosis and coding of DLB in accordance with ICD-10 are proposed. Te role of cholinesterase inhibitors, antipsychotics, levodopa, rasagiline and other drugs in the treatment of patients with DLB is аnalyzed.

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