Lewy body dementia: The caregiver experience of clinical care

Galvin, James E.; Duda, John E.; Kaufer, Daniel I.; Lippa, Carol F.; Taylor, Angela; Zarit, Steven H.

doi:10.1016/j.parkreldis.2010.03.007

Cited by 119 publications

(135 citation statements)

References 20 publications

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“…In the absence of biomarkers, clinical diagnoses inform prognosis and counseling. The discrepancy between timing of symptom onset and diagnosis is not surprising; individuals with DLB often see multiple physicians over several years before receiving the correct diagnosis …”

Section: Discussionsupporting

confidence: 89%

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

Armstrong

Alliance

Corsentino³

et al. 2018

J American Geriatrics Society

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Objectives To investigate the natural history, cause of death, and end‐of‐life experiences of individuals diagnosed with dementia with Lewy bodies (DLB). Design Twenty‐question online survey administered through the Lewy Body Dementia Association. Setting United States. Participants Caregivers, family, and friends of individuals who died in the past 5 years with a diagnosis of DLB (survey respondents: n = 658, 89% female, median age 50–69). Measurements The survey included 3 questions about the respondent's background and 17 about the end‐of‐life experiences of the person with DLB. Topics included time from symptom onset and diagnosis to death, cause of death, advance directive completion, end‐of‐life education, hospice use, and location of death. Results were analyzed descriptively. Results Most individuals with DLB died within 5 years of diagnosis (median 3–4 years). Respondents indicated that physicians rarely discussed what to expect at the end of life (40% total, but only 22% to a helpful degree) and that the caregiver usually initiated such conversations. Death was usually expected, but fewer than half of respondents felt prepared for what to expect. Seventy‐eight percent used hospice, usually at home or in skilled care, with wide variations in duration. Failure to thrive was the most common cause of death (65%), followed by pneumonia and swallowing difficulties (23%), other medical conditions (19%), and complications from falling (10%) (multiple causes allowed). Conclusion Study results highlight a critical need for better prognostic counseling and education for persons and families living with DLB. The results of the current study can inform such counseling, but additional studies are needed to further explore expected prognosis of individuals diagnosed clinically with DLB and optimal use of palliative care services. J Am Geriatr Soc 67:67–73, 2019.

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Section: Discussionsupporting

confidence: 89%

“…When palliative care is used in dementia, it is commonly initiated only in the last weeks of life, possibly because recognizing the end of life in dementia can be challenging . It is likely that such uncertainty hinders care of individuals with Lewy body dementia, more than half of whom specialists refer back to their primary care physicians for ongoing care …”

supporting

confidence: 67%

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

Armstrong

Alliance

Corsentino³

et al. 2018

J American Geriatrics Society

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“…The LBD caregiver survey supports this, with 77% of caregivers reporting difficulty finding a physician who knew about treating LBD [10]. It has also been hypothesized that this lack of knowledge is isolating for caregivers and they are less likely to receive support from others in the community at large [12].…”

Section: Introductionmentioning

confidence: 99%

Lewy body dementia: the impact on patients and caregivers

Zweig

Galvin

2014

Alzheimers Res Ther

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Lewy body dementia (LBD) is the second most common neurodegenerative dementia in older adults, yet there remains a delay in diagnosis that limits healthcare providers’ ability to maximize therapeutic outcomes and enhance patient and caregiver quality of life. The impact of LBD on patients includes limiting the potential exposure to medications that may cause adverse outcomes, and addressing how the disease manifestations, such as autonomic features and behavior, affect quality of life. LBD impact on caregivers has been discussed to a greater degree in the literature, and there is clear evidence of caregiver burden and grief associated with disease manifestations. Other common caregiving concerns, such as access to care, prevention of hospitalization, managing behavior, and reviewing prognosis and nursing home placement, are important to comprehensively address the needs of patients with LBD and their caregivers.

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“…We chose to use the time of first symptom in our analyses as this is more comparable between patients than the time of diagnosis. The latter varies widely due to the doctor's delay that is often seen in DLB [36]. Furthermore, it is possible that clinical symptoms such as hallucinations have been missed because they may not always be reported by the patient or recognized as such by the physician.…”

Section: Discussionmentioning

confidence: 99%

The Pentagon Copying Test and the Clock Drawing Test as Prognostic Markers in Dementia with Lewy Bodies

Vergouw

Salomé

Kerklaan

et al. 2018

Dement Geriatr Cogn Disord

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Aims: To determine whether the pentagon copying test (PCT) and the clock drawing test (CDT) are associated with nursing home admission or survival in dementia with Lewy bodies (DLB). Methods: The PCT and/or the CDT were retrospectively collected from 103 clinically diagnosed probable DLB patients at a university medical center and general hospital. Patients with high versus low scores on these tests were compared. Results: Kaplan-Meier analysis showed that patients with a low score on the PCT had a shorter time to nursing home admission than patients with a high score (log-rank χ² = 6.1, p = 0.01). Patients with a low score on the PCT or the CDT had a shorter survival than patients with a high score (log-rank χ² = 5.4, p = 0.02, and log-rank χ² = 11.2, p < 0.001, respectively). Cox regression analyses showed the same associations with an HR of 2.2 (95% CI 1.2–4.1) for the PCT and an HR of 2.9 (95% CI 1.6–5.4) for the CDT. Conclusion: The PCT and the CDT may function as prognostic markers in DLB. This finding is clinically relevant as these tests can be applied easily in the clinical setting and can provide valuable prognostic information. Furthermore, it may improve disease management and patient selection for research purposes.

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Lewy body dementia: The caregiver experience of clinical care

Abstract: BACKGROUND-Lewy body dementia (LBD) is the second most common cause of dementia, however, little is known about how the clinical diagnosis of LBD is obtained in the community or the caregiver experience while seeking the diagnosis.

Cited by 119 publications

References 20 publications

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

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

Lewy body dementia: the impact on patients and caregivers

The Pentagon Copying Test and the Clock Drawing Test as Prognostic Markers in Dementia with Lewy Bodies

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