Faculty Opinions recommendation of The individual course of neuropsychiatric symptoms in people with Alzheimer's and Lewy body dementia: 12-year longitudinal cohort study.

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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Interaction of caregiver-expressed emotions and neuropsychiatric symptoms in persons with dementia: a longitudinal cohort study

BMJ Open ◽

10.1136/bmjopen-2020-046869 ◽

2021 ◽

Vol 11 (9) ◽

pp. e046869

Author(s):

Eva YL Tan ◽

Marjolein E de Vugt ◽

Kay Deckers ◽

Jos MGA Schols ◽

Frans RJ Verhey

Keyword(s):

Cohort Study ◽

Expressed Emotion ◽

Neuropsychiatric Symptoms ◽

Informal Caregivers ◽

Dyadic Interaction ◽

Longitudinal Cohort Study ◽

Longitudinal Cohort ◽

Increased Risk ◽

Over Time ◽

At Home

ObjectivesNeuropsychiatric symptoms (NPS) have a major impact in persons with dementia (PwD). The interaction between the caregiver and the person with dementia may be related to the emergence of NPS. The concept of expressed emotion (EE) is used to capture this dyadic interaction. The aim of the present study is to examine longitudinally the association between EE in caregivers and NPS in PwD living at home.DesignA longitudinal cohort study with 2 years of follow-up.SettingPwD and their informal caregivers living at home in the south of the Netherlands.Participants112 dyads of PwD and their caregivers from the MAAstricht Study of BEhavior in Dementia.Main outcome measuresEE was measured at baseline with the Five-Minute Speech Sample and was used to classify caregivers in a low-EE or high-EE group. Associations between EE and neuropsychiatric subsyndromes (hyperactivity, mood and psychosis) measured with the Neuropsychiatric Inventory (NPI) were analysed over time.ResultsSeventy-six (67.9%) caregivers were classified in the low-EE group and 36 (32.1%) in the high-EE group. There was no difference between the EE groups in mean NPI scores over time. In the high-EE group, hyperactivity occurred more frequently than in the low-EE group at baseline (p=0.013) and at the other time points, but the mean difference was not always significant. There were no differences for the mood and psychosis subsyndromes. PwD with caregivers scoring high on the EE subcategory critical comments had an increased risk of institutionalisation (OR 6.07 (95% CI 1.14 to 32.14, p=0.034)) in comparison with caregivers scoring low on critical comments.ConclusionsHigh EE in informal caregivers is associated with hyperactivity symptoms in PwD. This association is likely to be bidirectional. Future studies investigating this association and possible interventions to reduce EE are needed.

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