Characteristics associated with neuropsychiatric symptoms in persons living with dementia and caregiver distress and diminished well-being

2022 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Mariya A. Kovaleva ◽  
Melinda Higgins ◽  
Mary S. Dietrich ◽  
Bonnie Mowinski Jennings ◽  
Mi-Kyung Song ◽  
...  
Keyword(s):  
Neuropsychiatric Symptoms ◽  
Well Being ◽  
Caregiver Distress

scholarly journals The impact of lockdown during SARS-CoV-2 outbreak on behavioral and psychological symptoms of dementia

2021 ◽  
Vol 42 (3) ◽  
pp. 825-833
Author(s):  
Arianna Manini ◽  
Michela Brambilla ◽  
Laura Maggiore ◽  
Simone Pomati ◽  
Leonardo Pantoni
Keyword(s):  
Logistic Regression ◽  
Psychological Symptoms ◽  
Neuropsychiatric Symptoms ◽  
Community Dwelling ◽  
Caregiver Distress ◽  
Neuropsychiatric Inventory ◽  
Logistic Regression Models ◽  
The Impact ◽  
Behavioral And Psychological Symptoms

Abstract Background During Covid-19 pandemic, the Italian government adopted restrictive limitations and declared a national lockdown on March 9, which lasted until May 4 and produced dramatic consequences on people’s lives. The aim of our study was to assess the impact of prolonged lockdown on behavioral and psychological symptoms of dementia (BPSD). Methods Between April 30 and June 8, 2020, we interviewed with a telephone-based questionnaire the caregivers of the community-dwelling patients with dementia who had their follow-up visit scheduled from March 9 to May 15 and canceled due to lockdown. Among the information collected, patients’ BPSDs were assessed by the Neuropsychiatric Inventory (NPI). Non-parametric tests to compare differences between NPI scores over time and logistic regression models to explore the impact of different factors on BPSD worsening were performed. Results A total of 109 visits were canceled and 94/109 caregivers completed the interview. Apathy, irritability, agitation and aggression, and depression were the most common neuropsychiatric symptoms experienced by patients both at baseline and during Covid-19 pandemic. Changes in total NPI and caregiver distress scores between baseline and during lockdown, although statistically significant, were overall modest. The logistic regression model failed to determine predictors of BPSD worsening during lockdown. Conclusion This is one of the first studies to investigate the presence of BPSD during SARS-CoV-2 outbreak and related nationwide lockdown, showing only slight, likely not clinically relevant, differences in BPSD burden, concerning mostly agitation and aggression, anxiety, apathy and indifference, and irritability.

scholarly journals The Effects of COVID-19 Home Confinement in Dementia Care: Physical and Cognitive Decline, Severe Neuropsychiatric Symptoms and Increased Caregiving Burden

2020 ◽  
Vol 35 ◽  
pp. 153331752097672
Author(s):  
Flávia Borges-Machado ◽  
Duarte Barros ◽  
Óscar Ribeiro ◽  
Joana Carvalho
Keyword(s):  
Daily Living ◽  
Neuropsychiatric Symptoms ◽  
Exercise Program ◽  
Well Being ◽  
The Body ◽  
Subjective Burden ◽  
Neuropsychiatric Inventory ◽  
Caregiving Burden ◽  
Care Recipients ◽  
Contingency Plans

Purpose: This study aims to analyze home confinement impact on individuals with neurocognitive disorders (NCD) through informal caregiver’s perspective and examine how it has affected caregiving burden. Methods: Thirty-six caregivers (64.94 ± 13.54 years, 41.7% female) of individuals with NCD (74.28 ± 6.76 years, 66.7% female) selected from the Body & Brain exercise program were interviewed over the phone. The following instruments were used: Barthel Index (BI) to assess care recipients’ ability to function independently on activities of daily living (ADL), the Neuropsychiatric Inventory (NPI) to evaluate neuropsychiatric symptoms, and the CarerQol-7D/ CarerQol-VAS to determine caregiver subjective burden/well-being. Results: Pre and post-confinement comparisons showed that care recipients significantly declined their independence in ADL (p = 0.003) and increased NPI total score (MD = 5.72; 95% CI: 1.19 to 10.25, p = 0.015). As for caregivers, results also showed an increased caregiving burden (MD = −0.17; 95% CI: −0.27 to −0.08; p = 0.001) and a decline in their well-being (p = 0.015). Discussion: COVID-19 crisis sheds light on how imperative it is to find solutions and design contingency plans for future crisis, in order to ensure properly sustained support to dementia caregiving dyads and mitigate caregivers’ burden.

scholarly journals Prevalence and Severity of Neuropsychiatric Symptoms in Early- Versus Late-Onset Alzheimer’s Disease

2019 ◽  
Vol 34 (7-8) ◽  
pp. 433-438 ◽  
Author(s):  
Sarah Baillon ◽  
Amy Gasper ◽  
Frances Wilson-Morkeh ◽  
Megan Pritchard ◽  
Amala Jesu ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Early Onset ◽  
Late Onset ◽  
Functional Dependence ◽  
Neuropsychiatric Symptoms ◽  
Caregiver Distress ◽  
Duration Of Illness ◽  
Symptom Prevalence ◽  
Early Onset Alzheimer’S Disease

Background: The study aimed to compare neuropsychiatric symptoms (NPS) in people with early-onset Alzheimer’s disease (EOAD) and late-onset AD (LOAD). Methods: Fifty-six participants with LOAD and 24 participants with EOAD having mild dementia were assessed for NPS for their frequency, severity, and caregiver distress as measured by Neuropsychiatry Inventory (NPI) along with assessments of cognition and functional dependence. Results: Participants with EOAD and LOAD were not significantly different for total NPI score ( P = .057). Early-onset Alzheimer disease had greater prevalence of all the NPS except apathy. Participants with EOAD were significantly worse on anxiety ( P = .03), irritability ( P = .01), and sleep ( P < .01) subscales and their carers significantly more distressed by their irritability ( P = .002) and sleeping patterns ( P = .005). Regression analysis showed that higher NPI score was associated with longer duration of illness in EOAD and higher functional dependence in LOAD. Conclusions: The NPS severity was similar between EOAD and LOAD although EOAD had higher symptom prevalence and carer distress.

HIV/AIDS in Later Life

2018 ◽  
Author(s):  
Philip Sayegh ◽  
David J. Moore ◽  
Pariya Fazeli Wheeler
Keyword(s):  
Successful Aging ◽  
Neuropsychiatric Symptoms ◽  
Later Life ◽  
Well Being ◽  
The United States ◽  
Neurocognitive Deficits ◽  
Everyday Functioning ◽  
Persons Living With Hiv ◽  
Living With Hiv ◽  
Hiv Aids

Since the first cluster of people with HIV was identified in 1981, significant biomedical advances, most notably the development of antiretroviral therapy (ART), have led to considerably increased life expectancy as well as a reduction in the morbidity and mortality associated with HIV/AIDS. As a result, HIV/AIDS is no longer considered a terminal illness, but rather a chronic illness, and many persons living with HIV/AIDS are beginning to enter or have already reached later life. In fact, Americans ages 50 years and older comprise approximately half of all individuals with HIV/AIDS and represent the most rapidly growing subpopulation of persons living with HIV/AIDS in the United States. Despite significant advances in HIV/AIDS treatment and prognosis, older adults living with HIV (OALH) face a number of unique challenges and circumstances that can lead to exacerbated symptoms and poorer outcomes, despite demonstrating generally better ART adherence than their younger counterparts. These detrimental outcomes are due to both chronological aging and cohort effects as well as social and behavioral factors and long-term ART use. For instance, neurocognitive deficits and neuropsychiatric symptoms, including depression, anxiety, apathy, and fatigue, are often observed among OALH, which can result in feelings of loneliness, social isolation, and reduced social support. Taken together, these factors can lead to elevated levels of problems with everyday functioning (e.g., activities of daily living) among OALH. In addition, sociocultural factors such as race/ethnicity, ageism, sexism, homophobia, transphobia, geographic region, socioeconomic status and financial well-being, systemic barriers and disparities, and cultural values and beliefs play an influential role in determining outcomes. Notwithstanding the challenges associated with living with HIV/AIDS in later life, many persons living with HIV/AIDS are aging successfully. HIV/AIDS survivor and community mobilization efforts, as well as integrated care models, have resulted in some significant improvements in overall HIV/AIDS patient care. In addition, interventions aimed at improving successful aging outcomes among OALH are being developed in an attempt to effectively reduce the psychological and physical morbidity associated with HIV disease.

Caregiver burden in atypical dementias: comparing frontotemporal dementia, Creutzfeldt–Jakob disease, and Alzheimer's disease

2015 ◽  
Vol 28 (2) ◽  
pp. 269-273 ◽  
Author(s):  
Alice Uflacker ◽  
Mary C. Edmondson ◽  
Chiadi U. Onyike ◽  
Brian S. Appleby
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Frontotemporal Dementia ◽  
Caregiver Burden ◽  
Neuropsychiatric Symptoms ◽  
Published Data ◽  
Caregiver Distress ◽  
Severity Scores ◽  
Symptom Domains ◽  
Jakob Disease

ABSTRACTBackground:Caregiver burden is a significant issue in the treatment of dementia and a known contributor to institutionalization of patients with dementia. Published data have documented increased caregiver burden in behavioral variant frontotemporal dementia (bvFTD) compared to Alzheimer's disease (AD). Another atypical dementia with high-perceived caregiver burden is sporadic Creutzfeldt–Jakob disease (sCJD), but no formal studies have assessed this perception. The aim of this study was to compare caregiver burden across atypical dementia etiologies.Methods:76 adults with atypical dementia (young-onset AD [YOAD], bvFTD, language variant FTD [lvFTD], and sCJD) were administered an abbreviated version of the Zarit Burden Interview (ZBI), Neuropsychiatric Inventory (NPI-Q), and other assessment instruments during a five-year time period at Johns Hopkins Hospital (JHH). A Cox regression model examined differences between disease categories that impact mean ZBI scores.Results:Mean ZBI scores were significantly different between dementia etiologies, with bvFTD and sCJD having the highest caregiver burden (p = 0.026). Mean NPI-Q caregiver distress scores were highest in bvFTD and sCJD (p = 0.002), with sCJD and bvFTD also having the highest number of endorsed symptom domains (p = 0.012). On regression analyses, an interactive variable combining final diagnosis category and NPI-Q total severity score demonstrated statistically significant differences in mean ZBI scores for sCJD and bvFTD.Conclusions:This study demonstrates that bvFTD and sCJD have increased levels of caregiver burden, NPI-Q caregiver distress, total severity scores, and number of endorsed symptom domains. These results suggest that higher caregiver burden in bvFTD and sCJD are disease specific and possibly related to neuropsychiatric symptoms.

A pilot Project Exploring the Utility and Acceptability of a Socially-assistive Robot in an Assessment Unit for People with Neuropsychiatric Symptoms

2017 ◽  
Vol 41 (S1) ◽  
pp. S104-S104
Author(s):  
S. Loi ◽  
R. Khosla ◽  
K. Nguyen ◽  
N. Lautenschlager ◽  
D. Velakoulis
Keyword(s):  
Neuropsychiatric Symptoms ◽  
Well Being ◽  
Pilot Project ◽  
Future Directions ◽  
Assistive Robots ◽  
Socially Assistive Robots ◽  
Assistive Robot ◽  
Potential Benefits ◽  
Competing Interest ◽  
Socially Assistive Robot

ObjectivesSocially-assistive robots have been used with older adults with cognitive impairment in residential care, and found to improve mood and well-being. However, there is little known about the potential benefits in adults with other neuropsychiatric symptoms.AimsThe aim of this project was explore the utility and acceptability of a socially-assistive robot in engaging adults with a variety of neuropsychiatric symptoms.MethodsBetty, a socially-assistive robot was installed in a unit which specialises in the assessment and diagnosis of adults presenting with neuropsychiatric symptoms. She is 39 cm tall, has a baby-face appearance and has the ability to engage individuals through personalised services which can be programmed according to individuals’ preferences. These include singing songs and playing games. Training for the nursing staff who were responsible for incorporating Betty into the unit activities was provided. The frequency, duration and type of activity which Betty was involved in was recorded. Patients admitted who could provide informed consent were able to be included in the project. These participants completed pre- and post-questionnaires.ResultsEight patients (mean age 54.4 years, SD 13.6) who had diagnoses ranging from depression and schizophrenia participated. Types of activities included singing songs, playing Bingo and reading the news. Participants reported that they were comfortable with Betty and did not feel concerned in her presence. They enjoyed interacting with her.ConclusionsThis pilot project demonstrated that participants found Betty to be acceptable and she was useful in engaging them in activities. Future directions would involve larger sample sizes and different settings.Disclosure of interestThe authors have not supplied their declaration of competing interest.

The impact of neuropsychiatric symptoms of dementia on distress in family and professional caregivers in Singapore

2005 ◽  
Vol 17 (2) ◽  
pp. 253-263 ◽  
Author(s):  
Lay Ling Tan ◽  
Hwee Bee Wong ◽  
Harry Allen
Keyword(s):  
Psychological Symptoms ◽  
Neuropsychiatric Symptoms ◽  
Caregiver Distress ◽  
Behavioral Disturbances ◽  
Outpatient Group ◽  
Professional Caregiver ◽  
Diagnosis Of Dementia ◽  
Inpatient Group ◽  
Distress Scale ◽  
The Impact

Background: Behavioral and psychological symptoms of dementia (BPSD) are a source of distress and burden for caregivers. This study attempts to determine the neuropsychiatric symptoms, demographic characteristics, and referral patterns of outpatients with dementia compared with patients admitted to the acute psychogeriatric wards of Woodbridge Hospital. We also assessed the impact of neuropsychiatric symptoms on distress in family and professional caregivers.Method: Eighty-five consecutive patients with a first-time diagnosis of dementia were recruited. They were assessed using the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D). The professional caregiver distress questions were rephrased to assess the “occupational disruptiveness” of behaviors in the nursing home version (NPI-NH).Results: Neuropsychiatric symptoms were common and were positively correlated with caregiver distress. Family caregivers were significantly more distressed than professional caregivers over the delusion, agitation, depression and aberrant motor domains, although the severity of the behavioral disturbances reported was not higher in the sample. The median NPI scores for the agitation and disinhibition domains were significantly higher in the inpatient group, contrasting with a higher score for the depression domain among the outpatient group.Conclusions: This study highlights the prevalence of neuropsychiatric symptoms in dementia and illustrates the strong correlation between the severity of behavioral disturbances and caregiver distress.

scholarly journals Caregiver Distress in Cancer

2021 ◽  
Author(s):  
Anshika Arora
Keyword(s):  
Recovery Period ◽  
Well Being ◽  
Active Listening ◽  
Caregiver Distress ◽  
Life Care ◽  
Loved One ◽  
Good Communication ◽  
Oncological Treatment ◽  
Factors Associated ◽  
Spiritual Problems

Cancer is a chronic disease with associated physical, emotional, social, financial and spiritual problems. The primary caregiver takes care of all these cancer-related issues for the patient. In India, usually a family member or loved one is the caregiver of the patient. The caregivers themselves feel distress and many factors may be associated with their psychological well-being. Pattern of distress may vary according to phases of the disease like at diagnosis, during ongoing oncological treatment, recovery period, remission period, recurrence of cancer, during end of life care and bereavement. Identifying and understanding caregiver distress is the first step. Active listening and good communication is important to unearth the real concerns and fears in order to relieve the distress. This chapter covers components of caregiver distress, assessment, physical, psychosocial and spiritual factors associated with distress and its management. Lastly, some recent literature related to prevalence and factors associated with caregiver distress.

scholarly journals The Online Life Story Book: A randomized controlled trial on the effects of a digital reminiscence intervention for people with (very) mild dementia and their informal caregivers

PLoS ONE ◽  
2021 ◽  
Vol 16 (9) ◽  
pp. e0256251
Author(s):  
Teuntje R. Elfrink ◽  
Christina Ullrich ◽  
Miriam Kunz ◽  
Sytse U. Zuidema ◽  
Gerben J. Westerhof
Keyword(s):  
Randomized Controlled Trial ◽  
Life Story ◽  
Controlled Trial ◽  
Neuropsychiatric Symptoms ◽  
Informal Caregivers ◽  
Drop Out ◽  
Future Research ◽  
Caregiver Distress ◽  
Mild Dementia ◽  
Randomized Controlled

This paper describes a randomized controlled trial on the Online Life Story Book (OLSB), a digital reminiscence intervention for people with (very) mild dementia living at home. The aim of the study was to investigate the effectiveness of the OLSB on (i) neuropsychiatric symptoms (NPS) in persons with dementia and (ii) the distress and quality of life (QOL) of primary informal caregivers. A randomized controlled trial with individual randomization to one of two conditions was conducted: 1) intervention “Online Life Story Book”; 2) wait list control condition. In the intervention OLSB, a trained volunteer guided the participants through the process of creating an OLSB in approximately 5 meetings within a period of 8–10 weeks. Participants in the control condition received care as usual while they waited for 6 months before starting. Outcomes on NPS and distress and QOL of the informal caregiver were assessed at baseline (baseline, T0), 3 months (T1) and 6 months (T2) post baseline. Of the 42 persons with dementia, 23 were female and 19 were male. They had a mean age of 80 years, ranging from 49 to 95. The total drop-out rate was 14.3 percent. Small but insignificant effects on NPS, caregiver distress and QOL of caregivers were found with the exception of self-rated caregiver distress that reduced significantly during the intervention. One reason to explain the results might be that the included participants were in relatively good health. Practical challenges during the intervention could have affected the results as well. It might also be that the intervention caused effects on other outcomes than NPS and caregiver distress. In future research, it is important to study the effects in persons with more complaints and higher distress and to be careful in the selection of outcome variables in relation to the reminiscence functions served by the intervention.

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