Longitudinal study of medication use in caregivers of people with Alzheimer’s disease – Kuopio ALSOVA study

Dementia ◽  
2018 ◽  
Vol 19 (5) ◽  
pp. 1573-1585
Author(s):  
Tarja Välimäki ◽  
Julia FM Gilmartin-Thomas ◽  
J Simon Bell ◽  
Tuomas Selander ◽  
Anne M Koivisto
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Caregivers ◽  
Social Insurance ◽  
Medication Use ◽  
Self Report ◽  
Rank Test ◽  
Kappa Statistics ◽  
Prescription Register ◽  
People With Dementia

Background The longitudinal pattern of medication use among family caregivers of people with dementia is not well understood, despite the potential for medication over- or under-use. Objectives To investigate caregiver medication use over a five-year follow-up using data obtained via self-report and from a national prescription register, and compare agreement between medication data obtained from the two sources. Methods Medication data for 222 family caregivers of people with Alzheimer’s disease were obtained via self-report and from the Finnish Social Insurance Institution. Generalised estimating equations, Kappa statistics and related samples Wilcoxon signed rank test were used to analyse medication use over time. Results The mean number of medications used by caregivers increased from 3.4 to 4.1 (self-reported current regular medications) and 2.4 to 2.8 (reimbursed prescription medications during the past 90 days) over five years (p < 0.001). Significantly, more medications were identified via self-report (mean 3.6, SD = 3.3) than the national prescription register (mean 2.6, SD = 2.4, Z= –12.300, p < 0.001). Agreement between the two data sources was good for cardiovascular medications and anti-hypertensives (Kappa = 0.883–0.967, p < 0.001) and medications for acid-related disorders (Kappa = 0.508–0.092, p < 0.001). Agreement was moderate for analgesics (Kappa = 0.281–0.477, p < 0.001) and psychotropics (Kappa = 0.281–0.562, p < 0.002). The proportion of caregivers using five or more medications increased from 27.5% to 44.6% (self-report), and 16.7% to 27.7% (register) (p < 0.001). Conclusion Caregivers use an increasing number of medications in the first five years of caring for persons with dementia, and self-report using a higher number of medications than data from the national prescription register suggest.

Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers

2013 ◽  
Vol 25 (7) ◽  
pp. 1097-1105 ◽  
Author(s):  
Maria Fernanda Barroso Sousa ◽  
Raquel Luiza Santos ◽  
Cynthia Arcoverde ◽  
Pedro Simões ◽  
Tatiana Belfort ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Depressive Symptoms ◽  
Family Caregivers ◽  
Linear Regression Analysis ◽  
Cognitive Factors ◽  
People With Dementia ◽  
Significant Difference

ABSTRACTBackground: The validity of self-reported quality-of-life (QoL) assessments of people with dementia (PWD) is a critical issue. We designed this study to determine the non-cognitive factors that are associated with self-reported QoL and PWD QoL as rated by family caregivers.Methods: Using a cross-sectional study, we assessed QoL of 41 people with mild Alzheimer's disease (AD). The individuals with AD and their family caregivers completed the Quality of Life in Alzheimer's Disease Scale (QoL-AD), the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), the Mini-Mental State Examination (MMSE), the Clinical Dementia Rating (CDR) scale, the Cornell Scale for Depression in Dementia (CSDD), the Pfeffer Functional Activities Questionnaire (FAQ), and the Zarit Burden Interview (ZBI). Univariate and multivariate regression analyses were conducted to examine the contribution of the various cofactors.Results: We observed a significant difference (t = 3.292, p < 0.01, d = 0.727) in the QoL measures of PWD after comparing self-reported assessments with the assessments of family caregivers. Linear regression analysis demonstrated that awareness of disease was related to PWD QoL-AD scores. Both the education levels of family caregivers and the depressive symptoms in PWD were related to the family caregivers’ ratings of PWD QoL.Conclusions: The difference between self-reported QoL and family caregivers’ ratings of QoL in people with mild dementia indicated that cognitive impairment was not the primary factor that accounted for the differences in the QoL assessments. Our findings suggested that non-cognitive factors, such as awareness of disease and depressive symptoms, played an important role in the differences between the self-reported AD QoL ratings and the caregivers’ AD QoL ratings. A major implication is that discrete measures such as cognition or level of function are likely to miss important factors that influence QoL.

scholarly journals The Effects of Involvement in Training And Volunteering with Families of People With Dementia on The Knowledge and Attitudes of Volunteers Towards Dementia

2021 ◽  
Author(s):  
Daphne Sze Ki Cheung ◽  
Lily Yuen Wah Ho ◽  
Robin Ka Ho Kwok ◽  
Daniel Lok Lam Lai ◽  
Claudia Kam Yuk Lai
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Well Being ◽  
Rank Test ◽  
Volunteer Training ◽  
Voluntary Service ◽  
Disease Knowledge ◽  
Knowledge And Attitudes ◽  
People With Dementia ◽  
Knowledge Scale

Abstract Background: Volunteers have been a valuable resource in supporting people with dementia and their caregivers in the community. However, factors such as misconceptions, negative attitudes towards dementia, and a lack of motivation might impact the quality of volunteer care. The aim of the present paper is to examine the effect of training and service provision on the knowledge and attitudes of volunteers towards dementia, as well as the association between such knowledge and attitudes and the motivation to volunteer. Methods: The present study is part of an effectiveness-implementation cluster randomized clinical hybrid trial using a music-with-movement intervention to promote the well-being of people with dementia and their informal caregivers. Volunteers were recruited to receive training to support the delivery of the intervention. Training and enrichment workshops were offered to volunteers during the one-year project. Before and after their volunteer training and service, the recruited volunteers were asked to complete the following assessments: The Volunteer Functions Inventory, Dementia Attitudes Scale, and the Alzheimer’s Disease Knowledge Scale. Wilcoxon signed-rank test and multiple regression test were applied for statistical analyses. Results: A total of 127 volunteers were recruited and 81 of them completed a mean period of 47.32 weeks of training and service. Significant improvements in their total score on the Alzheimer’s Disease Knowledge Scale (p=.009) and Dementia Attitudes Scale (p<.001) were found. Dementia knowledge (β=.57, p<.001) and attitudes (β=-.18, p=.038) were found to have the most significant association with the motivation to be a volunteer at baseline. Conclusions: The present study illustrated the importance of quality volunteer training and voluntary service in improving the dementia knowledge and attitudes of volunteers. It also shed light on the association between knowledge and attitudes with the motivation to volunteer. Accordingly, future research and public health policymakers should address more efforts to amplify the advantage of volunteers as a vital asset in dementia care.Trial Registration: NCT03575026 (ClinicalTrials.gov), First registeration on 02/07/2018.

scholarly journals Alzheimer’s Disease Caregiver Characteristics and Their Relationship with Anticipatory Grief

2021 ◽  
Vol 18 (16) ◽  
pp. 8838
Author(s):  
Alba Pérez-González ◽  
Josep Vilajoana-Celaya ◽  
Joan Guàrdia-Olmos
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Caregivers ◽  
Depressive Symptomatology ◽  
Anticipatory Grief ◽  
Cross Sectional ◽  
Sociodemographic Data ◽  
People With Dementia ◽  
Cross Sectional Design ◽  
Person With Dementia

In Alzheimer’s disease, two fundamental aspects become important for caregivers: ambiguity and ambivalence. Thus, anticipatory grief is considered an active psychological process that is very different from the mere anticipation of death. The present study aims to determine which characteristics of family caregivers of people with dementia, such as age, gender, educational level, relationship with the person with dementia, years with dementia or years as a caregiver, are related to the presence of anticipatory grief. A cross-sectional design was employed. The sample consisted of a total of 129 subjects who cared for a family member with dementia. A sociodemographic data sheet and a battery of tests measure the presence of anticipatory grief, caregiver burden and/or psychopathology. The results obtained allowed us to confirm some of the hypotheses regarding the anticipatory grief construct, the importance of the care time factor, in years and per day, as well as the relevance of the previous demographic and psychopathological profile (being female, spouse function and possible depressive symptomatology). Likewise, from the prediction analyzes performed, it seems that these variables can predict anticipatory grief. These results propose interesting opportunities to formulate care proposals to professionals and family caregivers in relation to care tasks and caregiver skills.

“In the flesh”: Narratives of family caregivers at risk of Early-onset Familial Alzheimer’s Disease

Dementia ◽  
2018 ◽  
Vol 19 (5) ◽  
pp. 1474-1491
Author(s):  
Maritza García-Toro ◽  
María Cruz Sánchez-Gómez ◽  
Lucía Madrigal Zapata ◽  
Francisco Javier Lopera
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
At Risk ◽  
Family Caregivers ◽  
Early Onset ◽  
Subjective Experience ◽  
Familial Alzheimer’S Disease ◽  
People With Dementia ◽  
Familial Alzheimer's Disease ◽  
The Impact

In the growing body of literature dealing with the consequences of family caregiving amongst people with dementia, there are few studies examining the impact of Early-onset Familial Alzheimer’s Disease on caregivers. This study exposes the subjective experience of a group of family caregivers who themselves possess a genetic susceptibility to develop this form of dementia. We interviewed and analyzed the accounts of 27 caregivers belonging to family lineages carrying the E280A mutation for Early-onset Alzheimer’s Disease. We utilized a phenomenological method to analyze these accounts, initially tracking seven theoretical categories (Anxiety, Depression, Burden, Resilience, Self-efficacy, Social Support, and Coping Strategies) and then subsequently two additional categories which emerged (Conceptions about the Disease and Other Vital Experiences Interfering with Caregiving). The results show that caring for a loved one while simultaneously running the risk of developing the same form of Alzheimer’s Disease permeates the caregivers’ experience both in a negative and a positive way. The continuous exposition to emotional stress in these caregivers should be seriously considered as they may be at risk of accelerating the onset of symptoms of Alzheimer’s Disease, while simultaneously, early psychological symptoms of dementia may be masked by the emotional sequelae of caregiving, interfering with early diagnosis. Certainly, support services for the entire family group are suggested.

scholarly journals Validation of the Italian Version of the Caregiver Abuse Screen among Family Caregivers of Older People with Alzheimer’s Disease

2017 ◽  
Vol 2017 ◽  
pp. 1-15 ◽  
Author(s):  
Maria Gabriella Melchiorre ◽  
Mirko Di Rosa ◽  
Francesco Barbabella ◽  
Norma Barbini ◽  
Fabrizia Lattanzio ◽  
...  
Keyword(s):  
Risk Factors ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Older People ◽  
Family Caregivers ◽  
Elder Abuse ◽  
Principal Component ◽  
Validity And Reliability ◽  
Italian Version ◽  
People With Dementia

Introduction. Elder abuse is often a hidden phenomenon and, in many cases, screening practices are difficult to implement among older people with dementia. The Caregiver Abuse Screen (CASE) is a useful tool which is administered to family caregivers for detecting their potential abusive behavior.Objectives. To validate the Italian version of the CASE tool in the context of family caregiving of older people with Alzheimer’s disease (AD) and to identify risk factors for elder abuse in Italy.Methods. The CASE test was administered to 438 caregivers, recruited in the Up-Tech study. Validity and reliability were evaluated using Spearman’s correlation coefficients, principal-component analysis, and Cronbach’s alphas. The association between the CASE and other variables potentially associated with elder abuse was also analyzed.Results. The factor analysis suggested the presence of a single factor, with a strong internal consistency (Cronbach’s alpha = 0.86). CASE score was strongly correlated with well-known risk factors of abuse. At multivariate level, main factors associated with CASE total score were caregiver burden and AD-related behavioral disturbances.Conclusions. The Italian version of the CASE is a reliable and consistent screening tool for tackling the risk of being or becoming perpetrators of abuse by family caregivers of people with AD.

Identification and Temporal Characterization of Features Associated with the Conversion from Mild Cognitive Impairment to Alzheimer’s Disease

2018 ◽  
Vol 15 (8) ◽  
pp. 751-763 ◽  
Author(s):  
Antonio Martinez-Torteya ◽  
Hugo Gomez-Rueda ◽  
Victor Trevino ◽  
Joshua Farber ◽  
Jose Tamez-Pena ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Impairment ◽  
Mild Cognitive Impairment ◽  
Neuropsychological Tests ◽  
Quantitative Mri ◽  
Rank Test ◽  
Longitudinal Models ◽  
Log Rank Test ◽  
Medical Histories

Background: Diagnosing Alzheimer’s disease (AD) in its earliest stages is important for therapeutic and support planning. Similarly, being able to predict who will convert from mild cognitive impairment (MCI) to AD would have clinical implications. Objectives: The goals of this study were to identify features from the Alzheimer’s Disease Neuroimaging Initiative (ADNI) database associated with the conversion from MCI to AD, and to characterize the temporal evolution of that conversion. Methods: We screened the publically available ADNI longitudinal database for subjects with MCI who have developed AD (cases: n=305), and subjects with MCI who have remained stable (controls: n=250). Analyses included 1,827 features from laboratory assays (n=12), quantitative MRI scans (n=1,423), PET studies (n=136), medical histories (n=72), and neuropsychological tests (n=184). Statistical longitudinal models identified features with significant differences in longitudinal behavior between cases and matched controls. A multiple-comparison adjusted log-rank test identified the capacity of the significant predictive features to predict early conversion. Results: 411 features (22.5%) were found to be statistically different between cases and controls at the time of AD diagnosis; 385 features were statistically different at least 6 months prior to diagnosis, and 28 features distinguished early from late conversion, 20 of which were obtained from neuropsychological tests. In addition, 69 features (3.7%) had statistically significant changes prior to AD diagnosis. Conclusion: Our results characterized features associated with disease progression from MCI to AD, and, in addition, the log-rank test identified features which are associated with the risk of early conversion.

Sleep Behaviors in Persons With Alzheimer’s Disease: Associations With Caregiver Sleep and Affect

2020 ◽  
pp. 073346482097924
Author(s):  
Molly A. Mather ◽  
Holly B. Laws ◽  
Jasmine S. Dixon ◽  
Rebecca E. Ready ◽  
Anna M. Akerstedt
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Family Caregivers ◽  
Daily Diary ◽  
Poor Sleep ◽  
Multilevel Mediation ◽  
Diary Data ◽  
Retrospective Reports ◽  
Disease Associations ◽  
Sleep Behaviors

Poor sleep in persons with Alzheimer’s disease (AD) is a common stressor for family caregivers. Retrospective reports support associations between sleep disturbance in persons with AD and worse caregiver mood; however, prospective associations between sleep in persons with AD and caregiver outcomes have not been studied. The current study determined associations between affect and sleep of persons with AD and their caregivers using daily diary data. Multilevel mediation models indicated that sleep in persons with AD is linked to caregiver affect; furthermore, these associations are mediated by sleep characteristics in caregivers and affect in persons with AD. Daily fluctuations in sleep behaviors in persons with AD—rather than average values—were most strongly associated with caregiver outcomes. Interventions to improve sleep in persons with AD may decrease their negative affect and improve caregiver mood.

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