Exploring Workload among Informal Caregivers of Persons with Dementia

2017 ◽  
Vol 61 (1) ◽  
pp. 1297-1297
Author(s):  
Rachel Zenker ◽  
Connor Pardell ◽  
Andrea Gilmore-Bykovskyi ◽  
Amy J. H. Kind ◽  
Nicole Werner
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Healthcare Delivery ◽  
Dynamic Environment ◽  
Informal Caregiving ◽  
Resource Scarcity ◽  
Structured Interviews ◽  
Over Time

Background: An estimated 5.3 million Americans are currently living with Alzheimer’s Disease or related dementias (Association 2015). Healthcare delivery for persons with Alzheimer’s Disease or related dementias (PwD), involves both the formal (e.g., physicians, social workers) and informal (e.g., family members, neighbors) work of healthcare. Informal caregiving for PwD totals approximately 18 billion hours of work per year and costs up to 217.7 billion dollars per year in caregiving costs, lost productivity and medical and institutional care (Association 2015). Informal caregivers must execute complex tasks in a dynamic environment often without the necessary information, resources, and training (Allegri, Sarasola et al. 2006, Gitlin, Kales et al. 2012). In addition, informal caregiving requires a physical, emotional, psychological, financial and temporal commitment from the informal caregiver. The confluence of these circumstances has the potential to influence the demands experienced by informal caregivers and the capacity to meet those demands. As informal caregivers increasingly take on healthcare tasks that were previously performed by trained professionals, it is important to understand how the workload experienced by informal caregivers and how it affects caregiving performance. Objective: To explore workload among informal caregivers of PwD to identify the influencers of capacity and demand and understand the interaction between capacity, demand, and caregiver burden. Method: We conducted in-depth semi-structured interviews (N=9) with informal caregivers of PwD to explore the workload among informal caregivers using qualitative thematic analysis. The interview questions related to the understanding of: 1) work performed by informal caregivers 2) strategies, tools, and resources used by informal caregivers 3) unmet needs related to caregiving work and 4) the environment in which the caregiving occurred. Results: We found three overarching themes related to caregiver workload: (1) informal caregiving demands surpass the capacity of any individual informal caregiver; (2) informal caregivers experienced dynamic workload that increased over time (i.e., as the disease progressed) forcing informal caregivers to seek assistance from other formal and informal caregiving resources; and (3) training, information, and resource scarcity is associated with informal caregiver work overload. Conclusions: Our results suggest that informal caregivers experience dynamic workload that increases over time, and that cannot be sustained by one person. Although informal caregivers were able to develop strategies to support workload, due to the progressive nature of the disease, specific strategies were not typically useful over time.

scholarly journals Factors associated with long-term impact on informal caregivers during Alzheimer’s disease dementia progression: 36-month results from GERAS

2019 ◽  
Vol 32 (2) ◽  
pp. 267-277 ◽  
Author(s):  
Catherine Reed ◽  
Mark Belger ◽  
J. Scott Andrews ◽  
Antje Tockhorn-Heidenreich ◽  
Roy W. Jones ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cognitive Decline ◽  
Caregiver Burden ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Community Dwelling ◽  
Caregiver Time ◽  
Factors Associated

ABSTRACTObjective:To identify, in caregivers of patients with Alzheimer’s disease (AD) dementia, factors associated with subjective (personal, physical, emotional, and social) and objective (informal caregiver time and costs) caregiver burden.Design:Prospective longitudinal European observational study: post-hoc analysis.Setting:Clinic.Participants:Community-dwelling patients in France and Germany aged ≥ 55 years (n = 969) with probable AD and their informal caregivers.Measurements:Mini-Mental State Examination (MMSE), Alzheimer’s Disease Cooperative Study—Activities of Daily Living (ADCS-ADL), 12-item Neuropsychiatric Inventory (NPI-12), Zarit Burden Interview (ZBI), informal caregiver basic and instrumental ADL hours (Resource Utilization in Dementia instrument), and informal caregiver costs. Mixed-effect models of repeated measures (MMRM) were run, including baseline and time-dependent covariates (change from baseline [CFB] to 18 months in MMSE, ADCS-ADL, and NPI-12 scores) associated with CFB in ZBI score/informal caregiver time over 36 months (analyzed using linear regression models) and informal caregiver costs over 36 months (analyzed using generalized linear models).Results:Greater decline in patient function (ADCS-ADL) over 18 months was associated with increased subjective caregiver burden (ZBI), hours, and costs over 36 months. Increased behavioral problems (NPI-12) over 18 months also negatively impacted ZBI. Cognitive decline (MMSE) over 18 months did not affect change in caregiver burden.Conclusions:Long-term informal caregiver burden was driven by worsening functional abilities and behavioral symptoms but not cognitive decline, over 18 months in community-dwelling patients with AD dementia. Identifying the drivers of caregiver burden could highlight areas in which interventions may benefit both caregivers and patients.

scholarly journals "Sidelined": Family Caregiver's Experience of the  Emergency Department: Insights from Family Caregivers of People with Alzheimer's Disease

2021 ◽  
Author(s):  
◽  
Sandra Roberta Ridley
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Lived Experience ◽  
Family Caregivers ◽  
Healthcare Professionals ◽  
Care Facility ◽  
Structured Interviews ◽  
Presenting Symptoms ◽  
Information Giving ◽  
Inpatient Settings

<p>Older patients with a cognitive deficit, such as seen in Alzheimer's Disease (AD), have not been extensively researched in ED. Often patients with AD are accompanied by a familiar person such as a family caregiver when they present to an acute care facility. Literature has shown that family caregivers' have reported dissatisfaction with interaction with healthcare professionals in inpatient settings. There is a paucity of research on the experiences family caregivers have in ED. This study explored the experiences of family caregivers of people with Alzheimer's Disease in the ED of a regional hospital in New Zealand. A Hermeneutic phenomenology method was used to bring meaning to the lived experience of family caregivers in the ED. Ricouers Interpretation theory was used to analyse and interpret the data. Six family caregivers were interviewed, using semi-structured interviews, to explore and give meaning to their experience. Findings revealed family caregivers were 'sidelined'; felt invisible, ignored and abandoned by the healthcare professionals in ED. There appeared to be little understanding about dementia symptoms, or the needs of caregivers of people with AD. The experience was distressing for participants who felt they were not able to relay information about their loved one that was pertinent to their health and presenting symptoms. Health Professionals tended to speak directly to their loved ones and not with the participants. Consequently there was a risk of misinformation and poor communication driving treatment decisions for these patients. Participants reported poor information giving and family caregivers were left for long periods of time with no contact, and no support. Despite this, caregivers justified and excused the actions of healthcare professionals. They became passive recipients of process and procedures that were not adequately explained.</p>

The Trajectory of Cerebrospinal Fluid Growth-Associated Protein 43 in the Alzheimer’s Disease Continuum: A Longitudinal Study

2021 ◽  
pp. 1-12
Author(s):  
Heng Zhang ◽  
Diyang Lyu ◽  
Jianping Jia ◽  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Cerebrospinal Fluid ◽  
Amyloid Β ◽  
Dementia Patients ◽  
Positron Emission ◽  
Potential Biomarker ◽  
Synaptic Degeneration ◽  
Over Time

Background: Synaptic degeneration has been suggested as an early pathological event that strongly correlates with severity of dementia in Alzheimer’s disease (AD). However, changes in longitudinal cerebrospinal fluid (CSF) growth-associated protein 43 (GAP-43) as a synaptic biomarker in the AD continuum remain unclear. Objective: To assess the trajectory of CSF GAP-43 with AD progression and its association with other AD hallmarks. Methods: CSF GAP-43 was analyzed in 788 participants from the Alzheimer’s Disease Neuroimaging Initiative (ADNI), including 246 cognitively normal (CN) individuals, 415 individuals with mild cognitive impairment (MCI), and 127 with AD dementia based on cognitive assessments. The associations between a multimodal classification scheme with amyloid-β (Aβ), tau, and neurodegeneration, and changes in CSF GAP-43 over time were also analyzed. Results: CSF GAP-43 levels were increased at baseline in MCI and dementia patients, and increased significantly over time in the preclinical (Aβ-positive CN), prodromal (Aβ-positive MCI), and dementia (Aβ-positive dementia) stages of AD. Higher levels of CSF GAP-43 were also associated with higher CSF phosphorylated tau (p-tau) and total tau (t-tau), cerebral amyloid deposition and hypometabolism on positron emission tomography, the hippocampus and middle temporal atrophy, and cognitive performance deterioration at baseline and follow-up. Furthermore, CSF GAP-43 may assist in effectively predicting the probability of dementia onset at 2- or 4-year follow-up. Conclusion: CSF GAP-43 can be used as a potential biomarker associated with synaptic degeneration in subjects with AD; it may also be useful for tracking the disease progression and for monitoring the effects of clinical trials.

scholarly journals Single-subject grey matter network trajectories over the disease course of autosomal dominant Alzheimer’s disease

2020 ◽  
Vol 2 (2) ◽  
Author(s):  
Lisa Vermunt ◽  
Ellen Dicks ◽  
Guoqiao Wang ◽  
Aylin Dincer ◽  
Shaney Flores ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Symptom Onset ◽  
Grey Matter ◽  
Autosomal Dominant ◽  
Single Subject ◽  
Mutation Carriers ◽  
Autosomal Dominant Alzheimer’S Disease ◽  
Network Properties ◽  
Over Time

Abstract Structural grey matter covariance networks provide an individual quantification of morphological patterns in the brain. The network integrity is disrupted in sporadic Alzheimer’s disease, and network properties show associations with the level of amyloid pathology and cognitive decline. Therefore, these network properties might be disease progression markers. However, it remains unclear when and how grey matter network integrity changes with disease progression. We investigated these questions in autosomal dominant Alzheimer’s disease mutation carriers, whose conserved age at dementia onset allows individual staging based upon their estimated years to symptom onset. From the Dominantly Inherited Alzheimer Network observational cohort, we selected T1-weighted MRI scans from 269 mutation carriers and 170 non-carriers (mean age 38 ± 15 years, mean estimated years to symptom onset −9 ± 11), of whom 237 had longitudinal scans with a mean follow-up of 3.0 years. Single-subject grey matter networks were extracted, and we calculated for each individual the network properties which describe the network topology, including the size, clustering, path length and small worldness. We determined at which time point mutation carriers and non-carriers diverged for global and regional grey matter network metrics, both cross-sectionally and for rate of change over time. Based on cross-sectional data, the earliest difference was observed in normalized path length, which was decreased for mutation carriers in the precuneus area at 13 years and on a global level 12 years before estimated symptom onset. Based on longitudinal data, we found the earliest difference between groups on a global level 6 years before symptom onset, with a greater rate of decline of network size for mutation carriers. We further compared grey matter network small worldness with established biomarkers for Alzheimer disease (i.e. amyloid accumulation, cortical thickness, brain metabolism and cognitive function). We found that greater amyloid accumulation at baseline was associated with faster decline of small worldness over time, and decline in grey matter network measures over time was accompanied by decline in brain metabolism, cortical thinning and cognitive decline. In summary, network measures decline in autosomal dominant Alzheimer’s disease, which is alike sporadic Alzheimer’s disease, and the properties show decline over time prior to estimated symptom onset. These data suggest that single-subject networks properties obtained from structural MRI scans form an additional non-invasive tool for understanding the substrate of cognitive decline and measuring progression from preclinical to severe clinical stages of Alzheimer’s disease.

scholarly journals Pre-Analytical and Within-Person Reproducibility of Nutritional Metabolomics over 2 Years in Elders at Risk for Dementia (P18-121-19)

2019 ◽  
Vol 3 (Supplement_1) ◽  
Author(s):  
Gene Bowman ◽  
Natalia Gouskova ◽  
Hiroko Dodge ◽  
Juliana Donohue ◽  
Aline Bichsel ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Measurement Errors ◽  
Brain Aging ◽  
Intraclass Correlation ◽  
Aging Research ◽  
Blood Samples ◽  
Time Points ◽  
Nutritional Metabolomics ◽  
Over Time

Abstract Objectives Nutritional metabolomics to objectively assess dietary intake in aging permit the opportunity to circumvent measurement errors that accompany subjective means of dietary assessment. At the same time, they may offer insights into mechanisms of action and metabolic disturbances that are actionable targets for modulation through diet in hopes of disease prevention and treatment. However, prior to more broad deployment the pre-analytical and temporal variation over time should be documented in order to design and interpret epidemiological studies properly. We quantified and examined 155 nutrient biomarkers and metabolites selected for their potential relevance to dementia. Methods Blood samples from three time points, spanning a 2-year period, were obtained from older adults participating in the NIA-Layton Oregon Alzheimer's Disease Center's Nutrition and Brain Aging Study (NBAS). Blood samples were batched randomly across three time points for quantification of blood amino acids, minerals, water and fat-soluble micronutrients, lipids, one carbon, and kynurenine pathway metabolites using a variety of methods including, tandem mass spectrometry. Pre-analytical coefficients of variation (CV) were calculated for all the biomarkers and intraclass correlation coefficients (ICC) were calculated to evaluate the within-person reproducibility in a subset of 137 participants. Results The mean baseline age of the analytic sample (n = 137) was 85.6 (± 8.3, 57 - 101 years), 70% are female, 21% carry the ApoEe4 allele and MMSE was 28.3 (± 1.78). The pre-analytical CVs ranged from 0.9% to 55.0% and the ICC ranged from 0 to 0.87 (25%-tile/median/75%-tile 0.41/0.54/0.66). Twenty four % had ICC < 0.40, 66% had ICC 0.40 −0.75 and 10% had ICC > 0.75. Conclusions The pre-analytical and within-person reproducibility of nutritional metabolomics in aging ranges widely. The majority can reliably estimate average concentrations over a 2 year period from a single time point and the biomarkers with ICC's above 0.40 can be used for correction of measurement error and those below 0.40 should consider multiple samples per subject and exploring the methodological and biological explanation for the variation over time. Funding Sources Nestle Institute of Health Sciences, Hinda and Arthur Marcus Institute for Aging Research, NIA-Layton Aging & Alzheimer's Disease Center (P30AGO8017).

Amnestic people with Alzheimer's disease who remembered the Kobe earthquake

1998 ◽  
Vol 172 (5) ◽  
pp. 425-428 ◽  
Author(s):  
Manabu Ikeda ◽  
Etsuro Mori ◽  
Nobutsugu Hirono ◽  
Toru Imamura ◽  
Tatsuo Shimomura ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Emotional Memory ◽  
Memory Retention ◽  
Resonance Imaging ◽  
Structured Interviews ◽  
Emotional Involvement ◽  
Kobe Earthquake ◽  
Factual Content ◽  
Magnetic Resonance Imaging Mri

BackgroundEmotional memory is a special category of memory for events arousing strong emotions. To investigate the effects of emotional involvement on memory retention in individuals with Alzheimer's disease we studied peoples' memories of distressing experiences during a devastating earthquake.MethodFifty-one subjects with probable Alzheimer's disease who experienced the Kobe earthquake at home in the greater Kobe area were studied. Memories of the earthquake were assessed 6 and 10 weeks after the disaster in semi-structured interviews, and were compared with memories of a magnetic resonance imaging (MRI) examination given after the earthquake.ResultsForty-four (86.3%) of the subjects remembered the earthquake and 16 (31.4%) of subjects remembered the MRI experience. Factual content of the earthquake was lost in most of the subjects.ConclusionsFear reinforces memory retention of an episode in subjects with Alzheimer's disease but does not enhance retention of its context, despite repeated exposure to the information.

scholarly journals Comparisons of neurodegeneration over time between healthy ageing and Alzheimer's disease cohorts via Bayesian inference

BMJ Open ◽  
2017 ◽  
Vol 7 (2) ◽  
pp. e012174 ◽  
Author(s):  
Marcela I Cespedes ◽  
Jurgen Fripp ◽  
James M McGree ◽  
Christopher C Drovandi ◽  
Kerrie Mengersen ◽  
...  
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Bayesian Inference ◽  
Healthy Ageing ◽  
Over Time
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