Longitudinal costs of caring for people with Alzheimer's disease

2014 ◽  
Vol 27 (5) ◽  
pp. 847-856 ◽  
Author(s):  
Paddy Gillespie ◽  
Eamon O’Shea ◽  
John Cullinan ◽  
Jacqui Buchanan ◽  
Joel Bobula ◽  
...  

ABSTRACTBackground:There has been an increasing interest in the relationship between severity of disease and costs in the care of people with dementia. Much of the current evidence is based on cross-sectional data, suggesting the need to examine trends over time for this important and growing cohort of the population.Methods:This paper estimates resource use and costs of care based on longitudinal data for 72 people with dementia in Ireland. Data were collected from the Enhancing Care in Alzheimer's Disease (ECAD) study at two time points: baseline and follow-up, two years later. Patients’ dependence on others was measured using the Dependence Scale (DS), while patient function was measured using the Disability Assessment for Dementia (DAD) scale. Univariate and multivariate analysis were used to explore the effects of a range of variables on formal and informal care costs.Results:Total costs of formal and informal care over six months rose from €9,266 (Standard Deviation (SD): 12,947) per patient at baseline to €21,266 (SD: 26,883) at follow-up, two years later. This constituted a statistically significant (p = 0.0014) increase in costs over time, driven primarily by an increase in estimated informal care costs. In the multivariate analysis, a one-point increase in the DS score, that is a one-unit increase in patient's dependence on others, was associated with a 19% increase in total costs (p = 0.0610).Conclusions:Higher levels of dependence in people with Alzheimer's disease are significantly associated with increased costs of informal care as the disease progresses. Formal care services did not respond to increased dependence in people with dementia, leaving it to families to fill the caring gap, mainly through increased supervision with the progress of disease.

2021 ◽  
pp. 1-12
Author(s):  
Heng Zhang ◽  
Diyang Lyu ◽  
Jianping Jia ◽  

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.


Author(s):  
Slavica Djukic-Dejanovic ◽  
Gorica Djokic

Serbia is among the demographically older countries in the world, with 18% of the population aged above 65 years. One in two persons older than 65 years lives with an old spouse. The Serbian National Strategy on ageing identified poverty as a widespread companion of ageing, with a rising poverty index. In 2007, the first non-governmental organization, called ‘Alchajmer’, was established in Sremska Kamenica to support people with Alzheimer’s disease and their caregivers. In 2008, the first Centre for Memory Disorders and Dementia was established as part of the Neurology Clinic at the Clinical Centre of Serbia in Belgrade. A National Guide for Alzheimer’s disease was published in 2013. The Serbian health insurance scheme covers care costs for people with severe dementia through its support programme called Advanced Home Help, which includes provision of geriatric housekeepers from the palliative care programme, as well as modest financial support in accordance with the state’s financial capabilities. There are over 160,000 people with dementia in Serbia, comprising approximately 13% of the Serbian population aged above 65 years, of whom only 4% are prescribed appropriate pharmacological treatment.


2019 ◽  
Vol 34 (2) ◽  
pp. 108-118 ◽  
Author(s):  
Yusuke Okada ◽  
◽  
Takashi Kato ◽  
Kaori Iwata ◽  
Yasuyuki Kimura ◽  
...  

Abstract Objective The objectives of the present study were to investigate (1) whether trinary visual interpretation of amyloid positron emission tomography (PET) imaging (negative/equivocal/positive) reflects quantitative amyloid measurements and the time course of 11C-Pittsburgh compound B (PiB) amyloid accumulation, and (2) whether visually equivocal scans represent an early stage of the Alzheimer’s disease (AD) continuum in terms of an intermediate state of quantitative amyloid measurements and the changes in amyloid accumulation over time. Methods From the National Bioscience Database Center Human Database of the Japanese Alzheimer’s Disease Neuroimaging Initiative, we selected 133 individuals for this study including 33 with Alzheimer’s disease dementia (ADD), 52 with late mild cognitive impairment (LMCI), and 48 cognitively normal (CN) subjects who underwent clinical assessment, PiB PET, and structural magnetic resonance imaging (MRI) with 2 or 3-years of follow-up. Sixty-eight of the 133 individuals underwent cerebrospinal fluid amyloid-β1-42 (CSF-Ab42) analysis at baseline. The standard uptake value ratio (SUVR) of PiB PET was calculated with a method using MRI at each visit. The cross-sectional values, longitudinal changes in SUVR, and baseline CSF-Ab42 were compared among groups, which were categorized based on trinary visual reads of amyloid PET (negative/equivocal/positive). Results From the trinary visual interpretation of the PiB PET images, 55 subjects were negative, 8 were equivocal, and 70 were positive. Negative interpretation was most frequent in the CN group (70.8/10.4/18.8%: negative/equivocal/positive), and positive was most frequent in the LMCI group (34.6/1.9/63.5%) and in the ADD group (9.1/6.1/84.8%). The baseline SUVRs were 1.08 ± 0.06 in the negative group, 1.23 ± 0.15 in the equivocal group, and 1.86 ± 0.31 in the positive group (F = 174.9, p < 0.001). The baseline CSF-Ab42 level was 463 ± 112 pg/mL in the negative group, 383 ± 125 pg/mL in the equivocal group, and 264 ± 69 pg/mL in the positive group (F = 37, p < 0.001). Over the 3-year follow-up, annual changes in SUVR were − 0.00 ± 0.02 in the negative group, 0.02 ± 0.02 in the equivocal group, and 0.04 ± 0.07 in the positive group (F = 8.4, p < 0.001). Conclusions Trinary visual interpretation (negative/equivocal/positive) of amyloid PET imaging reflects quantitative amyloid measurements evaluated with PET and the CSF amyloid test as well as the amyloid accumulation over time evaluated with PET over 3 years. Subjects in the early stage of the AD continuum could be identified with an equivocal scan, because they showed intermediate quantitative amyloid PET, CSF measurements, and the amyloid accumulation over time.


2014 ◽  
Vol 27 (1) ◽  
pp. 95-102 ◽  
Author(s):  
Asmus Vogel ◽  
Frans Boch Waldorff ◽  
Gunhild Waldemar

ABSTRACTBackground:Longitudinal changes in awareness in dementia have been studied with short follow-up time and mostly in small patient groups (including patients with moderate dementia). We investigated awareness in patients with mild Alzheimer's disease (AD) over 36 months and studied if a decline in awareness was associated with decline in cognition and increase in neuropsychiatric symptoms.Methods:Awareness was measured on a categorical scale in 95 AD patients (age ≥50 years, Mini-Mental State Examination (MMSE) score ≥20). Awareness was rated at three time points (follow-up at 12 and 36 months) where MMSE, Neuropsychiatric Inventory (NPI-Q), and Cornell scale for Depression in Dementia also were applied.Results:At 12 months, 26% had lower awareness rating as compared to baseline and at 36 months lower awareness ratings were found in 39%. At both visits, 16% had higher awareness rating as compared to baseline. Patients with lower awareness at 36 months as compared to baseline had a more rapid increase in NPI-Q score (p = 0.002) over 36 months as compared to patients with stable or improved awareness over 36 months. A more rapid decline in MMSE score was observed for patients with lower awareness at 36 months (as compared to baseline) but only when compared to patients in whom awareness improved over time.Conclusions:The results show essentially no clear relationship between cognitive decline over three years and awareness. In some cases, awareness remained stable or even improved despite significant cognitive decline. In the subgroup where awareness declined over time, overall ratings of neuropsychiatric symptoms declined more rapidly than in the remaining patients.


2021 ◽  
pp. 1-11
Author(s):  
Chris J. Edgar ◽  
Eric Siemers ◽  
Paul Maruff ◽  
Ronald C. Petersen ◽  
Paul S. Aisen ◽  
...  

Background: There is a need for feasible, scalable assessments to detect cognitive impairment and decline. The Cogstate Brief Battery (CBB) is validated for Alzheimer’s disease (AD) and in unsupervised and bring your own device contexts. The CBB has shown usability for self-completion in the home but has not been employed in this way in a multisite clinical trial in AD. Objective: The objective of the pilot was to evaluate feasibility of at-home, self-completion of the CBB in the Alzheimer’s Disease Neuroimaging Initiative (ADNI) over 24 months. Methods: The CBB was included as a pilot for cognitively normal (CN) and mild cognitive impairment (MCI) participants in ADNI-2, invited to take the assessment in-clinic, then at at-home over a period of 24 months follow-up. Data were analyzed to explore acceptability/usability, concordance of in-clinic and at-home assessment, and validity. Results: Data were collected for 104 participants (46 CN, 51 MCI, and 7 AD) who consented to provide CBB data. Subsequent analyses were performed for the CN and MCI groups only. Test completion rates were 100%for both the first in-clinic supervised and first at-home unsupervised assessments, with few repeat performances required. However, availability follow-up data declined sharply over time. Good concordance was seen between in-clinic and at-home assessments, with non-significant and small effect size differences (Cohen’s d between -0.04 and 0.28) and generally moderate correlations (r = 0.42 to 0.73). Known groups validity was also supported (11/16 comparisons with Cohen’s d≥0.3). Conclusion: These data demonstrate the feasibility of use for the CBB for unsupervised at-home, testing, including MCI groups. Optimal approaches to the application of assessments to support compliance over time remain to be determined.


2008 ◽  
Vol 27 (1) ◽  
pp. 1-20 ◽  
Author(s):  
Carolyn W. Zhu ◽  
Rebecca Torgan ◽  
Nikolaos Scarmeas ◽  
Marilyn Albert ◽  
Jason Brandt ◽  
...  

2018 ◽  
Vol 30 (10) ◽  
pp. 1499-1507 ◽  
Author(s):  
Stephanie Behrens ◽  
Gail B. Rattinger ◽  
Sarah Schwartz ◽  
Joshua Matyi ◽  
Chelsea Sanders ◽  
...  

ABSTRACTBackground:The use of FDA approved medications for Alzheimer's disease [AD; FDAAMAD; (cholinesterase inhibitors and N-methyl-D-aspartate receptor antagonists)] has been associated with symptomatic benefit with a reduction in formal (paid services) and total costs of care (formal and informal costs). We examined the use of these medications and their association with informal costs in persons with dementia.Method:Two hundred eighty participants (53% female, 72% AD) from the longitudinal, population-based Dementia Progression Study in Cache County, Utah (USA) were followed up to ten years. Mean (SD) age at baseline was 85.6 (5.5) years. Informal costs (expressed in 2015 dollars) were calculated using the replacement cost method (hours of care multiplied by the median wage in Utah in the visit year) and adjusted for inflation using the Medical Consumer Price Index. Generalized Estimating Equations with a gamma log-link function were used to examine the longitudinal association between use of FDAAMAD and informal costs.Results:The daily informal cost for each participant at baseline ranged from $0 to $318.12, with the sample median of $9.40. Within the entire sample, use of FDAAMAD was not significantly associated with informal costs (expβ = 0.73, p = 0.060). In analyses restricted to participants with mild dementia at baseline (N = 222), use of FDAAMAD was associated with 32% lower costs (expβ = 0.68, p = 0.038).Conclusions:Use of FDAAMAD was associated with lower informal care costs in those with mild dementia only.


BMJ Open ◽  
2019 ◽  
Vol 9 (7) ◽  
pp. e026733 ◽  
Author(s):  
Takayo Nakabe ◽  
Noriko Sasaki ◽  
Hironori Uematsu ◽  
Susumu Kunisawa ◽  
Anders Wimo ◽  
...  

ObjectiveThe purpose of this study was to clarify the microlevel determinants of the economic burden of dementia care at home in Japanese community settings by classifying them into subgroups of factors related to people with dementia and their caregivers.DesignA cross-sectional online survey.Participants4313 panels of Japanese research company who fulfilled the following criteria: (1) aged 30 years or older, (2) non-professional caregiver of someone with dementia, (3) caring for only one person with dementia and (4) having no conflicts of interest with advertising or marketing research entities.Primary outcome measuresInformal care costs and out-of-pocket payments for long-term care (LTC) services.ResultsFrom 4313 respondents, only 1383 caregivers in community-settings were included in this analysis. We conducted a χ² automatic interaction detection analysis to identify the factors related to each cost (informal care costs and out-of-pocket payments for LTC services) divided into subcategories. In the resultant classifications, informal care cost was mainly related to caregivers’ employment status. When caregivers acquired family care leave, informal care costs were the highest. On the other hand, out-of-pocket payments for LTC were related to care-need levels and family economic status. Activities of Daily Living and Instrumental Activities of Daily Living functions such as bathing, toileting and cleaning were related to all costs.ConclusionThis study clarified the difference in dementia care costs between classified subgroups by considering the combination of the situations of both people with dementia and their caregivers. Informal care costs were related to caregivers’ employment and cohabitation status rather to the situations of people with dementia. On the other hand, out-of-pocket payments for LTC services were related to care-need levels and family economic status. These classifications will be useful in understanding which situation represents a greater economic burden and helpful in improving the sustainability of the dementia care system in Japan.


2021 ◽  
pp. 1-9
Author(s):  
Natalia Altomari ◽  
Francesco Bruno ◽  
Valentina Laganà ◽  
Nicoletta Smirne ◽  
Rosanna Colao ◽  
...  

Background: Behavioral and psychological symptoms of dementia (BPSD) have a large impact on the quality of life of patients with Alzheimer’s disease (AD). Few studies have compared BPSD between early-onset (EOAD) and late-onset (LOAD) patients, finding conflicting results. Objective: The aims of this study were to: 1) characterize the presence, overall prevalence, and time of occurrence of BPSD in EOAD versus LOAD; 2) estimate the prevalence over time and severity of each BPSD in EOAD versus LOAD in three stages: pre-T0 (before the onset of the disease), T0 (from onset to 5 years), and T1 (from 5 years onwards); 3) track the manifestation of BPSD sub-syndromes (i.e., hyperactivity, psychosis, affective, and apathy) in EOAD versus LOAD at T0 and T1. Methods: The sample includes 1,538 LOAD and 387 EOAD diagnosed from 1996 to 2018. Comprehensive assessment batteries, including the Neuropsychiatric Inventory (NPI), were administered at the first medical assessment and at different follow-up period. Results: The overall prevalence for the most of BPSD was significantly higher in EOAD compared to LOAD whereas most BPSD appeared significantly later in EOAD patients. Between the two groups, from pre-T0 to T1 we recorded a different pattern of BPSD prevalence over time as well as for BPSD sub-syndromes at T0 and T1. Results on severity of BPSD did not show significant differences. Conclusion: EOAD and LOAD represent two different forms of a single entity not only from a neuropathological, cognitive, and functional level but also from a psychiatric point of view.


2020 ◽  
Vol 124 (12) ◽  
pp. 1264-1276
Author(s):  
Sharmin Hossain ◽  
May A. Beydoun ◽  
Jordan Weiss ◽  
Marie F. Kuczmarski ◽  
Michele K. Evans ◽  
...  

AbstractPoor diet quality (DQ) is associated with poor cognition and increased neurodegeneration, including Alzheimer’s disease (AD). We are interested in the role of DQ on cognitive functioning (by sex and increasing genetic risk for AD), in a sample of African American (AA) middle-aged adults. We analysed a sub-group of participants (about 55 % women; mean follow-up time of about 4·7 years) from the Healthy Aging in Neighborhoods of Diversity across the Life Span study with a genetic risk score for AD (hAlzScore). The Healthy Eating Index-2010, Dietary Approaches to Stop Hypertension and the mean adequacy ratio computed at baseline (2004–2009) and follow-up visits (2009–2013) were used to assess initial DQ and change over time. Linear mixed-effects regression models were utilised, adjusting for select covariates, selection bias and multiple testing. DQ change (ΔDQ) was associated with California Verbal Learning Test-List A – overall (0·15 (se 0·06), P = 0·008) and in women (0·21 (se 0·08), P = 0·006), at highest AD risk, indicating protective effects over time. Greater AD risk was longitudinally associated with poorer Clock Command Test scores in men. Poor DQ was positively and cross-sectionally associated with Trails B scores, but in women only. Better-quality diet was associated with a slower decline in verbal memory among AA women, with greater AD risk. Insufficient clinical evidence and/or mixed findings dictate that more studies are needed to investigate brain morphology and volume changes in relation to DQ in an at-risk population for AD, over time.


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