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Differences in Awareness of Disease Between Young-onset and Late-onset Dementia

Baptista, Maria A.T. MSc*; Santos, Raquel L. PhD*; Kimura, Nathália MSc*; Marinho, Valeska PhD*; Simões, José P. PhD; Laks, Jerson PhD*; Johannenssen, Aud PhD; Barca, Maria L. PhD; Engedal, Knut PhD; Dourado, Marcia C.N. PhD*

Alzheimer Disease & Associated Disorders: April–June 2019 - Volume 33 - Issue 2 - p 129–135
doi: 10.1097/WAD.0000000000000299
Original Articles

Introduction: Awareness of disease is the ability to acknowledge changes caused by deficits related to the disease process. We aimed to investigate whether there are differences in awareness of disease between young-onset dementia (YOD) and late-onset dementia (LOD) and examined how awareness interacts with cognitive and clinical variables.

Materials and Methods: Using a cross-sectional design, 49 people with YOD and 83 with LOD and their caregivers were included. We assessed awareness of disease, cognition, functionality, stage of dementia, mood, neuropsychiatric symptoms, and caregivers’ quality of life (QoL) and burden.

Results: We found that people with YOD were more aware of the disease than people with LOD (P<0.005). Multivariate linear regression revealed that higher impairment in functional level was associated with unawareness in both groups (YOD=P<0.001; LOD=P<0.001). In the YOD group, preserved awareness was related to worse self-reported QoL (P<0.05), whereas, in LOD, deficits in awareness were related to caregivers’ worst perceptions about people with dementia QoL (P<0.001).

Conclusions: The findings highlight the distinct nature of awareness between YOD and LOD. The YOD group had higher levels of disease awareness compared with the LOD group, even though the first group had a greater impairment in functionality.

*Center for Alzheimer’s disease and Related Disorders, Institute of Psychiatry, Universidade Federal do Rio de Janeiro

Department of Political Sociology, Universidade Federal de Santa Catarina, Florianópolis, Brazil

Norwegian Centre for Aging and Health, Vestfold Health Trust, Tønsberg, Norway

Supported by the Fundação Carlos Chagas Filho de Amparo à Pesquisa do Estado do Rio de Janeiro (FAPERJ), grant 201.777/2017. M.C.N.D. and J.L. are researchers funded by Conselho Nacional de Pesquisa (CNPq).

The authors declare no conflicts of interest.

Reprints: Maria A.T. Baptista, MD, Rua Barata Ribeiro, 383/804, Copacabana, Rio de Janeiro, RJ 22040-001, Brazil (e-mail:

Received May 12, 2018

Accepted January 7, 2019

Awareness of disease has been a growing area of interest in both the clinical treatment and research in dementia.1 It can be defined as the recognition of changes caused by deficits related to the disease process. It may include the ability to recognize a specific cognitive deficit, emotional response to difficulties, or the ability to understand the impact of the disease on activities of daily living and behavior.2 Awareness may be preserved, partially or totally affected, and may also oscillate.3 Impaired disease awareness is estimated to be present in 80% of people with Alzheimer disease (AD).4 Awareness tends to worsen as dementia becomes more severe,5 and several factors have been associated with impairment, such as older age, worse functional ability, and neuropsychiatric symptoms.6 Conversely, a well-preserved awareness of disease has been associated with depressive symptoms and anxiety.1,5 It must be highlighted that the vast majority of studies on awareness of disease are focused on individuals with late-onset dementia (LOD), with relatively few focusing specifically on individuals with young-onset dementia (YOD).

YOD affects younger people aged 65 years or younger.7,8 The most frequent cause is AD, followed by vascular and frontotemporal dementia, respectively.9,10 Behavioral changes and neuropsychological impairments vary according to each cause and severity of dementia. In cases of young-onset AD, there is greater initial loss of cognitive abilities, more significantly on attention, visuospatial function, motor-executive functions, and language.10 In contrast, in late-onset AD, short-term memory loss is known to be prominent.10 Most studies suggest that another marked difference is that people with young-onset AD tend to have a steeper disease trajectory relative to those with LOD.11

The notion that people with YOD have more preserved awareness of disease seems reasonable. They are confronted with more challenging activities, an environment that demands more of them, and loss of roles and status related to the disease. Usually, people with YOD are still actively employed at the time of diagnosis.12 They may be the main financial providers of the family (which can cause a severe financial stressor), may still have dependent children, drive vehicles, and are most often physically healthy.5,12 They have to cope with social challenges, which result in a greater and different impact on their lives.8 Some studies have found an association between younger age of symptom onset and increased awareness of disease, but most of these studies did not focus on YOD specifically.1,5,13

There are 2 studies comparing awareness of disease among people with YOD and LOD. van Vliet et al5 found that people with young-onset AD have higher levels of awareness and more associated depressive symptoms relative to those with late-onset AD. Conversely, Dourado et al14 did not find significant differences in awareness of disease between the 2 groups studied, nor an association between awareness and depressive symptoms. However, functional impairment predicted lack of awareness in the LOD group but not in the YOD group.14

YOD represents an important clinical and psychosocial problem, with specific adverse consequences for these individuals and their families.5,11 Unfortunately, there is a significant shortage of studies addressing the topic of awareness in YOD. Understanding the mechanism of awareness of disease in YOD can provide important information about whether individuals are at greater risk of developing emotional reactions, which may compromise their quality of life (QoL) and that of their caregivers. This study aimed to assess whether there are differences in awareness of disease between individuals with YOD and LOD; also, we aimed to examine associations between awareness of disease and cognition, functionality, people with dementia (PwD) and caregivers’ QoL, neuropsychiatric symptoms, mood, and caregiver burden. Our primary hypothesis was that individuals with YOD are more aware of the disease than individuals with LOD. Understanding the mechanism of awareness of disease in YOD can provide information about whether these people are at greater risk of developing emotional reactions, which may compromise their QoL and that of their caregivers.

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This study had a cross-sectional design.

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A consecutive series of 132 people with AD and vascular dementia (49 YOD and 83 LOD) and their caregivers were selected from an AD outpatient unit. On the basis of the information provided by the caregiver, PwD were characterized according to their age at onset of the disease (below 65 y of age vs. 65 and above) in the YOD or LOD groups, respectively. The participants were diagnosed with possible or probable AD or vascular dementia according to Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Revised (DSM-IV-TR).15 A psychiatrist made the clinical diagnosis of AD using clinical interviews with the PwD and their caregivers, cognitive screening tests, laboratory tests, and imaging. Only individuals with mild and moderate dementia according to the clinical dementia rating16 and Mini-Mental State Examination (MMSE)17,18 scores of 11 to 26 were included in the study. People with aphasia, alcohol abuse, head trauma, and epilepsy were excluded. Comorbidities, including hypothyroidism, hypertension, smoking, hypercholesterolemia, mitral valve prolapse, and diabetes were monitored. These comorbidities were constantly monitored to avoid including people with some type of problem that may influence testing. The primary family caregiver was defined as the person most responsible for the care of the person with dementia. All caregivers had been previously informed of the diagnosis by the psychiatrist.

The study was approved by the Ethics in Research Committee of the Institute of Psychiatry (IPUB) of the Universidade Federal do Rio de Janeiro (UFRJ). All PwD and their caregivers signed the written informed consent, which was obtained at study entry.

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PwD Measurements

Awareness of Disease. The Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD) is a multidimensional 30-question scale based on dyad (PwD and caregivers) reports. It was designed to evaluate awareness of disease through the scoring of discrepant responses between patients and caregivers across domains including awareness of cognitive functioning and health condition, awareness of instrumental and basic activities of daily living, awareness of emotional state, and awareness of social functioning and relationships. The caregiver answered the same questions as the PwD. The awareness score was based on the degree of discrepancy between the PwD and caregiver dyad responses, with 1 point scored for each discrepant response. The ratings of awareness ranged from preserved (0 to 4), mildly impaired (5 to 11), moderately impaired (12 to 17), to absent (over 18). The Cronbach α was high (0.87), indicating excellent internal consistency.2

Cognition. The MMSE includes tasks of orientation, registration, short-term memory, language use, comprehension, and basic motor skills. The total score ranges from 0 to 30. Lower scores indicate more impaired cognition.17,18

Dementia Severity. The severity of dementia was measured with the clinical dementia rating, with stages ranging from 0 (no dementia) to 3 (severe dementia) according to cognitive, behavioral, and ADL impairment.16 A higher score denotes more severe dementia.

Functionality. The Pfeffer Functional Activities Questionnaire (PFAQ) is a caregiver-reported inventory that evaluates activities of daily living. The ratings for each item ranges from normal (0) to dependent (3), with a total of 30 points. Higher scores indicate worse functional status.19,20

Neuropsychiatric Symptoms. The Neuropsychiatric Inventory (NPI) evaluates the presence of delusions, hallucinations, dysphoria, anxiety, agitation/aggression, euphoria, disinhibition, irritability/lability, apathy, aberrant motor activity, night-time behavior disturbances, and appetite and eating abnormalities. Each item is rated in relation to their frequency as 1 (absent) to 4 (frequently) and in relation to intensity as 1 (mild) to 3 (severe). Ratings are given by the caregiver. The total score can range from 0 to 144 points.21,22 A higher score indicates more severe behavioral symptoms.

Depressive Symptoms. The Cornell Scale for Depression in Dementia (CSDD) assesses mood symptoms, physical symptoms, circadian functions, and behavioral symptoms related to depression. Scores above 13 indicate the presence of depression.23,24

QoL. The Quality of Life in Alzheimer disease (QoL-AD) scale is a 13-item measure of QoL that is completed by both the PwD and the caregiver. This questionnaire was developed specifically for the assessment of QoL in PwD. The QoL-AD includes 13 domains: physical health, energy, mood, living situation, memory, family, marriage, friends, chores, fun, money, self, and life as a whole. The 13 domains are rated as poor (1), fair (2), good (3), or excellent (4), and the total score ranges from 13 to 52, with higher scores indicating greater QoL. Ratings of the PwD (QoL-AD), the caregivers’ ratings of the PwD’s QoL (QoL-AD1), and the caregivers’ ratings of their own (QoL-AD2) were analyzed separately.25 A higher score indicates better QoL.

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Caregiver Assessments

Burden. The Zarit Burden Interview (ZBI) contains 22 items. The caregiver assesses the impact of the PwD’s illness on his/her life by indicating how often he/she experiences a particular feeling: never (0), rarely (1), sometimes (2), quite frequently (3), or nearly always (4). Scores range from 0 to 88, with higher scores indicating higher level of burden.26,27

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Statistical Analyses

All statistical analyses were performed with SPSS software for Windows version 22.0. The sociodemographic data of the PwD and caregiver dyads (sex, age, level of education, marital status, and kinship) and the clinical characteristics (age of onset, duration and severity of illness, awareness of disease, QoL, cognition, functionality, depressive symptoms, neuropsychiatric symptoms, and caregiver burden) were analyzed with descriptive statistics. The parametric variables were described by their mean and SD, but the nonparametric variables by their frequency and percentages.

Initially, all the descriptive statistics were evaluated, calculating mean, SD, and percentages according to the type of variable (continuous or categorical). Normality was investigated (Kolmogorov-Smirnov was performed). Next, the data were subdivided between YOD and LOD, and statistics performed for each group separately. Depending on the variable of interest, we utilized t tests for independent samples (with Homoscedasticity test), and the χ2 test, the Fischer exact test, or the Mann-Whitney U test to test for significant group differences. The Spearman correlation was used to investigate the associations between ASPIDD and the clinical variables (QoL, cognition, functionality, depressive symptoms, neuropsychiatric symptoms, and caregiver burden) in both groups. The correlations were interpreted as follows: correlation coefficients on the order of 0.10 were small, those of 0.30 were medium, and those of 0.50 were large in terms of magnitude of effect sizes.

Linear regressions were run for the variables that were significantly correlated to identify the factors associated with ASPIDD in YOD and LOD. Linear regressions were conducted using the enter method.

The best models were selected according to a trade-off between highest explained variance (R2) and the highest cross validity (adjusted R2). All significant tests were performed at a 2-tailed level that was P≤0.05.

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Sociodemographic Characteristics

People With YOD-caregiver Dyad

The 49 individuals with YOD had a mean age of 63.2 (SD=7.02), with 9.7 years (SD=4.04) of education, and 53.1% were female individuals (N=26), and most were married (59.2%, N=29). The mean age of disease onset was 58.1 (SD=5.87), and duration of disease was ∼5.1 (SD=2.99) years. Most individuals with YOD were in the mild stage of the disease (61.2%, N=30). The mean age of the caregivers was 54.9 (SD=15.52), and 75.5% (N=37) were female individuals. The majority of the caregivers were spouses of the PwDs (53.1%, N=26), with a mean education level of 13.1 (SD=3.65) years.

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People With LOD-caregiver Dyad

The 83 individuals with LOD had a mean age of 80.2 (SD=4.91), with 7.4 years (SD=3.89) of education, and 66.3% were female individuals (N=55), and 43.4% (N=36) were married (44.6%; N=37 were widowed). The mean age of disease onset was 75.6 (SD=5.27), and the duration of disease was ∼4.6 (SD=3.09) years. Most individuals with LOD were in a mild stage of the disease (61.4%, N=51). The mean age of the caregivers was 58.7 (SD=13.35), and 84.3% (N=70) of them were female individuals. The majority of the caregivers were adult children of the individuals with LOD (57.8%, N=48), with a mean education level of 12.0 (SD=2.87) years.

The comparison between young-onset and LOD PwD-caregiver dyads’ sociodemographic characteristics is presented in Table 1.



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Clinical Characteristics of PwD-caregiver Dyads in the YOD and LOD Groups

Individuals with YOD were more aware of their disease than people with LOD (P<0.005). They had a tendency to score higher on depressive symptoms (P=0.06). We did not find any other significant difference between the other clinical variables. The differences between the clinical characteristics of both groups are summarized in Table 2.



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Factors Related to Disease Awareness in Individuals With YOD and LOD and Their Caregivers

Univariate Analysis

Among individuals with YOD awareness, the total score was significantly correlated to dementia severity (r=0.342; P<0.05), cognition MMSE (r=−0.358; P<0.05), self-reported QoL (r=0.319; P<0.05), neuropsychiatric symptoms (r=0.352; P<0.05), daily functioning (r=0.540; P<0.001), and caregiver burden (r=0.308; P<0.05).

Among individuals with LOD, disease awareness was significantly correlated to dementia severity (r=0.362; P<0.01), cognition MMSE (r=−0.334; P<0.01), caregivers’ ratings of the PwD’s QoL (r=−0.576; P<0.001), neuropsychiatric symptoms (r=0.512; P<0.001), depressive symptoms (r=0.319; P<0.01), daily functioning (r=0.597; P<0.001), and caregiver burden (r=0.353; P<0.001).

The correlations between awareness and the variables for YOD and LOD groups are shown in Tables 3 and 4.





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Multivariate Analyses

Multivariate linear regression examined the association between ASPIDD total score and the variables that were significantly correlated.

In the YOD group, awareness was significantly associated with impairment in functional level (P<0.001) and worse self-reported QoL (P<0.05). The final model explained 39% of the observed variance (P<0.001). The adjusted R2 values and the standardized regression weights are presented in Table 5.



In the LOD, deficits in awareness were significantly associated with impairment in functional activity (P<0.001) and caregivers’ worst perceptions of the individual with LOD QoL (P<0.001). The final model explained 49% of the observed variance (P<0.001). The adjusted R2 values and the standardized regression weights are also presented in Table 5.

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This study investigated whether there are differences in awareness of disease between individuals with YOD and LOD. Moreover, we aimed to assess the relationship between clinical factors and awareness among individuals with YOD and those with LOD and their respective caregivers. As hypothesized, individuals with YOD had greater levels of awareness compared with the LOD group. Our findings are consistent with previous studies that have found that younger age of disease onset is associated with greater awareness.1,13,28 In one of our previous studies,14 we did not find a significant difference in awareness among those groups; this was presumably because the YOD sample had a high mean age at disease onset, and its lack of variation in the age at onset hampered the assessment of awareness. Restrictions that were solved in the YOD sample of the current study, and probably explain the different findings.

There are several possible reasons that might account for the difference in awareness among the YOD and LOD groups in the present study. YOD individuals might have increased awareness due to the losses in role and status that do no not affect the LOD group as much.5,12,29 More specifically, individuals with YOD remain in the labor market, they are providers, parents, and are still actively driving at the time of diagnosis.5,12,29,30 Individuals with YOD face unique social challenges, which go beyond those of older people, and have more internally imposed and societal-imposed demands.8 Increased awareness might also be partially explained by the atypical cognitive profile of individuals with YOD who often have more preserved memory initially at the time of diagnosis relative to those with LOD.5,30 Another possible explanation could be that older PwDs tend to attribute their own forgetfulness to being normal, as opposed to due to a disease process.

Daily functioning was strongly associated with awareness in both groups. Specifically, in both the YOD and LOD groups, impairment in functional level was associated with unawareness. This result is inconsistent with the findings of Dourado et al,14 in which impairment in the functional level was associated with unawareness in LOD but not in YOD. This is likely related to the fact that the 2 groups in our study did not differ significantly in terms of their daily functioning, and they were more advanced in terms of disease stage and functional challenges relative to the Dourado et al’s study.14 This finding highlights the importance of continued investigations into age of onset and level of functional impairment on awareness in individuals with YOD.

Another important finding from our study was that awareness was associated with QoL in the YOD. In the YOD group, awareness of disease was more positively associated with self-reported QoL than in the LOD group (ie, people with more preserved awareness of disease rated their QoL as worse). QoL involves a subjective perception related to physical, social, and psychological variables. This finding is in line with other studies,6,14,31,32 and it may indicate the specific social context and the burden of being aware of deficits in individuals with YOD, which leads to an adverse effect on the well-being of people with YOD and may negatively influence their QoL.31 Conversely, in the LOD group, it was the caregivers’ perception of the PwD’s QoL that was negatively related to awareness. Hence, in LOD, the more compromised the awareness of PwD is, the worse the evaluation of the caregiver about the person’s QoL. Others have suggested that among caregivers, the presence of compromised awareness had a negative effect on their ratings of the PwD’s QoL.6,33,34 The association between lower awareness by the PwD and more negative evaluation of the caregiver about the PwD’s QoL can be explained by the fact that the PwD with compromised awareness may also present with more neuropsychiatric symptoms and dangerous behaviors, as well as greater difficulties with treatment adherence. Caregivers face difficulties in management35 and thus have increased burden.6,36 Consequently, caregivers also rate the PwD’s QoL as worse than that of the general population.14

Some studies have reported that in comparison with people with LOD, people with YOD show a more pronounced effect of preserved awareness in association with depressive symptoms.5,37 This finding may support the idea that the psychosocial context of YOD possibly leads to higher frequency of depressive symptoms. In most cases of YOD, people may be depressed because of the awareness of their own situation.38 Surprisingly, we did not find a relationship between awareness and depressive symptoms in the YOD group. Studying the differences in clinical variables among both groups, Rosness and colleagues observed that 65.7% of a sample of 221 people with YOD had mild or moderate depression. We found a tendency for the YOD group to present with more depressive symptoms than the LOD group. The lack of association between awareness and depressive symptoms as well as the tendency of depression in the YOD group may be explained by 2 potential limitations of the current study, which must be considered. We included a relatively small sample size of people with YOD, which might make the analyses underpowered. In addition, the sample was collected at an outpatient center for dementia, and all PwD were under medical treatment, which may have minimized neuropsychiatric and depressive symptoms, and made it difficult for the results to be generalized to community-dwelling individuals with dementia.

YOD is becoming an increasingly important social and public health challenge. However, many countries lack specific services and strategies focused on individuals with YOD.11 Increasing knowledge about the disease and its possible impact on individuals’ lives will hopefully improve recognition of and access to specific health care services tailored to individuals with YOD.9,39

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The authors thank Dr Rishi Bhalla, PhD, R Psych, Clinical Associate Professor, Department of Psychiatry, University of British Columbia, from the Research and Editing Consulting Program (RECP), for the careful revision of the manuscript and editing for English language.

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awareness; quality of life; young-onset; dementia

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