Consequences of Anosognosia on the Cost of Caregivers’ Care in Alzheimer’s Disease

Abstract

Background: Anosognosia is common in patients with Alzheimer’s disease (AD) and it is frequently related to an increase in time of care demand.

Objective: The aim of the study was to examine the effect of anosognosia on the total costs of informal care in patients with AD.

Methods: This was a prospective longitudinal study with community-dwelling AD patients. Anosognosia, time of informal care, and the use of support services (e.g., day care centers) were recorded at baseline and after 24 months. The cost of informal caregiving was calculated as ‘market price’.

Results: At baseline, the prevalence of anosognosia was 54.3% (n = 221), and 43.9% were classified as mild-AD. The average time of care was 5 h/day±2.4 (IADL: 1.3 h/day±1.4 and BADL: 3.6 h/day±1.5). Thirty percent of the patients used home care services, and 25.1% attended a day care center. Patients with anosognosia received more time of care and were more likely to use support services than did their no-anosognosia peers, including institutionalization. The mean cost of support services was 490.4€ /month (SD = 413.1€; range = 25–2,212.38€), while the overall cost of care (support services plus informal care) was 1,787€ /month (SD = 972.4€), ranging from 834.1€ in mild-AD without anosognosia patients, to 2,424.8€ in severe-AD with incident anosognosia patients.

Conclusions: Anosognosia was associated with an increased number of hours of informal care, and a greater use of support services, regardless of the severity of the dementia, which lead to an increase of the total family-care costs.

Keywords

Alzheimer’s disease anosognosia cost of illness dementia health care costs longitudinal studies

INTRODUCTION

The costs of dementia care are frequently divided into formal and informal costs. Informal costs refer to the amount of unpaid informal caregiver’s time spent on patient’s care [1] and represents 40 to 80% of dementia costs, which range from US$315 billion to US$604 billion in western countries [2 –5].

The cost of informal care is mainly determined by the place of residence of the patient. As much as 83% of the people with dementia want to stay in their own home, as published by the annual report ‘Support, Stay, Save’ of the Alzheimer’s Society (UK) [6]. Most patients with dementia are cared for at home, which causes an increase in informal costs, adding an economic burden on families instead of on healthcare systems [1].

Caring for a relative with dementia has a hard impact on the emotional, physical, and economical situation. The economic value of this impact has been estimated using the cost of professional caregivers as a basis (cost of formal care) or by providing a monetary value to the possible loss of opportunities due to the time spent as a caregiver [7, 8].

Previous studies related informal costs to the progressive increase of the patient’s dependency, to the severity of the dementia, and to the presence of behavioral and psychological symptoms of dementia (BPSD) [5, 9]. One of the BPSD that has been reported to increase the perceived caregiver’s burden is anosognosia, the lack of disease awareness [10, 11].

The prevalence of anosognosia in AD patients is over 25%, and it is cognitive decline-related, with around 80% of the patients with severe AD having anosognosia [12]. Patients with anosognosia present more BPSD than patients with no anosognosia, such as delusions [13], disinhibition, and apathy [14]. BPSD cause an increase of the burden, the distress, and the cost of care [15]. Besides, the quality of life perception and the efficiency of neurocognitive rehabilitation are negatively affected by the presence of anosognosia [16–17]. All these factors associated with the presence of anosognosia, even when they may also appear in patients with mild cognitive impairment [18], have an effect on the impact of the informal care required by the patient. Furthermore, patients with anosognosia are more likely to engage in risky behaviors, which increases the burden of the caregivers due to the need of increased supervision and control, which may even lead to early institutionalization [19]. Moreover, the presence of anosognosia has been linked to an increased sense of isolation, greater physical and emotional burden, and a patient-caregiver relationship characterized by greater dependency [20]. Overall, therefore, the presence of anosognosia may be associated with greater care needs, either regarding the number of hours of care needed or the use of health and social support services.

To our knowledge, this is the first study to analyze the impact of anosognosia on informal costs. Our hypothesis was that the presence of anosognosia may cause an increase in the cost of care due to the increased time of care, the increased use of resources, or to both.

METHODS

Design and study population

This was a longitudinal study involving a 24-month follow-up of a consecutive sample of outpatients seen at the Dementia Unit (Department of Neurology) of Bellvitge University Hospital (Hospitalet de Llobregat, Barcelona). They were all diagnosed as either AD according to the criteria of the Diagnostic and Statistical Manual of Mental Disorders [21] or probable AD according to the criteria of the National Institute of Neurological and Communicative Disorders and Stroke / Alzheimer’s disease and Related Disorders Associations (NINCDS-ADRDA) [22]. The main caregiver was defined as the person with ongoing responsibility for helping the patient with activities of daily living (ADL). All the caregivers were relatives of the patient, mainly daughters/sons or spouses. Informed consent was obtained for all participants. Patients were excluded if they presented with vascular or traumatic events, alcohol or substance dependency or abuse, and if they had severe communication problems or had a severity of Global Deterioration Scale (GDS) stage 7 [23] that prevented them from responding adequately to the assessment questions. The study was approved by the hospital’s Clinical Research Ethics Committee (ref. PR162/10).

Data collection

A structured questionnaire designed ad hoc was used to gather information on the use of resources such as day care centers, home care services, residential care, and memory-training programs, as well as on the time spent helping with both instrumental ADL (IADL) and basic ADL (BADL). The questionnaire also allowed collecting sociodemographic data of both patients and caregivers.

The time of care was assessed using two items of the Resources Utilization in Dementia scale (RUD) [24], which were administered to the caregivers: “On a typical care day during the last 30 days, how much time per day did you assist the patient with tasks such as toilet visits, eating, dressing, grooming, walking and bathing?” as BADL, and “On a typical care day during the last 30 days, how much time per day did you assist the patient with tasks such as shopping, food preparation, housekeeping, laundry, transportation, taking medication and managing financial matters?” as a question of IADL.

The cognitive assessment of the patients was based on the Mini-Mental State Exam (MMSE), a brief cognitive assessment tool with a score ranging from 0 to 30 (the lower the score the greater the cognitive deterioration) [25].

The functional assessment of the patient was based on the Disability Assessment for Dementia (DAD) [26]. The DAD provides a measure of basic and instrumental ADL and was administered to the main caregiver. It comprises 40 items and its total score ranges from 40 to 80 (the higher the score the greater the patient’s functional ability).

The severity of dementia was classified according to the criteria of the GDS, a tool designed to determine the stage of a patient’s dementia. GDS 4 corresponds to mild dementia, GDS 5 to moderate dementia, and GDS 6 to moderately severe dementia.

The presence of BPSD was evaluated by means of the Neuropsychiatric Inventory (NPI) [27], which comprises 12 subscales that assess the frequency and severity of 12 neuropsychiatric symptoms (or BPSD), based on information provided by caregivers. The score ranges from 0 to 144, and the higher the score the greater the frequency and severity of neuropsychiatric symptoms.

Finally, anosognosia was assessed using the Anosognosia Questionnaire-Dementia (AQ-D) [28], a tool that is administered both to the patient and the caregiver. It comprises 30 items assessing cognitive/functional deficits and changes in the patient’s behavior, with each item being rated according to the frequency of occurrence, from 0 (never) to 3 (always). The total score ranges from 0 to 90. The degree of anosognosia is estimated on the basis of the difference between the patient and caregiver’s scores. The cut-off for the presence of anosognosia was established at difference≥32 points. We identified asymptomatic cases when anosognosia was not present in any evaluation, incident cases when patients without anosognosia at baseline developed it during the follow up, and persistent cases when anosognosia was present both at baseline and during the follow up.

Procedure

Neurologists from the Dementia Unit selected eligible patients according to the inclusion criteria. The sample was recruited between January and December 2011 and the study finished on March 2014. The aims of the study were explained to all the participants in an introductory interview, and an informed consent was obtained from both patients and caregivers before proceeding. The patients and their caregivers were then interviewed separately by two clinical psychologists trained in the administration of the study protocol instruments.

The economical cost of time of care was evaluated as market price, thus attributing the cost per hour of private professionals [29]. The attribution of costs and the cost of using different health and social resources are shown in Table 1. The cost of day care centers and residential care was derived from the costs established by the Catalan government [30], the cost per hour for home care services was based on the figures set by the Barcelona City Council [31], and the cost of attending memory-training programs and day care centers was taken as the mean cost of 10 hours/month of such services in the area where the patient lived. The hourly cost of informal care was taken to be equivalent to the cost per hour of a geriatric nursing assistant providing help with BADL. The standard for costs per hour was obtained from the Catalan Office of National Statistics [32].

Statistical analysis

Differences between missing cases and those that completed the follow-up were analyzed using either parametric or non-parametric tests according to the criteria of normality, for continuous variables, and with the Pearson chi-square test for categorical variables.

Longitudinal data were analyzed by means of generalized linear models (GLM), because some dependent variables were not normally distributed [33, 34]. This approach enabled us to examine the general effects of the independent variables (time, severity, anosognosia status), and the interaction between them (Time×Severity×Anosognosia), as well as the simple effects of differences between the groups. The dependent variables for each model were the number of care hours (total, instrumental and basic ADL) and the cost of care (hours and resources).

For hypothesis contrasts, the level of statistical significance was set at 0.05. All data processing and analysis was performed using IBM SPSS Statistics for Windows, version 20.0 (Armonk, NY: IBM Corp.).

RESULTS

The baseline sample comprised 221 patients and their respective caregivers, of whom 75.1% completed the follow-up assessment at 12 months and 57.5% the assessment at 24 months. At baseline, only four families of those initially invited declined to participate. Lost cases (n = 94) were more impaired at baseline than were patients who completed the follow-up (n = 127); specifically, they had greater cognitive impairment (MMSE = 17.2 versus 19.1; p = 0.014), poorer functional ability (DAD = 54.7 versus 60.6; p < 0.001), a greater degree of anosognosia (AQ-D = 38.9 versus 30.2; p = 0.001), and more neuropsychiatric symptoms (NPI = 31.2 versus 20.9; p < 0.001). Fig. 1 shows the drop off reasons over the 24-month period.

Sociodemographic and clinical data

The sociodemographic and clinical characteristics of the study participants at each visit are shown in Table 2. The mean age of caregivers at baseline was 63.8 (SD = 13.0), 151 (68.3%) were women, and 56 (25.3%) had fewer than five years of formal education. Spouses accounted for 54.7% of informal caregivers (54.8% women), while 40.7% were sons or daughters of the patient (77.0% women).

Needs and use of services

The caregivers provided, on average, 5 h/day of informal care (SD = 2.4; range = 0–12), distributed across BADL (1.3 h/day; SD = 1.4; range = 0–6) and IADL (3.6 h/day; SD = 1.4; range = 0–6). Time of care was related to the dementia severity (GDS). Thus, the time requested by GDS4 patients was 2.6 h/day (SD = 1.7), while for GDS6 patients it was 7.0 h/day (SD = 1.8) (F = 274.8; df = 2; p < 0.001). The time of care showed a moderate correlation with BPDS (rho = 0.405; p < 0.001) but when including the NPI score as an independent variable in the GLM, the relation with cost over 24 months was not significant (F = 1.449; df = 487; p = 0.229).

The resources used by the patients and their caregivers are described in Table 3. At the 24-month follow-up, 74.5% of cases used, at least once, the available health and social services. The proportion of patients using these resources did not change during the two-year study period: 68.8% at baseline, 74.7% at 12 months, and 66.1% at 24 months (χ² = 4.6; df = 2; p = 0.101). Across the 24 months of follow-up 4.7% of patients were institutionalized.

Impact of anosognosia on the care received by patients

Anosognosia was observed in 54.3% of the patients at baseline. Over the follow-up period, 27.2% of the cases (n = 140) remained asymptomatic, 22.2% (n = 114) presented with anosognosia at either 12 or 24 months (patients without anosognosia at baseline who developed it during the follow up), and anosognosia persisted in 50.6% (n = 260) of the cases (anosognosia present at baseline and during the follow up). A request for help from the relatives and/or the use of services was registered in 82.9% of the cases with anosognosia versus 61.8% of those without anosognosia (χ² = 28.9; df = 2; p < 0.001).

From baseline onwards, patients with anosognosia required more hours of care than did their asymptomatic counterparts (Wald = 37.1; df = 2; p < 0.001). During the follow-up period, asymptomatic cases were also less likely to use health and social services than patients with incident or persistent anosognosia (χ² = 9.3; df = 2; p = 0.009). The mean time dedicated by caregivers to help with the patient’s BADL was 1.1 h/day for asymptomatic cases (SE = 0.1), 1.2 h/day for the incident group (SE = 0.1), and 1.4 h/day (SE = 0.1) for persistent cases; the corresponding figures for IADL were 3.2 h/day (SE = 0.1), 3.7 h/day (SE = 0.1), and 3.9 h/day (SE = 0.1), respectively. The presence of anosognosia increased the use of health and social services, including institutionalization (χ² = 5.5; df = 2; p = 0.018). Overall, resources were used by 50.5% of the asymptomatic cases versus 66.8% of patients with anosognosia (χ² = 13.6; df = 2; p < 0.001). Alongside anosognosia, the severity of dementia was the other main factor associated with the use of resources: one or more resources were used by 53.7% of patients at GDS stage 4, by 56.8% of those at GDS 5, and by 69.2% of those at GDS 6 (χ² = 9.6; df = 2; p = 0.008) (Table 3).

The presence of anosognosia was associated with an increase in the time dedicated to the informal care of the patients, regardless of the dementia severity (Wald = 9.0; df = 2; p = 0.011). Figure 2 shows the number of hours dedicated per day to provide help with BADL and IADL, according to the severity of dementia and stratified by the patient’s anosognosia status.

Attribution of costs

Based on the attribution of cost per hour of care, the cost of informal care was 851.9€ /month (SD = 546.2; range = 0–2,091.9€) for BADL and 544.7€ /month (SD = 349.2; range = 0–1337.6€) for IADL. The cost of all support services was 490.4€ /month (SD = 413.1; range = 25–2,212.38€); the cost of home care services was 259.3€ /month (SD = 115.4; range = 77.5–378.7€), while it was 552.1€ /month (SD = 119.0; range = 336.7–617.3€) for day center attendance. The total cost across the 24-month follow-up period was 1,787€ /month (SD = 972.4), with the cost of informal care (caregiver hours) accounting for 83.4% of the total. The cost of support services was significantly higher at 24 months (F = 3.6; df = 2; p = 0.026).

In the generalized linear model the total cost of care (support services plus caregiver hours) did not differ significantly between baseline, 12 months, and 24 months (Wald = 0.374; df = 2; p = 0.829), and neither was there an interaction effect (Time×Severity of Dementia×Anosognosia) on this total cost (Wald = 179.7; df = 15; p = 0.279). Therefore, the analysis of total cost was stratified only according to anosognosia status and to the severity of dementia (Wald = 11.1; df = 4; p = 0.026). However, a summary table showing the variable Time has been included as Supplementary Material (Supplementary Table 1). Table 4 shows that the lowest cost corresponded to asymptomatic cases (no anosognosia) at GDS stage 4 (834.0€ /month), whereas the highest cost corresponded to cases with incident anosognosia and at GDS 6 (2,424.8€ /month).

DISCUSSION

The main purpose of this work was to describe the effect of anosognosia in the cost of care, using the daily hours of care and the use of resources as cost-indicators.

The informal care provided by relatives is fundamental to AD patients’ attention. Principal characteristics of AD, such as functional dependence and neuropsychiatric symptoms are the main factors related with an increase of the time of care. However, both the perceptions of caregiving stress and the positive aspects of caregiving are appraised through a cultural/ethnic lens [35], and whereas Caucasians generally place earlier the loved ones in care facilities [36], African Americans and Latinos tend to delay institutionalization [37]. Informal care is usually provided by close relatives, especially if one of these is a woman. In agreement with previous research, our results show that external support services still account for a relatively small proportion of the overall care that is provided (around 15% of the totalcost).

However, although traditional roles and relationships persist within the provision of informal care in Spain, research suggests that caregivers are beginning to ask for different kinds of help from government agencies [1]. Whereas twenty years ago caregivers were most likely to request financial assistance in the form of a monthly caregiver allowance, the main demand nowadays is for home care services and greater training. These home care services would include the use of day care centers and the access to other kind of formal support, such as tele-care [38].

Several studies have reported specific data about the cost of formal and informal care to patients with dementia [39 –41]. The factors that influence the cost of care can be classified in two groups: dementia-directly related factors and factors related to caregiver’s burden. The first group encloses functional disability, anosognosia, and neuropsychiatric symptoms, among others [42]. In our analyses neuropsychiatric symptoms were not significant, which may be due to the fact that dementia severity is influenced-by the presence of neuropsychiatric symptoms. In another study, the NPI scores were barely related with an increment of the caregiving costs, and it was the dependence scale that largely explained the variance of the caregiving costs [43]. The second group is related with the caregiver burden perception. We previously reported an increase of the burden perception associated with anosognosia [20], and there is evidence that greater burden is related to a greater use of resources [44]. We did not include the burden in our study due to its strong relationship with anosognosia.

In most cost analyses, the severity of dementia emerges as the main factor associated with increased costs of informal care for people with AD [45]. As expected, in our study, greater severity increased both the number of hours of informal care required and the use of health and social support services. However, the inclusion of the presence of anosognosia as a variable in our analysis revealed important differences both in care hours and the use of resources. The total cost of care increased in an almost linear manner from mild cases of dementia without anosognosia, to cases with incident or persistent anosognosia and at GDS stage 6.

In cases without anosognosia and at GDS stage 4, the monthly cost of care was over 830€, which is 1.29 times the minimum wage in Spain (648.60€ /month) [46]; it should be noted, however, that part of this cost is borne by the government through dependency allowances [47]: in the present study, this was the case for 21.7% of patients with mild dementia and 84.8% of the most severe (GDS 6) cases. It should also be noted that while the figures obtained here are considerably high, the Catalan National Health System and Social Services subsidize part of the cost, which increases equitability. As for comparisons with previous research, the mean total cost of 1,787€ /month is in line with the figures reported by other studies in Spain [40, 48], similar to the figures in Ireland [49], and slightly less than the cost documented in Germany, the UK, and France [50]. The cost of care increases with the severity of dementia, and most studies coincide in terms of the support services requested by caregivers and the factors that lead to greater care needs (functional disability and BPSD) [51]. The present study adds to this picture by showing that the presence of anosognosia is another factor that increases the cost of care over 300€ /month on average.

Interestingly, we did not find an inverse relationship between the number of hours of informal care provided and the use of support services, which suggests that the availability of such services improves the quality of care provided, and the quality of life of patients and caregivers, rather than reducing the number of hours of informal care per se.

An increase in the amount of time spent by informal caregivers directly correlates with an increase in their perceived burden [52 –54]. In a previous study we observed that the cost of informal care increased in line with the patient’s physical disability and cognitive impairment, as well as if the relative was the sole caregiver, with the cost of informal care, explaining 6.7% of the total variance in the perceived burden of caregivers [40]. We also reported that the presence of anosognosia was a determining factor in terms of greater caregivers’ perceived burden [20, 55]. The results of the present study highlight the need for more specific help to be offered to caregivers in relation to the impact that anosognosia in the patient can have, and the implications it has for home-based care [15, 53]. Future research may include a perceived economic burden measure, as well as some data regarding the “opportunity costs” related with a possible loss of opportunities due to the time spent as a caregiver. In the context of resource management, maintaining or improving the quality of life of patients and caregivers is one of the main ways in which the costs of health and social care can be reduced [56].

Previously, many studies examined the indirect cost based on caregivers’ self-reported number of hours with no external validation. Also, our study did not include the “opportunity costs” to caregivers and only included the “market price” for each hour reported. These limitations have influenced both the number of hours reported and the associated attributed cost. However, both figures are similar to those documented by other studies in Spain and internationally [24 , 48–49]. Even though the resources and their access are not equal everywhere, we decided to describe their use in a specific work-class neighborhood of Barcelona where the possibilities and the accessibility were as similar as possible.

CONCLUSIONS

Anosognosia is a frequent symptom in AD patients and it has a major impact to caregivers, increasing their time of care and the use of support services. The presence of anosognosia implies, therefore, an increase of informal costs.

Footnotes

ACKNOWLEDGMENTS

This study was conducted within the framework of the project “Assessing perceptions of patient quality of life in patients with Alzheimer’s disease and their family caregivers over a two-year period”, funded by Spain’s Ministry of Economy and Competitiveness (reference PSI2010-19014), PI: Conde-Sala JL. The authors also would like to thank Eva Vidal, social worker based at the “La República” Social and Health Care-Centre of the Institut d’Assistència Sanitária, for her advice regarding the attribution of costs and for conducting a review on the cost of different resources in Catalonia.

Authors’ disclosures available online ().

Appendix

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