Dementias are characterized by progressing deterioration of cortical and subcortical functions, leading to cognitive decline and severe disabilities. The most common form of dementia is Alzheimer's disease (AD), which represents approximately 70% of all dementia diagnoses (Berr, Wancanta, & Ritchie, 2005). As patients lose their abilities to master daily life, family members are an important cornerstone in patient assistance—at great physical, emotional, and financial costs, and in prolonging the time prior to necessary institutionalization (Colerick & George, 1986; Stone, Cafferata, & Sangl, 1987). However, providing informal care to patients with dementia is challenging and the adverse impact of caring on family caregivers is well documented. Compared with non-caregivers, caregivers of patients with AD have poorer mental and physical health and increased mortality risk (Dunkin & Anderson-Hanley, 1998; Hiel et al., 2015; Mausbach, Patterson, Rabinowitz, Grant, & Schulz, 2007; Schulz & Beach, 1999). This finding has been confirmed by a recent longitudinal study (Hajek & König, 2016), and a systematic review has underscored the strong association between caregiver burden and depression (van der Lee, Bakker, Duivenvoorden, & Dröes, 2014). This negative impact might be even stronger considering caregivers of patients with dementia are often older and experiencing their own age-related medical conditions.
Concurrently, as the provision of care becomes increasingly time-consuming, opportunities for socializing decrease (Papastavrou, Andreou, Middleton, Tsangari, & Papacostas, 2015). However, a lack of social relationships has been reported to have an impact on mental health, as well as mortality, comparable to well-established risk factors (Holt-Lunstad, Smith, & Layton, 2010; Piercy et al., 2013). Given this increased morbidity of caregivers and the direct link between care continuation and caregivers' own health and well-being (Thomas et al., 2004), it is essential to support family caregivers in their work and identify health-related problems and other incapacities that might impede care provision.
However, as a consequence of the care situation, caregivers often do not have time to seek medical advice for their own conditions. Care recipients' physicians have an important function in recognizing the negative impacts of caregiving on those providing care (Adelman, Tmanova, Delgado, Dion, & Lachs, 2014; Cohen, 2000; O'Connor, 2011). Although physicians' responsibilities are naturally limited to patients' health issues, they might still have a good—and in some cases perhaps the only—opportunity to recognize and address mental health issues in caregivers. Yet, to what extent caregivers' needs and problems are recognized by physicians is unexplored. Previous work suggests variance between caregivers' and physicians' perceptions regarding efficacy in providing disease support and information (American Alzheimer's Association, 2001; Yaffe, Orzeck, & Barylak, 2008). For example, although practitioners describe themselves as supporting the families of patients with dementia (Bruce, Paley, Underwood, Roberts, & Steed, 2002), evidence exists that family caregivers complain about a lack of emotional support and inadequate education on managing patients' AD medication (Fortinsky, 2001). Conversely, physicians have also reported that family caregivers are frequently unreceptive to suggestions on seeking help or assistance (Boots, Wolfs, Verhey, Kempen, & de Vugt, 2015).
Although these studies are valuable for identifying potential communication problems between caregivers and physicians, they are mostly based on small samples and often restricted to qualitative approaches, comparing caregivers' and physicians' expressed attitudes and expectations on support provision in the caregiving situation (Bruce et al., 2002; Schoenmakers, Buntinx, & Delepeleire, 2009; Yaffe et al., 2008). Associations between physician assessments and caregivers' self-rated difficulties arising from the care situation have not been adequately explored. Keeping in mind that caregivers potentially hesitate to seek timely, adequate help (Bruce et al., 2002), statistically based evidence from studies on the scope of the problem are essential for raising awareness about caregivers who might substantially benefit from proactively offered help.
The purpose of the current study was to investigate to what extent medical practitioners recognized family caregivers' problems.
The design of the IDEA (Improving Alzheimer Dementia Treatment: Epidemiological Assessment of Doctors', Patients' and Caregivers' Unmet Needs) study has been described elsewhere in greater detail (Riedel et al., 2012). The study was conducted in two stages. In stage one, patients with AD in either mild or moderate stages and their accompanying caregivers met at neurologists' offices. To optimally reflect the daily home care situation, exclusion criteria for patients were as minimal as possible: higher than moderate stages of AD, consultation due to an acute emergency (e.g., pain), or lack of consent (either by the patient or legal representative/caregiver). Caregivers of any age were eligible if they provided regular informal care to patients. After inclusion, physicians clinically described each patient on a patient documentation sheet. Caregivers were given a caregiver questionnaire and asked to complete it while waiting. The questionnaire comprised basic information about the caregiver and patient, and questions about the current home care situation. Once completed, the patient documentation sheet and caregiver questionnaire were mailed to the study center. In stage two, caregivers were contacted and interviewed by independent blinded members of the study team (clinical psychologists). This comprehensive interview included discussing caregivers' health status and detailed aspects of the caregiving situation.
In stage one, 403 patient–caregiver dyads were documented. In stage two, 237 caregivers participated in interviews; some declined to participate due to lack of time (23%), worries about privacy (9.8%), or other reasons (26.3%; e.g., emotional strain, logistical problems), and 40.9% did not state a reason. Caregivers who only participated in stage one did not differ from those who completed stage two in sex distribution (p = 0.06), age (p = 0.69), or duration of caregiving (p = 0.1). In addition, the associated patients did not differ regarding sex distribution (p = 0.98), age (p = 0.12), or duration (p = 0.1) and severity (p = 0.77)of AD.
Patient- and caregiver-related data were collected at both stages. In stage one, data were obtained from the treating physician (patient documentation sheet) and caregiver (questionnaire). In stage two, the data source was the caregiver only.
Physicians provided patient-related data by completing a patient documentation sheet, which comprised basic sociodemographic information (e.g., sex, age, educational level, acknowledged care level). Physicians coded in detail patients' current score on the Mini-Mental State Examination (MMSE; Folstein, Folstein, & McHugh, 1975) and their current AD severity (mean MMSE score = 17.8 [SD = 5.6]). Caregivers documented patients' functional status in instrumental activities of daily living according to the Barthel Index (BI; Mahoney & Barthel, 1965) scale in the caregiver questionnaire (Lawton & Brody, 1969). The 10-item BI scale assesses patients' capabilities to eat, move, and groom oneself without assistance. Total possible scores range from 0 to 100, with lower scores indicating increased disability (i.e., higher dependence on assistance by caregivers). In the interview, caregivers provided more detailed information about the caring situation (e.g., service use, dementia's interference with daily care routine, further patient morbidities).
In addition to patient characterization, physicians were also asked to rate caregivers' burden, physical and psychiatric morbidities, and need for assistance on eight items. Regarding burden, physicians assessed (a) emotional strain, (b) physical strain, and (c) time burden of the caregiving situation. Each item was rated on a four-point scale from very to not at all. Items four and five assessed caregivers' physical and mental comorbidity on a four-point scale ranging from normal to severe. Three items recorded caregivers' need for support from physicians' perspectives: To what extent does the caregiver seek help?, To what extent does the caregiver need advice?, and Does the caregiver need medical/psychological treatment? Each item was rated from very to not at all.
Caregivers' personal information, including age, marital status, and relationship with patients, was documented on the caregiver questionnaire. In addition, caregivers assessed their physical health and emotional state on a scale analogue to the EuroQoL-5D Visual Analogue Scale (VAS), ranging from 0 to 100, with 100 indicating best state (Greiner, Weijnen, Nieuvenhuizen, Oppe, & de Charro, 2003).
In stage two, caregiver interviews focused on the current home care situation and addressed caregivers' own mental and physical health. The Depression Screening Questionnaire (DSQ; Wittchen, Höfler, & Meister, 2001) was used to screen for depression. In the current study, a DSQ score ≥10 indicated the presence of a major depressive episode. Caregivers with DSQ scores ≥8 and <10 were classified as having a subthreshold depressive disorder.
Continuous variables were reported as means and standard deviations and categorical variables as absolute and relative frequencies. Differences in means were tested by univariate analysis of variance or the Mann–Whitney U test, as appropriate. Agreement between physicians and caregivers regarding caregivers' psychiatric and somatic comorbidities, time burden, and need for advice were estimated by weighted kappa statistics for categorical ratings and intraclass correlation coefficients (ICCs) for continuously distributed ratings. ICCs were estimated after fitting a random-intercept model with the inclusion of the rater identifier (physician or caregiver) as a level two variable. Statistical inference was based on a significance level of 5%. All statistical analyses were conducted with SAS 9.3.
The study was conducted in compliance with the Declaration of Helsinki and received ethical approval from the ethics committee of the medical faculty from the Technische Universität Dresden. Written informed consent was obtained from all participants.
Characteristics of Caregiver–Patient Dyads
Enrolled caregivers' and patients' characteristics are shown in Table 1. In more than two thirds of dyads, females provided care; approximately one half of caregivers were spouses of the associated patients and 36.3% were sons/daughters. Mean duration of care was 40.1 months. The majority of caregivers lived with the patient and were significantly older than those caregivers who did not (67.9 versus 52.3 years, p < 0.001). Regarding somatic comorbidity, the majority of caregivers (73.7%) had at least one medical condition. The most common comorbidities reported by caregivers were cardiovascular diseases (18.1%), hypertension (16.8%), arthrosis (10.8%), gastrointestinal diseases (8.2%), herniated discs (7.8%), and other unspecific back pain (7.8%).
Characteristics of Caregivers and Patients
The associated patients were predominantly female (61%), with a mean age of 77.6 years and mean AD duration of 3.1 years. Two thirds of patients had moderate AD and one third had mild AD. The mean BI score was 73.1 (SD = 25.5).
Caregivers' Physical and Psychological State
Comorbidity Assessed by Physicians. Caregivers' comorbidities and need for assistance, as assessed by physicians, are shown in Table 2. Most caregivers were rated to be at least moderately emotionally (86.6%) and physically (61.6%) strained by the care situation. In contrast, a minority of caregivers were rated to be at least moderately physically (14.1%) or mentally (28.1%) comorbid.
Physicians' Assessments of Caregivers' Burden, Morbidity, and Need for Assistance
Comorbidity as Assessed by Caregivers. Caregivers rated a mean value of 64.3 (SD = 20.6) for physical health and 59.3 (SD = 22.9) for emotional state on the VAS. The mean DSQ score was 4.5 (SD = 3.7). In total, 43.7% of caregivers had clinically relevant depressive symptoms (subthreshold depression: 27.3%; major depression: 16.4%). Although caregiving spouses and children had similar rates of major depression (16% versus 19.8%), children significantly more often experienced subthreshold depression (33.7% versus 23.1%), resulting in significantly higher total rates of depressive symptoms in caregiving children than spouses (53.5% versus 38.9%, p < 0.05). Spouses with depressive symptoms were significantly younger than those without symptoms (68.5 versus 72.9 years, p < 0.01), whereas children caregivers with and without depression did not differ in this regard (51.4 versus 52.1 years, p = 0.690). No differences between depressed and non-depressed caregivers were found for the duration of caregiving (p = 0.292), somatic comorbidities (p = 0.137), patient age (p = 0.356), AD duration (p = 0.745), and patients' BI (p = 0.318) or MMSE (p = 0.516) scores.
Need for Information
Regarding the degree of information on the nature of AD, 66.1% of caregivers stated they were well or very well informed, 24.8% felt moderately informed, and 9.1% stated they were worse or not at all informed. Regarding administration of AD medication, 74.9% of all caregivers stated that they were well informed, 18.1% were a little informed, and 7% were not at all informed.
Agreement Between Physicians and Caregivers
Among caregivers with subthreshold and major depression, the proportion who were assessed by physicians to be mentally comorbid were investigated (Figure).
Physicians' ratings of depression severity in caregivers with a subthreshold depressive disorder (Depression Screening Questionnaire [DSQ] score of 8 or 9) or major depression (DSQ score ≥10).
Note. CGs = caregivers.
In both groups considered, 20% to 25.6% were evaluated to be not depressive, and 40% of caregivers with major depression were evaluated to be mildly depressed only. Similarly, 33.3% to 39.2% of caregivers were assessed to be in no need of any medical/psychological treatment. Among caregivers who felt less or not at all informed about the nature or course of AD, 35% and 33% were assessed by physicians to have no or only mild need for information, respectively (data not shown).
Agreement between physicians and caregivers regarding caregivers' psychiatric and somatic comorbidities, time burden, and need for advice were also evaluated using kappa statistics and ICCs. Low rates of agreement were found for psychiatric comorbidity (kappa = 0.36), appraisal of time burden (ICC = 0.25), and need for advice (kappa = 0.1), and a higher rate was found for the appraisal of somatic comorbidity (ICC = 0.81).
Agreement between family caregivers and physicians regarding appraisal of caregivers' burden in the care situation was investigated. A high degree of physical and mental comorbidity was found among caregivers. Only one in four caregivers did not experience a somatic condition. Approximately one half of caregivers experienced two or more somatic conditions. Moreover, a high rate of depressive symptoms was found among >40% of caregivers. More than one in three caregivers met criteria for major depression according to the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 2000), with higher rates for depression among caregiving children than spouses. This finding dovetails with previous results from Conde-Sala, Garre-Olmo, Turró-Garriga, Vilalta-Franch, and López-Pousa (2010), who reported higher burden and feelings of guilt in children than in spouses. Alternatively, a higher burden was also found in caregiving spouses than caregiving adult children (Pinquart & Sörensen 2003), suggesting further factors (e.g., the housing situation) may mediate this association.
In addition to the increased morbidity of caregivers, the data also suggest a substantial mismatch between caregivers' conditions and physicians' appraisals. From physicians' perspectives, <30% of caregivers were at least moderately mentally comorbid and <15% were at least moderately physically comorbid. This finding corresponds with a potential underestimation of depression severity in caregivers by physicians. Among caregivers with clinically relevant depressive symptoms, approximately 30% were assessed as not mentally comorbid and one third were evaluated as only mildly affected. These rates were comparable for caregivers with major depression (20% mentally comorbid and 40% only mildly affected). Thus, between one quarter and one third of caregivers with serious mental disorders were missed by physicians and consequently were probably not recommended professional help for their condition or otherwise offered help.
The current findings also show a potential lack of information for caregivers regarding AD. Approximately one third of caregivers who believed they were not well informed about AD and its potential course were erroneously assessed by physicians as very well informed. However, recently published data obtained from surveys, qualitative studies, and systematic reviews have emphasized that knowledge on the nature and course of dementia is important to caregivers (Boots et al., 2015; Jensen & Inker, 2015; Khanassov & Vedel, 2016; Vaingankar et al., 2013). The adverse impact of caregiving on caregivers' mental health is also substantially moderated by their self-efficacy, which in turn largely depends on their knowledge of the disease (Hajek & König, 2016). Thus, the current results stress the necessity of educating and counseling caregivers as timely as possible.
At first glance, the current findings were not completely unexpected, as increased burden had previously been reported in older caregivers and those with mental and physical comorbidities (Dunkin & Anderson-Hanley, 1998; Zanetti et al., 1998). In addition, previous work suggested variance between caregivers' and physicians' perceptions of efficacy in providing support and informing caregivers about AD (American Alzheimer's Association, 2001; Schoenmakers et al., 2009; Yaffe & Klvana, 2002). Although these findings were mainly based on qualitative approaches and small samples, the current study is the first to quantify the diverging perceptions of physicians and caregivers using a large sample of randomly chosen caregivers. Moreover, to the best of the authors' knowledge, the current study is the first to investigate the recognition of comorbidities in caregivers of patients with AD by patients' physicians.
When reviewing the current results, it is also important to keep two aspects in mind. First, enrollment of patient–caregiver dyads was restricted to patients with mild or moderate AD. Comorbidity and burden of care were already substantial in early stages of the disease when patients were still comparably functional in terms of the BI scale. Second, it should be noted that, due to the high proportion of caregiving adult children, one third of caregivers were still employed and therefore had to rearrange care activities with their jobs. The additional adverse impact of such a dual burden has been previously described and increases the probability of disregarding personal care (Fonareva & Oken, 2014; Thomas et al., 2004). Thus, the results underline the necessity of early prevention measures from a societal perspective, as they might help prolong the time until residential care becomes necessary, as well as maintain caregivers' ability to work (Handels, Wolfs, Aalten, Verhey, & Severens, 2013). Early detection of an unmanageable burden of care or full-blown depression is essential, and several conceivable measures exist to do so. For example, caregivers and physicians should be made increasingly aware that caregivers are prone to mental disorders and should actively seek or be offered medical advice as early as possible. Caregivers could be counseled by patients' physicians in this regard from the beginning of their “caring career” (i.e., immediately after diagnosis of dementia) and could be regularly offered a brief depression screening when accompanying their relatives to physician visits. In addition, other professionals in contact with patients and their family caregivers (e.g., mobile nursing services) could be educated about how to recognize early symptoms of depression and how to assist caregivers in obtaining adequate help.
Some important limitations should be considered when interpreting the results. First, the results are restricted to caregivers of patients with mild or moderate AD. Patients with severe stages of AD were not included and the situation of caregivers providing care to such patients remains unknown. Second, there was a relatively high withdrawal rate from stage one to stage two, mostly due to strain and unknown reasons. Although analyses did not detect differences between caregivers and patients from both stages in core measures, depression screening was not available at stage one. Thus, it cannot be excluded that the presence of depressive symptoms decreased the willingness to participate in the interview, leading to a potential underestimation. Third, due to its focus and methodological setting, the theoretical perspective of the study relied heavily on the influence of medical factors on caregiver burden. However, substantial evidence exists that non-medical factors, such as social relationships, might contribute to the mortality risk of individuals to a degree comparable to well-established risk factors (Holt-Lunstad et al., 2010). These aspects of social cognition can also be related to underlying neural and anatomical structures of the brain (Adolphs, 2009). Thus, the lack of a measure of social cognition or social support potentially limits the validity of the results.
Finally, physicians included were those of the patients and not of the caregivers. Unlike discussed previously (Adelman et al., 2014), physicians' professional responsibilities do not necessarily extend to caregivers' health; it is probable that with thorough examination by physicians, a smaller proportion of morbid caregivers would have been missed. However, despite these methodological and conceptual drawbacks, the results should be understood as emphasizing the valuable resource of the physician–caregiver interaction to mitigate caregiver burden.
Patients' physicians may be a valuable resource in timely identification of family caregivers' problems, providing the basis for adequate support.
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Characteristics of Caregivers and Patientsa
| Age (years)||62.1 (13.6)|
| Duration of caregiving (months)||40.1 (33.2)|
| Male:female ratio||124 (31):279 (69)|
| Relationship to patient|
| Spouse||195 (48.5)|
| Son/daughter||146 (36.3)|
| Son-in-law/daughter-in-law||22 (5.5)|
| Other||39 (9.4)|
| Living with patient||250 (63.6)|
| Occupational status|
| Retired||192 (48.7)|
| Employed||124 (31.5)|
| Unemployed||56 (14.2)|
| Retired early||16 (4.1)|
| Unable to work||6 (1.5)|
| No. of comorbid diseases|
| None||61 (26.3)|
| One||67 (28.9)|
| Two||50 (21.5)|
| More than two||59 (23.3)|
| Age (years)||77.6 (7.6)|
| Duration of Alzheimer's disease (years)||3.1 (2.7)|
| Mini-Mental State Examination score||17.8 (5.6)|
| Barthel Index score||73.1 (25.5)|
| Instrumental Activities of Daily Living score||2.3 (2.3)|
| Need of daily care by caregiver (minutes) (Q1, Q2)||240 (110, 600)|
| Male:female ratio||156 (39):247 (61)|
| Severity of Alzheimer's disease|
| Moderate||265 (65.6)|
| Mild||138 (34.4)|
Physicians' Assessments of Caregivers' Burden, Morbidity, and Need for Assistance
|Physicians' Assessment of…||Severity, n (%)|
|Very Severe||Moderate||Mild||Not at All|
| How emotionally straining is the care situation?||142 (37.9)||182 (48.7)||28 (7.5)||22 (5.9)|
| How physically straining is the care situation?||66 (17.8)||162 (43.8)||64 (17.3)||78 (21.1)|
| How time-consuming is the care situation?||140 (37.9)||165 (44.7)||39 (10.6)||25 (6.8)|
| Physical morbidity||11 (3)||41 (11.1)||112 (30.4)||204 (55.5)|
| Mental morbidity||19 (5.2)||84 (22.9)||139 (38)||124 (33.9)|
|Need for support|
| Extent of seeking help||41 (11.2)||121 (33.1)||85 (23.2)||119 (32.5)|
| Extent of needing advice||93 (25.2)||144 (39)||63 (17.1)||69 (18.7)|
| Extent of needing medical/psychological treatment||40 (11.4)||79 (22.4)||75 (21.3)||158 (44.9)|