Research in Gerontological Nursing

Research Brief 

Overlooking Informal Dementia Caregivers' Burden

Oliver Riedel, PhD; Jens Klotsche, PhD; Hans-Ulrich Wittchen, PhD

Abstract

Patients with Alzheimer's disease (AD) need early caregiver support. Caregivers often have poor health, but usually do not have time to seek medical advice for their own conditions. Patients' physicians, who are frequently the sole medical practitioner caregivers contact regularly, have an important function in recognizing family caregivers' burdens. The current study investigated to what extent medical practitioners recognized family caregivers' problems. In a two-staged survey in neurology outpatient care, caregivers of patients with mild or moderate AD were enrolled and assessed by physicians regarding their physical and mental burden, as well as need for help and advice about AD. Subsequently, caregivers' mental health was evaluated in a comprehensive diagnostic interview by blinded psychologists. Overall, 73.7% of caregivers had at least one somatic condition and 43.7% had clinically relevant depressive symptoms (of these, 37.5% met criteria for major depression). The findings suggest that the burden of a substantial proportion of affected family caregivers is overlooked.

[Res Gerontol Nurs. 2016; 9(4):167–174.]

Abstract

Patients with Alzheimer's disease (AD) need early caregiver support. Caregivers often have poor health, but usually do not have time to seek medical advice for their own conditions. Patients' physicians, who are frequently the sole medical practitioner caregivers contact regularly, have an important function in recognizing family caregivers' burdens. The current study investigated to what extent medical practitioners recognized family caregivers' problems. In a two-staged survey in neurology outpatient care, caregivers of patients with mild or moderate AD were enrolled and assessed by physicians regarding their physical and mental burden, as well as need for help and advice about AD. Subsequently, caregivers' mental health was evaluated in a comprehensive diagnostic interview by blinded psychologists. Overall, 73.7% of caregivers had at least one somatic condition and 43.7% had clinically relevant depressive symptoms (of these, 37.5% met criteria for major depression). The findings suggest that the burden of a substantial proportion of affected family caregivers is overlooked.

[Res Gerontol Nurs. 2016; 9(4):167–174.]

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.

Method

Study Design

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.

Study Material

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.

Patient-Related Data

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).

Caregiver-Related Data

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.

Statistical Analysis

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.

Ethical Approval

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.

Results

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 Patientsa

Table 1:

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

Table 2:

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.

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).

Discussion

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.

Limitations

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.

Conclusion

Patients' physicians may be a valuable resource in timely identification of family caregivers' problems, providing the basis for adequate support.

References

  • Adelman, R.D., Tmanova, L.L., Delgado, D., Dion, S. & Lachs, M.S. (2014). Caregiver burden: A clinical review. Journal of the American Medical Association, 311, 1052–1059. doi:10.1001/jama.2014.304 [CrossRef]
  • Adolphs, R. (2009). The social brain: Neural basis of social knowledge. Annual Review of Psychology, 60, 693–716 doi:10.1146/annurev.psych.60.110707.163514 [CrossRef]
  • American Alzheimer's Association. (2001). Alzheimer's disease study—Communication gaps between primary care physicians and caregivers. Washington, DC: Author.
  • American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author.
  • Berr, C., Wancata, J. & Ritchie, K. (2005). Prevalence of dementia in the elderly in Europe. European Neuropsychopharmacology, 15, 463–471. doi:10.1016/j.euroneuro.2005.04.003 [CrossRef]
  • Boots, L.M., Wolfs, C.A., Verhey, F.R., Kempen, G.I. & de Vugt, M.E. (2015). Qualitative study on needs and wishes of early-stage dementia caregivers: The paradox between needing and accepting help. International Psychogeriatrics, 27, 927–936 doi:10.1017/S1041610214002804 [CrossRef]
  • Bruce, D.G., Paley, G.A., Underwood, P.J., Roberts, D. & Steed, D. (2002). Communication problems between dementia carers and general practitioners: Effect on access to community support services. Medical Journal of Australia, 177, 186–188.
  • Cohen, C.A. (2000). Caregivers for people with dementia—What is the family physician's role?Canadian Family Physician, 46, 376–380.
  • Colerick, E.J. & George, L.K. (1986). Predictors of institutionalization among caregivers of patients with Alzheimer's disease. Journal of the American Geriatrics Society, 37, 493–498. doi:10.1111/j.1532-5415.1986.tb04239.x [CrossRef]
  • Conde-Sala, J.L., Garre-Olmo, J., Turró-Garriga, O., Vilalta-Franch, J. & López-Pousa, S. (2010). Differential features of burden between spouse and adult-child caregivers of patients with Alzheimer's disease: An exploratory comparative design. International Journal of Nursing Studies, 47, 1262–1273 doi:10.1016/j.ijnurstu.2010.03.001 [CrossRef]
  • Dunkin, J.J. & Anderson-Hanley, C. (1998). Dementia caregiver burden—A review of the literature and guidelines for assessment and intervention. Neurology, 51(Suppl. 1), S53–S60. doi:10.1212/WNL.51.1_Suppl_1.S53 [CrossRef]
  • Folstein, M.F., Folstein, S.E. & McHugh, P.R. (1975). “Mini-mental state.” A practical method for grading the mental state of patients by the clinician. Journal of Psychiatric Research, 12, 189–198. doi:10.1016/0022-3956(75)90026-6 [CrossRef]
  • Fonareva, I. & Oken, B.S. (2014). Physiological and functional consequences of caregiving for relatives with dementia. International Psychogeriatrics, 26, 725–747 doi:10.1017/S1041610214000039 [CrossRef]
  • Fortinsky, R.H. (2001). Health care triads and dementia care: Integrative framework and future directions. Aging & Mental Health, 5(Suppl. 1), S35–S48. doi:10.1080/713649999 [CrossRef]
  • Greiner, W., Weijnen, T., Nieuvenhuizen, M., Oppe, S. & de Charro, F. (2003). A European EQ-5D VAS valuation set. In Brooks, R., Rabin, R. & de Charro, F. (Eds.), The measurement and valuation of health status using EQ-5D—A European perspective. Dordrecht, The Netherlands: Wolters Kluwer. doi:10.1007/978-94-017-0233-1_8 [CrossRef]
  • Hajek, A. & König, H.H. (2016). Informal caregiving and subjective well-being: Evidence of a population-based longitudinal study of older adults in Germany. Journal of the American Medical Directors Association, 17, 300–305 doi:10.1016/j.jamda.2015.10.015 [CrossRef]
  • Handels, R.L., Wolfs, C.A., Aalten, P., Verhey, F.R. & Severens, J.L. (2013). Determinants of care costs of patients with dementia or cognitive impairment. Alzheimer Disease and Associated Disorders, 27, 30–36 doi:10.1097/WAD.0b013e318242da1d [CrossRef]
  • Hiel, L., Beenackers, M.A., Renders, C.M., Robroek, S.J.W., Burdorf, A. & Croezen, S. (2015). Providing personal informal care to older European adults: Should we care about the caregivers' health?Preventive Medicine, 70, 64–68 doi:10.1016/j.ypmed.2014.10.028 [CrossRef]
  • Holt-Lunstad, J., Smith, T.B. & Layton, J.B. (2010). Social relationships and mortality risk: A meta-analytic review. PLoS One, 7, e1000316 doi:10.1371/journal.pmed.1000316 [CrossRef]
  • Jensen, C.J. & Inker, J. (2015). Strengthening the dementia care triad: Identifying knowledge gaps and linking to resources. American Journal of Alzheimer's Disease and Other Dementias, 30, 268–275 doi:10.1177/1533317514545476 [CrossRef]
  • Khanassov, V. & Vedel, I. (2016). Family physician–case manager collaboration and needs of patients with dementia and their caregivers: A systematic mixed studies review. Annals of Family Medicine, 14, 166–177 doi:10.1370/afm.1898 [CrossRef]
  • Lawton, M.P. & Brody, E.M. (1969). Assessment of older people: Self-maintaining and instrumental activities of daily living. The Gerontologist, 9, 179–186 doi:10.1093/geront/9.3_Part_1.179 [CrossRef]
  • Mahoney, F. & Barthel, D. (1965). Functional evaluation: The Barthel Index. Maryland State Medical Journal, 14, 61–65.
  • Mausbach, B.T., Patterson, T.L., Rabinowitz, Y.G., Grant, I. & Schulz, R. (2007). Depression and distress predict time to cardiovascular disease in dementia caregivers. Health Psychology, 26, 539–544. doi:10.1037/0278-6133.26.5.539 [CrossRef]
  • O'Connor, C. (2011). Caring for dementia carers: The role of general practitioners in Ireland. Irish Journal of Medical Science, 180, 327–332 doi:10.1007/s11845-010-0671-3 [CrossRef]
  • Papastavrou, E., Andreou, P., Middleton, N., Tsangari, H. & Papacostas, S. (2015). Dementia caregiver burden association with community participation aspect of social capital. Journal of Advanced Nursing, 71, 2898–2910 doi:10.1111/jan.12762 [CrossRef]
  • Piercy, K.W., Fauth, E.B., Norton, M.C., Pfister, R., Corcoran, C.D., Rabins, P.V. & Tschanz, J.T. (2013). Predictors of dementia caregiver depressive symptoms in a population: The Cache County Dementia Progression Study. Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 68, 921–926 doi:10.1093/geronb/gbs116 [CrossRef]
  • Pinquart, M. & Sörensen, S. (2003). Associations of stressors and uplifts of caregiving with caregiver burden and depressive mood: A meta-analysis. Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 58, P112–P128. doi:10.1093/geronb/58.2.P112 [CrossRef]
  • Riedel, O., Emmrich, A., Klotsche, J., Dodel, R., Förstl, H., Maier, W. & Wittchen, H.-U., (2012). Alzheimer's disease: Differences of transdermal versus oral treatment on caregiving time. Dementia and Geriatric Cognitive Disorders EXTRA, 2, 468–480 doi:10.1159/000342929 [CrossRef]
  • Schoenmakers, B., Buntinx, F. & Delepeleire, J. (2009). What is the role of the general practitioner towards the family caregiver of a community-dwelling demented relative?Scandinavian Journal of Primary Health Care, 27, 31–40 doi:10.1080/02813430802588907 [CrossRef]
  • Schulz, R. & Beach, S.R. (1999). Caregiving as a risk factor for mortality—The caregiver health effects study. Journal of the American Medical Association, 282, 2215–2219. doi:10.1001/jama.282.23.2215 [CrossRef]
  • Stone, R., Cafferata, G.L. & Sangl, J. (1987). Caregivers of the frail elderly: A national profile. The Gerontologist, 27, 616–626 doi:10.1093/geront/27.5.616 [CrossRef]
  • Thomas, P., Ingrand, P., Lalloue, F., Hazif-Thomas, C., Billon, R., Viéban, F. & Clément, J.P. (2004). Reasons of informal caregivers for institutionalising dementia patients previously living at home: The Pixel study. International Journal of Geriatric Psychiatry, 19, 127–135. doi:10.1002/gps.1039 [CrossRef]
  • Vaingankar, J.A., Subramaniam, M., Picco, L., Eng, G.K., Shafie, S., Sambasivam, R. & Chong, S.A., (2013). Perceived unmet needs of informal caregivers of people with dementia in Singapore. International Psychogeriatrics, 25, 1605–1619 doi:10.1017/S1041610213001051 [CrossRef]
  • van der Lee, J., Bakker, T., Duivenvoorden, H.J. & Dröes, R.M. (2014). Multivariate models of subjective caregiver burden in dementia: A systematic review. Ageing Research Reviews, 15, 76–93 doi:10.1016/j.arr.2014.03.003 [CrossRef]
  • Wittchen, H.U., Höfler, M. & Meister, W. (2001). Prevalence and recognition of depressive syndromes in German primary care settings: Poorly recognized and treated?International Clinical Psychopharmacology, 16, 121–135. doi:10.1097/00004850-200105000-00001 [CrossRef]
  • Yaffe, M.J. & Klvana, J. (2002). Physician perspectives on the elderly patient-family caregiver-physician encounter. Israel Medical Association Journal, 4, 785–789.
  • Yaffe, M.J., Orzeck, P. & Barylak, L. (2008). Family physicians' perspectives on care of dementia patients and family caregivers. Canadian Family Physician, 54, 1008–1015.
  • Zanetti, O., Frisoni, G., Bianchetti, A., Tamanza, G., Cigoli, V. & Trabucchi, M. (1998). Depressive symptoms of Alzheimer caregivers are mainly due to personal rather than patient factors. International Journal of Geriatric Psychiatry, 13, 358–367. doi:10.1002/(SICI)1099-1166(199806)13:6<358::AID-GPS772>3.0.CO;2-J [CrossRef]

Characteristics of Caregivers and Patientsa

VariableMean (SD)
Caregivers
  Age (years)62.1 (13.6)
  Duration of caregiving (months)40.1 (33.2)
n (%)
  Male:female ratio124 (31):279 (69)
  Relationship to patient
    Spouse195 (48.5)
    Son/daughter146 (36.3)
    Son-in-law/daughter-in-law22 (5.5)
    Other39 (9.4)
  Living with patient250 (63.6)
  Occupational status
    Retired192 (48.7)
    Employed124 (31.5)
    Unemployed56 (14.2)
    Retired early16 (4.1)
    Unable to work6 (1.5)
  No. of comorbid diseases
    None61 (26.3)
    One67 (28.9)
    Two50 (21.5)
     More than two59 (23.3)
Mean (SD)
Patients
  Age (years)77.6 (7.6)
  Duration of Alzheimer's disease (years)3.1 (2.7)
  Mini-Mental State Examination score17.8 (5.6)
  Barthel Index score73.1 (25.5)
  Instrumental Activities of Daily Living score2.3 (2.3)
  Need of daily care by caregiver (minutes) (Q1, Q2)240 (110, 600)
n (%)
  Male:female ratio156 (39):247 (61)
  Severity of Alzheimer's disease
    Moderate265 (65.6)
    Mild138 (34.4)

Physicians' Assessments of Caregivers' Burden, Morbidity, and Need for Assistance

Physicians' Assessment of…Severity, n (%)
Very SevereModerateMildNot at All
Burden
  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)
Morbidity
  Physical morbidity11 (3)41 (11.1)112 (30.4)204 (55.5)
  Mental morbidity19 (5.2)84 (22.9)139 (38)124 (33.9)
Need for support
  Extent of seeking help41 (11.2)121 (33.1)85 (23.2)119 (32.5)
  Extent of needing advice93 (25.2)144 (39)63 (17.1)69 (18.7)
  Extent of needing medical/psychological treatment40 (11.4)79 (22.4)75 (21.3)158 (44.9)
Authors

Dr. Riedel is Research Clinical Psychologist and Research Group Leader, Leibniz Institute for Prevention Research and Epidemiology–BIPS, Bremen; Dr. Klotsche is Statistician, Deutsches Rheuma-Forschungszentrum, Leibniz-Institut, Berlin; and Dr. Wittchen is Professor of Clinical Psychology and Head, Institute of Clinical Psychology and Psychotherapy, Technische Universitaet Dresden, Dresden, Germany.

Drs. Riedel and Klotsche have disclosed no potential conflicts of interest, financial or otherwise. Dr. Wittchen received an unrestricted educational grant by Novartis for conducting this study. The sponsor had no influence on the study design, collection, analysis or interpretation of data; writing the report; or decision to submit the report for publication.

The authors thank all the participating physicians, patients, and their caregivers; and Angela Emmrich, Bibiana Neumann, and Gabriela Zander-Schneider for their help with data collection.

Address correspondence to Oliver Riedel, PhD, Research Clinical Psychologist and Research Group Leader, Leibniz Institute for Prevention Research and Epidemiology–BIPS, Achterstrasse 30, 28359 Bremen, Germany; e-mail: riedel@bips.uni-bremen.de.

Received: March 29, 2016
Accepted: May 16, 2016
Posted Online: June 13, 2016

10.3928/19404921-20160531-02

Sign up to receive

Journal E-contents