caregiver burden characterization in patients with

Caregiver burden characterization in patients withAlzheimer’s disease or vascular dementia

Grazia D’Onofrio1, Daniele Sancarlo1, Filomena Addante1, Filomena Ciccone1, Leandro Cascavilla1,Francesco Paris1, Michele Picoco1, Claudia Nuzzaci1, Anna Chiara Elia1, Antonio Greco1,Ramona Chiarini1,2, Francesco Panza1,3 and Alberto Pilotto1,2

1Geriatric Unit and Laboratory of Gerontology and Geriatrics, Department of Medical Sciences, IRCCS “Casa Sollievo della Sofferenza”, SanGiovanni Rotondo, Foggia, Italy2Geriatrics Unit, Azienda ULSS 16, Padova, Italy3Neurodegenerative Disease Unit, Department of Basic Medicine, Neuroscience, and Sense Organs, University of Bari Aldo Moro, Bari, ItalyCorrespondence to: Daniele Sancarlo, MD, E-mail: [email protected]

Objective: To characterize the differences of caregiver burden in patients with Alzheimer’s disease (AD)and vascular dementia (VaD) in order to improve the care counselling and management plan.

Methods: We included 506 patients consecutively attending the Alzheimer’s Evaluation Unit of aGeriatric Unit, evaluated with Mini Mental State Examination (MMSE), Clinical Dementia Rating(CDR), Hamilton Rating Scale for Depression, and Neuropsychiatric Inventory. To all caregivers wereadministered the Caregiver Burden Inventory (CBI), a 24-item multidimensional questionnaire in which5 subscales explore 5 dimensions of caregiver burden: (1) CBI-Objective; (2) CBI-Developmental; (3)CBI-Physical; (4) CBI-Social; and (5) CBI-Emotional.

Results: The present study included, respectively, 253AD patients and 253 VaD patients. AD patients atbaseline showed a significantly higher instruction level (p< .0001), higher grade of cognitive impair-ment (MMSE, p< .0001), and increased severity stage of dementia (CDR, p< .0001) than VaD patients.AD caregivers, mainly females (p=0.010), devoted significantly more length of time care (in months,p=0.010) and time of daily care (in hours, p=0.011) and showed a significantly higher burden levelin CBI-Objective (p=0.047), CBI-Physical (p< .0001), CBI-Social (p=0.003), CBI-Emotional(p< .0001), and CBI-total score (p< .0001), than VaD caregivers. In both caregiver groups, a higherpresence of spouses and sons (p< .0001) compared to other relatives was observed. AD caregiverburden showed a significant association with sex of caregivers and length of time care in months.

Conclusions: AD caregivers showed a higher burden level than VaD caregivers, and this appeared to beassociated with sex and length of time care. Copyright # 2014 John Wiley & Sons, Ltd.

Key words: caregiver burden; Alzheimer’s disease; vascular dementiaHistory: Received 14 March 2014; Revised 27 September 2014; Accepted 15 October 2014; Published online in Wiley OnlineLibrary (wileyonlinelibrary.com)DOI: 10.1002/gps.4232

Introduction

Dementia is a term that describes disorders causingcognitive impairment severe enough to affect func-tional status and with devastating consequences forthe entire familiar network. The most common formsof dementia are Alzheimer’s disease (AD) and vasculardementia (VaD). The global prevalence of dementia isrising and AD, which accounts for about 60% of all

cases of dementia, represents an increasing challengefor older adults, families, and health care systemsworldwide (Ferri et al., 2005).

One of the recurring themes in literature is theindividual response to caregiving demands. Results areoften different, with studies reporting that some care-givers are early overwhelmed by care responsibilitiesand others showing stability or even decreases in theburden over time (Gaugler et al., 2000). This variability

Copyright # 2014 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2014

RESEARCH ARTICLE

in caregiver response has often been explained interms of the burden models. With this terms is indi-cated a subjective measure of the physical, economic,and psychosocial strain of caregiving, considered theproduct of a dynamic interaction among caregiver re-sources, vulnerabilities, and care demands (Vitaliano,1990). Informal caregivers reported higher levels ofdepression and anxiety (Schulz et al., 1995; Mahoneyet al., 2005), use of psychotropic medication morefrequently (Clipp and George, 1990), engagement infewer protective health behaviours, and increased riskof medical illness (Vitaliano et al., 2003; Son et al.,2007) and mortality (Schulz and Beach, 1999).Higher caregiver burden is also a predictor of earlyinstitutionalization of the patients (Luppa et al.,2008). Reviews of interventions on caregivers havereported small but significant effects upon burdenand have underlined the need for increased under-standing of the dynamics of caregiving toward thedevelopment of more targeted and effective practices(Pinquart and Sörensen, 2006).

Patient variables that have been associated withincreased caregiver burden included cognitive impair-ment, functional decline, and neuropsychiatric symp-toms (NPS) (Coen et al., 1997; Black and Almeida,2004; Machnicki et al., 2009). Equally, functionaldeficits have not been found to strongly predict care-giver burden with negative findings in several studies(Coen et al., 1997; Campbell et al., 2008). As pointedout by Berger et al. (2005), caregiver burden remainedstable, and severe depression decreased over time sug-gesting the need of evaluating the relationship betweendementia symptoms and caregiver perceived burdenover time, in order to understand the changes inthe adaptation to the various caregiving stressors.Moreover, large differences exist between data avail-able on the consequences of caring for AD versusVaD patients. The aim of this study was to deter-mine the differences in term of caregiver burden dueto specific dementia subtypes in order to improve thetreatment and counselling of the familiar network andof the patients.

Methods

Subjects

This study was conducted according to the WorldMedical Association’s 2008 Declaration of Helsinkiand the guidelines for Good Clinical Practice and theStrengthening the Reporting of Observational Studiesin Epidemiology (STROBE) (Von Elm et al., 2007)

and was approved by the local ethics committee.Written informed consent for research was obtainedfrom each patient or from relatives or a legal guardian.

Patients consecutively evaluated from April 2009 toJanuary 2012 at the Alzheimer’s Evaluation Unit of theGeriatric Unit of the IRCCS “Casa Sollievo dellaSofferenza”, San Giovanni Rotondo, Foggia, Italy werescreened for eligibility. Inclusion criteria were: (1) age≥65 years; (2) ability to provide an informed consentor availability of a relatives or a legal guardian in thecase of severe demented patients; (3) diagnosis of ADor VaD; and (4) a complete neuropsychiatric assess-ment. Exclusion criteria were: presence of serious co-morbidity, tumours and other diseases that could becausally related to cognitive impairment (ascertainedblood infections, vitamin B12 deficiency, anemia,disorders of the thyroid, kidneys or liver), history ofalcohol or drug abuse, head trauma, and other causesthat can cause memory impairment. No specificinclusion/exclusion criteria for caregivers were used.

Cognitive evaluation and diagnosis of dementia

In all patients, cognitive status was screened by meansof the Mini-Mental State Examination (MMSE)(Folstein et al., 1975) and the Clinical Dementia Rat-ing scale (CDR) (Hughes et al., 1982; Morris, 1993).The MMSE was used to assess the orientation, mem-ory, attention and calculation, language, ability tofollow commands, reading comprehension, ability towrite a sentence, and ability to copy a drawing. TheCDR was a scale designed to grade subjects from nor-mal function through various stages of dementia. It iscomposed of several domains assessing cognition andfunction and rated according to the degree of cognitiveloss as follows: 0 (no dementia), 0.5 (uncertain ordeferred diagnosis), 1 (mild dementia), 2 (moderatedementia), and 3 (severe dementia).

Dementia was diagnosed following the Diagnosticand Statistical Manual of Mental Disorders—FourthEdition (DMS-IV) (APA, 1994). Diagnoses ofpossible/probable AD were made according to thecriteria of the National Institute of Neurological andCommunicative Disorders and Stroke—Alzheimer’sDisease and Related Disorders Association WorkGroup (NINCDS-ADRDA) (McKhann et al., 1984).Diagnoses of possible/probable VaD were made accord-ing to the criteria of the National Institute of Neurolog-ical Disorders and Stroke—Association Internationalepour la Recherche et l’Enseignement en NeurosciencesWork Group (NINDS-AIREN) (Roman et al., 1993).In uncertain cases, differential diagnosis between AD

G. D’Onofrio et al.


and VaD was based also on the Hachinski IschemicScore (Hachinski et al., 1975): scores ≤4 were consid-ered as probable AD, scores ≥7 were diagnosed asVaD. Diagnosis of AD, and VaD was always supportedby neuroimaging evidence (CT scan and/or NMR). Inparticular, the presence of multiple cortical/subcorticalinfarcts or an infarct in a strategic area such as thethalamus or temporal lobe and/or lesions of the whitematter indicated probable VaD; the absence of theabove-mentioned cerebrovascular lesions indicated AD.

Affective and neuropsychiatric evaluation

Depressive symptoms were evaluated using theHamiltonRating Scale for Depression (HDRS) (Hamilton, 1967)comprising 21 items. The following cut-offs for theHDRS score were used: ≥25: severe depression; 18–24:moderate depression; 8–17: mild depression; and ≤7:absence of depression (Hamilton, 1967). NPS wereevaluated with the Neuropsychiatric Inventory (NPI)(Cummings et al., 1994) including the following 12domains: delusions, hallucinations, agitation/aggression,depression mood, anxiety, euphoria, apathy, disinhibi-tion, irritability/lability, aberrant motor activity, sleepdisturbance, and eating disorder. For each domain theseverity and frequency of the behaviours are determinedaccording to the criteria provided for each domain. Fre-quency is rated from 1 to 4 and severity is scored from1 to 3. The product (severity frequency) is calculatedfor each behavioural change present during the previousmonth or since the last evaluation.

Caregiving assessment

The following parameters were collected by a systematicinterview about the caregivers: gender, relationship withthe patient, length of time care (in months), and time ofdaily care (in hours). To all caregivers were adminis-tered the Caregiver Burden Inventory (CBI) (Novakand Guest, 1989; Zanetti et al., 1999).

The CBI is a 24-item multidimensional question-naire in which 5 subscales explore 5 different dimen-sions of caregiver burden: (1) CBI-Objective: theburden on the caregiver due to shortage of time (items1–5); (2) CBI-Developmental: the caregiver’s sense ofbeing left behind, unable to enjoy the same expectationsand opportunities as his or her peers (items 6–10); (3)CBI-Physical: feelings of fatigue and chronic healthproblems (items 11–14); (4) CBI-Social, which resultsfrom a perceived conflict of roles (items 15–19); and(5) CBI-Emotional, which originates from awarenessof negative feelings towards the patient that can be

induced by the patient’s bizarre and unpredictablebehaviour (items 20–24).

Scores for each item are evaluated using a 5-pointLikert scale ranging from 0 (not at all disruptive) to4 (very disruptive) for a total ranging from 0 to 20for each subscale, with the exception of the CBI-Physical which is composed 4-item: is then applied acorrection factor 1.25. The range of the total scoreranges from 0 to 96: a score >36 indicate a risk of“burning out” whereas scores near or slightly above24 indicate a need to seek some form of respite care.The time to administer is approximately 10–15min.

Statistical analyses

For dichotomous variables, hypotheses regarding differ-ences between the groups were tested using Fisher’sexact test. This analysis was made using the 2-WayContingency Table Analysis available at the InteractiveStatistical Calculation Pages (The R Project for Statisti-cal Computing; available at URL http://www.r-project.org/). For continuous variables, normal distributionwas verified by the Shapiro–Wilk normality test andthe one-sample Kolgomorov–Smirnov test. For nor-mally distributed variables, hypotheses regarding differ-ences among the groups were compared by means ofthe Welch two sample t-test or by means of the analysisof variance (ANOVA) under general linear model. Fornon-normally distributed variables, hypotheses regard-ing differences among the groups were compared bymeans of the Wilcoxon rank sum test with continuitycorrection or by means of the Kruskal–Wallis ranksum test. Finally, AD diagnosis as independent predic-tor of caregiver burden was assessed using univariatemultinomial logistic regression analysis (ANCOVA)including into the model gender, length of time care(in months), and time of day care (in hours). Risks willbe reported as odds ratios (OR) along with their 95%confidence interval (CI). All the statistical analyses weremade with the R Ver. 2.8.1 statistical software package(The R Project for Statistical Computing; available atURL http://www.r-project.org/). Tests in which thep value was smaller than the Type I error rateα=0.05 were declared significant.

Results

Clinical and functional characteristics of patients

During the enrolment period, 570 elderly patientswere screened for the inclusion in the study. Of these,12 patients were excluded because they were younger

Caregiver burden in Alzheimer or vascular dementia


http://www.r-project.org

than 65years, 31 patients had an incomplete examina-tion, and 21 patients had severe comorbidity associ-ated with cognitive impairment. Thus, the finalpopulation included 506 patients, 183 men (36.2%),and 323 women (63.8%) with a mean age of78.04 years±5.70 and a range from 65 to 95years.

253 patients had a diagnosis of AD and 253 of VaD. Demo-graphic and clinical characteristics of AD patients andVaD patients are summarized in Table 1. The two groupsof patients did not differ in age (p=0.108), gender distri-bution (p=0.165), HDRS (p=0.856), and number ofmedications (p=0.157). AD patients had a significantlyhigher instruction level (6.62 vs. 5.13, p<0.0001), highergrade of cognitive impairment in MMSE (18.48 vs. 20.46,p<0.0001), and increased severity stage of dementia inCDR (1.32 vs. 1.15, p< .0001) than VaD patients.Conversely, AD patients showed a significant lowerimpairment in NPI (18.76 vs. 40.52, p<0.0001) thanVaD patients.

Caregiver burden level

The general characteristics of AD and VaD caregiversare summarized in Table 2. AD caregivers showed asignificantly higher prevalence of females (54.9% vs.43.5%, p=0.010), more length of time care (16.28vs. 14.35, p=0.011), and more time of daily care

(8.15 vs. 5.72, p<0.0001). Both groups of caregiversshowed a higher presence of spouses and sons(p<0.0001) compared to other relatives.

Caregiver burden level in AD caregivers and VaDcaregivers are summarized in Table 3. Caregivers ofAD patients showed a significantly higher burden levelin CBI-Objective (12.04 vs. 11.48, p=0.047), CBI-Physical (14.64 vs. 13.44, p<0.0001), CBI-Social(12.90 vs. 12.21, p=0.003), CBI-Emotional (12.50 vs.11.24, p<0.0001), and total score of CBI (64.71 vs.60.83, p<0.0001), than caregivers of VaD patients.The two groups of caregivers did not differ in CBI-Developmental (12.63 vs. 12.46, p=0.468). Univariatemultinomial logistic regression analysis was performedas shown in Table 4. In this analysis, AD caregiverburden showed a significant association with sex ofcaregivers and length of time care in months.

Discussion

In the present study, using a relatively large sample ofnewly diagnosed dementia patients and their caregivers,we investigated whether subtype of dementia is relatedto reported caregiver burden. At the first evaluation,AD patients showed a worst MMSE than patients withVaD. AD caregivers spend more time in caring andshowed a significantly higher burden level in CBI-Objective, CBI-Physical, CBI-Social, CBI-Emotional,

Table 1 Demographic and clinical characteristics of Alzheimer’s disease (AD) and vascular dementia (VaD) patients

AD VaDp

(n = 253) (n = 253)

Age (years)* 78.44 ± 5.15 77.60 ± 6.23 0.108Range 65–90 65–95Sex (M/F) 99/154 84/169 0.165Female 60.9% 66.8%Instruction level (years)* 6.62 ± 5.11 5.13 ± 4.04 <0.0001Range 0–18 0–18MMSE (score)* 18.48 ± 3.83 20.46 ± 3.20 <0.0001Range 11–23 10–23CDR* 1.32 ± 0.51 1.15 ± 0.50 <0.0001Range 1–2 1–2HDRS (score)* 18.08 ± 4.93 18.00 ± 4.86 0.856Range 0–24 0–22NPI (score)* 18.76 ± 16.35 40.52 ± 18.48 <0.0001Range 0–67 0–108N of medications* 2.40 ± 1.68 2.08 ± 1.41 0.157Range 0–6 0–7

MMSE, Mini-Mental State Examination; CDR, Clinical Dementia Rating scale; HDRS, Hamilton Rating Scale for Depression;NPI, Neuropsychiatric Inventory.*Values are presented as mean ± standard deviation.



and CBI-total score, than VaD caregivers. Moreover,AD caregiver burden showed a significant associationwith sex of caregivers and length of time care inmonths.

The literature on caregiving and dementia is con-siderable suggesting that the best recognized markersof caregiving stress were burden and depression(Pearlin et al., 1990). The present study suggested thatcaring in AD patients may amplify caregiver burdensignificantly, especially for the female caregivers whospend more time in care. These findings were in linewith the pooled results of the extensive meta-analysisby Yee and Schulz (2000) on the role of gender differ-ences in the psychiatric morbidity of family caregivers,supporting the idea that female caregivers reportedmore NPS than male caregivers. Our findings alsomirrored recent studies examining the relationshipamong dementia patients and caregivers and reportinglevel of burden. In the present study, AD patients hadhigher grade of cognitive impairment and increased

severity stage of dementia than VaD patients. Con-versely, AD patients showed a significant lower im-pairment in NPS than VaD patients. Germain et al.(2009) reported the results of a Principal ComponentAnalysis on a sample of 1091AD patient/caregiverdyads suggesting that, although the strongest determi-nants of the caregiver burden were NPS, instrumentalactivities of daily living (IADL) difficulties, and timespent caregiving, the impact of the degree of cognitiveimpairment on burden is also significant. The in-creased level of cognitive impairment and dementiastage in our AD patients may partly explain theincreased caregiver burden of this group of patientscompared to those with VaD. Therefore, interventionwith drugs targeting cognitive symptoms may alleviatealso caregiver burden for AD and VaD patients. Infact, neurotransmitter-focused drugs (cholinesteraseinhibitors and memantine) have demonstrated toreduce the severity of cognitive symptoms and NPS

Table 3 Caregiver burden level in Alzheimer’s disease (AD) and vascular dementia (VaD) caregivers explored with the Caregiver Burden Inventory(CBI) subscales

AD(n = 253)

VaD(n = 253)

p

CBI Total (score)* 64.71 ± 11.45 60.83 ± 12.86 <0.0001>Range 33–86 19–86CBI-Objective (score)* 12.04 ± 3.10 11.48 ± 3.14 0.047Range 4–19 4–20CBI-Developmental (score)* 12.63 ± 2.60 12.46 ± 2.60 0.468Range 4–17 4–18CBI-Physical (score)* 14.64 ± 2.16 13.44 ± 2.78 <0.0001Range 9–19 5–19CBI-Social (score)* 12.90 ± 2.64 12.21 ± 2.48 0.003Range 4–16 5–16CBI-Emotional (score)* 12.50 ± 2.04 11.24 ± 2.55 <0.0001Range 8–16 4–18

*Values are presented as mean ± standard deviation.

Table 2 Characteristics of Alzheimer’s disease (AD) and vascular dementia (VaD) caregivers

AD VaD p(n = 253) (n = 253)

Sex (M/F) 114/139 143/110 0.010Female 54.9% 43.5%Length of time care(months)*

16.28 ± 8.18 14.35 ± 8.89 0.011

Range 6–40 6–36Time of day care (h)* 8.15 ± 0.72 5.72 ± 2.20 0.000Range 7–12 4–12Relationship with patientSpouses N (%) 126 (49.8) 172 (68.0)Sons N (%) 91 (36.0) 54 (21.3) <0.0001Other relatives N (%) 30 (11.9) 6 (2.4)Private carers N (%) 6 (2.4) 21 (8.3)

*Values are presented as mean ± standard deviation.



in AD and VaD patients, so improving quality of lifeand decreasing caregiver burden (Raina et al., 2008).Moreover, the present study showed the presence ofhigh mean depression scores in both groups of ADand VaD patients. In a recent systematic review inves-tigating determinants of caregiver burden in dementia,among NPS, patient depressive symptom appeared tobe one of the most consistent determinants ofcaregiver burden (van der Lee et al., 2014). Theseresults confirmed those coming from a cross-sectionalanalysis of data from a longitudinal study of patientswith AD and dementia with Lewy bodies suggestingthat only the presence of patient depressive symptomswas associated with caregiver depression (Ornsteinet al., 2013). Therefore, patient depressive symptomsmay be the most important driver of the relationshipbetween NPS and caregiver depression suggestingfurther testing of the impact of individual NPSon caregivers.

The present findings confirmed previous results ofVetter et al. (1999) that also compared the level of dis-tress of both AD and VaD caregivers and found thatthe perceived severity of symptoms and the subse-quent weight of caregiving burden was considerablyhigher for AD carers than for VaD carers, especiallyin late stage of impairment. Interestingly, in earlystages of disease, VaD caregivers lamented a muchhigher burden than AD caregivers (Vetter et al.,1999). In a similar vein, Yeager et al. (2010) reportedfindings on 784 patients with diagnoses of probableAD or VaD and their caregivers showing that primarydementia diagnosis was not associated with caregiverburden. Moreover, NPS paired with poor IADL func-tioning were associated with the most important care-giver burden. Additionally, caregiver gender (female),depressive symptoms, and being an adult child of thecare recipient also generated increased caregiver bur-den (Yeager et al., 2010). Although the findings of thislatter study did not suggest an effect on caregiver bur-den linked to dementia subtypes, the results of Vetteret al. (1999) and the present findings suggested that, atleast in early stages of disease, AD caregivers may havean increased burden compared to VaD caregivers,with possible delayed long-term care placement forpatients with dementia of vascular origin.

At present, no effective method for reducingdistress or improving well-being in dementia caregivershas been identified in systematic reviews of the existingliterature (Bourgeois et al., 1996; Gallagher-Thompsonand Coon, 2007; Gottlieb and Wolfe, 2002; Schulzet al., 2005). Some meta-analyses reported small to me-dium effect sizes for different interventions for familycaregivers of older adults, with psychoeducational andTa

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psychotherapeutic interventions showing the most con-sistent short-term effects on all outcome measures(Sörensen et al., 2002). Furthermore, studies withneurotransmitter-focused drugs (Feldman et al., 2003)and caregiver trainings (Hyer and Ragan, 2003) havebeen tested for effectiveness on caregiver burden, withonly modest beneficial impact. Similarly, some random-ized clinical trials (RCTs) designed to address NPS in de-mentia, like Clinical Antipsychotic Trials in InterventionEffectiveness (CATIE) (Schneider et al., 2003) and Cho-linesterase Inhibitor and Atypical Neuroleptic in theManagement of Agitation in Alzheimer Disease(CALM-AD) study (Howard et al., 2007), also haveresulted in poor outcomes or effect sizes. These unsatis-factory findings suggest the need for research coveringnon-pharmacologic treatments or other outcomemarkers. Notwithstanding the lack of a clearly definedand effective caregiver intervention, there is an emergingconsensus that optimal care in dementia may require anintegrated approach. Multimodal interventions withcognitive stimulation and behavioural managementfocusing on patient behaviour and caregiver skills,together with the judicious use of pharmacotherapy,psychoeducational intervention regarding managementof NPS, caregiver coping skills training, and environ-mental management may be especially helpful (Gauthieret al., 2010). Ideally, such programs should be tailoredaccording to patient and caregiver factors to preventpatient/caregiver crises. Results from the present studysupported the idea of intervention customization, as wedemonstrated that global cognitive impairment anddiagnosis category and aetiology may cause differentcaregiver responses and levels of burden. In this sense,caregivers of AD patients should be counselled regardingthe particular heavy burden associated with the finalphase of the disease. Given the relatively higher physicaland objective burden found in the present study, espe-cially for relatives engaged in their caregiving activitiesfor a longer and intensive period of time, interventionsshould focus on the dementia-specific burden factors,like aggressiveness and personality changes on the partof the patients, especially for AD, and loss of controland increased workload on the part of the caregivers(Selwood et al., 2007). Our results also showed a greaterimpact of emotional burden for AD caregivers than forVaD caregivers. Successful intervention programs shouldbe designed to help caregivers in developing an effectivecoping style when dealing with the manifestations of AD.Such programs should provide adequate training for bothmanaging the day-to-day demands of the cognitively im-paired relative (by relying, particularly, on problem-focused strategies) and monitoring the emotional distressexperienced by the caregiver (using emotion-focused

strategies). Instrumental strategies seem to promote posi-tive effect, with acceptance techniques consistently corre-sponding to lower levels of pathology. Wishfulness andintrapsychic strategies, on the other hand, are related tomental health problems (Pruchno and Resch, 1989).Helping caregiving spouses to acknowledge and under-stand the changes in their cognitively impaired partnerand also to take action in appropriate ways are suggestedas the best ways to promote positive mental health andalleviate stress (Graham et al., 1997).

Caregiver education programs should include com-ponents addressing the acknowledgement of the dis-ease, the cognitive shift into a caregiving role, and thedevelopment of emotional tolerance, with the aim ofestablishing realistic goals, gauging the patient’s capaci-ties, and designing opportunities for satisfying workand leisure (Hepburn et al., 2003). In fact, the bestresults have been obtained with multi-modal and inten-sive interventions and those targeting caregiver stress in-dividually (Roth et al., 2005; Schulz and Martire, 2004).These recommendations were based on previous studieswith enhanced counselling and support intervention fordementia caregivers (Mittelman, 2003; Mittelman et al.,2004), the Advanced Cognitive Training for Indepen-dent and Vital Elderly (ACTIVE) multicenter trial(Ball et al., 2002), and the more recent RCTs Resourcesfor Enhancing Alzheimer’s Caregiver Health (REACH)I (Schulz et al., 2003; Gitlin et al., 2003) and II (Lykenset al., 2014) with multicomponent interventions,among others (Sörensen et al., 2002).

Limitations of the present study were the absence ofdata about the caregiver age and instruction level andthe study population comprising only Caucasian pa-tients recruited in a single centre, so it is possible thatour findings may not be applicable in other popula-tions. Larger prospective multicenter studies are there-fore needed to confirm our findings.

Conclusion

In conclusion, we found that CBI may be a useful toolin the prediction of caregiver burden and correlatedwell with months of care and hours of daily care. Infact, AD caregivers showed a higher burden level thanVaD caregivers, and this appeared to be associatedwith sex and length of time care. Interventions thatseek to reduce caregiver burden should address intrin-sic specific differences of every patients, also linked todementia diagnosis, and developing tailored actionplans to improve the disease management and theresource consumption.



Conflict of interest

None declared.

Key Points

• Alzheimer’s disease (AD) and vasculardementia (VaD) are common in olderpeople, determining relevant social andhuman consequences for the patients andtheir caregivers.

• Informal caregivers reported higher levels ofdepression and anxiety, use of psychotropicmedication more frequently, engagementin fewer protective health behaviours,and increased risk of medical illness andmortality. High caregiver burden is also apredictor of early institutionalization ofthe patients.

• The present study attempted to investigatethe factors associated with an independentetiology of caregiver burden in AD andVaD caregivers using the Caregiver BurdenInventory.

• AD caregivers showed a higher burden levelthan VaD caregivers, and this appeared tobe associated with sex and length of timecare. Implications for clinical practiceswere discussed.

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