Restricted accessResearch articleFirst published online 2026
Cognitive and behavioral determinants of burden in caregivers of patients with Alzheimer's disease: A focus on sex and gender. The SexDemCare Multicentric Italian Study
Previous studies assessed the relationship between caregivers’ characteristics and caregiver burden. However, comprehensive evaluations of caregivers’ behavioral and psychological traits remain comparatively limited.
Objective
To explore the possible association between the cognitive and behavioral characteristics of caregivers of patients with Alzheimer's disease (AD) and the burden they experience, with a focus on sex/gender differences.
Methods
In this multicenter cross-sectional study within the SINdem “Sex and Gender Differences in Dementia” group, informal caregivers of non-institutionalized AD patients attending the Italian Memory Clinics were enrolled. Caregivers completed the Montreal Cognitive Assessment, Revised Scale for Caregiver Self-Efficacy, 20-Item Toronto Alexithymia Scale, Barratt Impulsiveness Scale-11, Brief COPE, 14-Item Resilience Scale, Ten-Item Big Five Inventory, Five Facet Mindfulness Questionnaire, Empathy Quotient–Short, and the Caregiver Burden Inventory. Sex was considered as a binary variable (female/male); gender-related dimensions were explored indirectly through caregivers’ behavioral and psychological characteristics.
Results
238 caregivers and 238 AD patients were enrolled. A higher burden was associated with more daily caregiving hours, lower self-efficacy, greater impulsivity, difficulties identifying feelings, acting without awareness, a stronger tendency to judge, and higher neuroticism. Female caregiver burden was associated with attentional/motor impulsiveness, lower mindfulness, lower resilience, and lower emotional empathy. Male caregivers showed associations with lower self-efficacy, greater reliance on emotion-focused coping, difficulties identifying feelings, lower non-judging, lower agreeableness, and reduced cognitive empathy.
Conclusions
Caregiver burden was associated with caregivers’ own behavioral and psychological profiles and sex, beyond patient-related factors. These findings support the importance of integrating sex/gender perspectives and targeted interventions into caregiver assessment and support.
Alzheimer Europe. Dementia in Europe yearbook 2019: estimating the prevalence of dementia in Europe. 2020.
2.
EikelboomWSvan den BergESingletonEH, et al.Neuropsychiatric and cognitive symptoms across the Alzheimer disease clinical spectrum: cross-sectional and longitudinal associations. Neurology2021; 97: e1276–e1287.
3.
LucaALucaMSerrettiA. Neuropsychiatric symptoms and Alzheimer’s disease severity: a focus on sex-differences. Clin Gerontol2025; 48: 1179–1185.
4.
ChengST. Dementia caregiver burden: a research update and critical analysis. Curr Psychiatry Rep2017; 19: 64.
5.
FoxJMearnsESLiJ, et al.Indirect costs of Alzheimer’s disease: unpaid caregiver burden and patient productivity loss. Value Health2025; 28: 519–526.
6.
BrodatyHDonkinM. Family caregivers of people with dementia. Dialogues Clin Neurosci2009; 11: 217–228.
7.
KimBNohGOKimK. Behavioural and psychological symptoms of dementia in patients with Alzheimer’s disease and family caregiver burden: a path analysis. BMC Geriatr2021; 21: 160.
8.
ZimmermanSSloanePDWardK, et al.Helping dementia caregivers manage medical problems: benefits of an educational resource. Am J Alzheimers Dis Other Demen2018; 33: 176–183.
9.
CulbersonJWKopelJSeharU, et al.Urgent needs of caregiving in ageing populations with Alzheimer’s disease and other chronic conditions: support our loved ones. Ageing Res Rev2023; 90: 102001.
10.
ScheinJHouleCRUrganusAL, et al.The impact of agitation in dementia on caregivers: a real-world survey. J Alzheimers Dis2022; 88: 663–677.
11.
CarràGCrocamoCBartoliF, et al.First-generation antipsychotics and QTc: any role for mediating variables?Hum Psychopharmacol2016; 31: 313–318.
12.
MühlbauerVMöhlerRDichterMN, et al.Antipsychotics for agitation and psychosis in people with Alzheimer’s disease and vascular dementia. Cochrane Database Syst Rev2021; 12: CD013304.
13.
LloydJMuersJPattersonTG, et al.Self-compassion, coping strategies, and caregiver burden in caregivers of people with dementia. Clin Gerontol2019; 42: 47–59.
14.
GallagherDNi MhaolainACrosbyL, et al.Self-efficacy for managing dementia may protect against burden and depression in Alzheimer’s caregivers. Aging Ment Health2011; 15: 663–670.
15.
AbdelhalimDSAhmedMMHusseinHA, et al.Burden of care, depression, and anxiety among family caregivers of people with dementia. J Prim Care Community Health2024; 15: 21501319241288029.
16.
ConnellR. Gender, health and theory: conceptualizing the issue, in local and world perspective. Soc Sci Med2012; 74: 1675–1683.
17.
SharmaNChakrabartiSGroverS. Gender differences in caregiving among family caregivers of people with mental illnesses. World J Psychiatry2016; 6: 7–17.
18.
de GraaffMLAvan der HeideIRademakersJ, et al.Is caregiver burden associated with sex and gender-related characteristics? A large-scale survey study among family caregivers of people with dementia. BMC Geriatr2025; 25: 171.
19.
RuggianoNBrownELClarkePJ, et al.An evidence-based IT program with chatbot to support caregiving and clinical care for people with dementia: the CareHeroes Development and Usability Pilot. JMIR Aging2024; 7: e57308.
20.
TremontGDavisJDBishopDS, et al.Telephone-delivered psychosocial intervention reduces burden in dementia caregivers. Dementia (London)2008; 7: 503–520.
21.
KosbergJICairlRE. The cost of care Index: a case management tool for screening informal care providers. Gerontologist1986; 26: 273–278.
22.
DaporCDevitaMIannizziP, et al.The Montreal Cognitive Assessment (MoCA) 8.1 version, including the Memory Index Score (MoCA-MIS): Italian norms. Neurol Sci2025; 46: 2581–2589.
23.
SteffenAMGallagher-ThompsonDArenellaKM, et al.Validating the revised Scale for Caregiving Self-Efficacy: a cross-national review. Gerontologist2019; 59: e325–e342.
24.
BagbyRMParkerJDTaylorGJ. The twenty-item Toronto Alexithymia Scale—I. Item selection and cross-validation of the factor structure. J Psychosom Res1994; 38: 23–32.
25.
PattonJHStanfordMSBarrattES. Factor structure of the Barratt Impulsiveness Scale. J Clin Psychol1995; 51: 768–774.
26.
CarverCS. You want to measure coping but your protocol’s too long: consider the Brief COPE. Int J Behav Med1997; 4: 92–100.
27.
CuocoSCarotenutoICappielloA, et al.Reliability and validity of the novel Italian version of the 14-item Resilience Scale (RS-14) in adults. Neurol Sci2022; 43: 3079–3087.
28.
GuidoGPelusoAMCapestroM, et al.An Italian version of the 10-item Big Five Inventory: an application to hedonic and utilitarian shopping values. Pers Individ Dif2015; 76: 135–140.
29.
BaerRASmithGTHopkinsJ, et al.Using self-report assessment methods to explore facets of mindfulness. Assessment2006; 13: 27–45.
30.
WakabayashiABaron-CohenSWheelwrightS, et al.Development of short forms of the Empathy Quotient (EQ-short) and the Systemizing Quotient (SQ-short). Pers Individ Dif2006; 41: 929–940.
31.
NovakMGuestC. Application of a multidimensional caregiver burden inventory. Gerontologist1989; 29: 798–803.
32.
FolsteinMFFolsteinSEMcHughPR. Mini-Mental State”: a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res1975; 12: 189–198.
33.
Carpinelli MazziMIavaroneARussoG, et al.Mini-Mental State Examination: new normative values on subjects in Southern Italy. Aging Clin Exp Res2020; 32: 699–702.
34.
KatzSFordABMoskowitzRW, et al.Studies of illness in the aged. The index of ADL: a standardized measure of biological and psychosocial function. JAMA1963; 185: 914–919.
35.
LawtonMPBrodyEM. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist1969; 9: 179–186.
36.
HughesCPBergLDanzigerWL, et al.A new clinical scale for the staging of dementia. Br J Psychiatry1982; 140: 566–572.
37.
AmrheinVGreenlandSMcShaneB. Scientists rise up against statistical significance. Nature2019; 567: 305–307.
38.
O’CaoimhRCalnanMDharA, et al.Prevalence and predictors of caregiver burden in a memory clinic population. J Alzheimers Dis Rep2021; 5: 739–747.
39.
ConnorsMHSeeherKTeixeira-PintoA, et al.Dementia and caregiver burden: a three-year longitudinal study. Int J Geriatr Psychiatry2020; 35: 250–258.
40.
KimHChangMRoseK, et al.Predictors of caregiver burden in caregivers of individuals with dementia. J Adv Nurs2012; 68: 846–855.
41.
KhalailaR. Does emotional empathy moderate the association between caregiver burden and burnout among Arab family caregivers of older relatives?Health Soc Care Community2022; 30: e2478–e2488.
42.
FangBYanEYangX, et al.Association between caregiver neurotic personality trait and elder abuse: investigating the moderating role of change in the level of caregiver perceived burden. Gerontology2021; 67: 243–254.
43.
VespaASpatuzziRFabbiettiP, et al.Association between care burden, depression and personality traits in Alzheimer’s caregiver: a pilot study. PLoS One2021; 16: e0251813.
44.
TaylorGJBagbyRMParkerJDA. Disorders of affect regulation: alexithymia in medical and psychiatric illness. Cambridge, England: Cambridge University Press, 2009.
45.
KatsifarakiMWoodRL. The impact of alexithymia on burnout amongst relatives of people who suffer from traumatic brain injury. Brain Inj2014; 28: 1389–1395.
46.
LucaMLucaAPattiF, et al.Alexithymia and illness perceptions in persons with multiple sclerosis and their partners. Sci Rep2024; 14: 25116.
47.
SpitzerCSiebel-JurgesUBarnowS, et al.Alexithymia and interpersonal problems. Psychother Psychosom2005; 74: 240–246.
48.
MoustafaAATindleRFrydeckaD, et al.Impulsivity and its relationship with anxiety, depression and stress. Compr Psychiatry2017; 74: 173–179.
49.
Dall’OraCBallJReiniusM, et al.Burnout in nursing: a theoretical review. Hum Resour Health2020; 18: 41.
GauglerJEKaneRLNewcomerR. Resilience and transitions from dementia caregiving. J Gerontol B Psychol Sci Soc Sci2007; 62: P38–P44.
52.
GilsenanJGormanCShevlinM. Explaining caregiver burden in a large sample of UK dementia caregivers: the role of contextual factors, behavioural problems, psychological resilience, and anticipatory grief. Aging Ment Health2023; 27: 1274–1281.
53.
Kabat-ZinnJTNH. Full catastrophe living: using the wisdom of your body and mind to face stress, pain, and illness. London, UK: Little, Brown Book Group, 2013.
54.
KorPPKLiuJYWChienWT. Effects of a modified mindfulness-based cognitive therapy for family caregivers of people with dementia: a randomized clinical trial. Gerontologist2021; 61: 977–990.
55.
InnisADToleaMIGalvinJE. The effect of baseline patient and caregiver mindfulness on dementia outcomes. J Alzheimers Dis2021; 79: 1345–1367.
56.
DuangjinaTJeamjitviboolTParkC, et al.Sex and gender differences in caregiver burden among family caregivers of persons with dementia: a systematic review and meta-analysis. Arch Gerontol Geriatr2025; 138: 105977.
57.
LeeKYefimovaMPugaF, et al.Gender differences in caregiver burden among family caregivers of persons with dementia. J Gerontol Nurs2021; 47: 33–42.
58.
XiongCBiscardiMAstellA, et al.Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: a systematic review. PLoS One2020; 15: e0231848.
59.
YeeJLSchulzR. Gender differences in psychiatric morbidity among family caregivers: a review and analysis. Gerontologist2000; 40: 147–164.
60.
LiRCooperCBradleyJ, et al.Coping strategies and psychological morbidity in family carers of people with dementia: a systematic review and meta-analysis. J Affect Disord2012; 139: 1–11.
61.
MottJSchmidtBMacWilliamsB. Male caregivers: shifting roles among family caregivers. Clin J Oncol Nurs2019; 23: E17–E24.
62.
BuenoMVChaseJD. Gender differences in adverse psychosocial outcomes among family caregivers: a systematic review. West J Nurs Res2023; 45: 78–92.
63.
MancaRMorenoJANicolettiA, et al.Neurocognitive health in LGBTQIA+ older adults: current state of research and recommendations. Front Hum Neurosci2024; 18: 1394374.
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