Psychological Burdens of Alzheimer’s Caregivers and Their Coping Mechanisms

EXTENDED ABSTRACT

Background

Alzheimer’s disease is a progressive and irreversible neurodegenerative disorder that affects not only patients but also the daily lives, social relationships, and psychological health of those who provide continuing care [1]. Prolonged caregiving demands can generate a substantial psychological burden characterized by negative emotional and cognitive experiences, including stress, anxiety, depressive symptoms, exhaustion, and burnout [2–6]. Caregivers must also respond to changing patient behavior and increasing dependence while balancing employment, family responsibilities, personal health, and financial obligations. Within the stress-and-coping framework, caregivers appraise the demands they face and select coping responses intended to reduce their adverse effects [7–9]. These responses may be broadly active or passive, and their usefulness depends on personal characteristics, available resources, and the intensity of caregiving stress [10–12]. Previous research has linked greater patient functional impairment to higher caregiver burden [14], shown potential benefits of caregiver education and nursing intervention [15], documented worse psychosocial outcomes among Alzheimer caregivers than noncaregivers [16], and associated caregiving burden with poorer quality of life [17]. Family stigma and socioeconomic circumstances may further shape caregiving experiences [18], while psychological interventions can reduce some aspects of caregiver burden [19]. However, prior work has often emphasized limited dimensions or short-term consequences of caregiving, with less attention to the cultural and social context in which burdens and coping strategies develop [20–24]. A qualitative approach can capture how caregivers themselves describe these experiences, including both harmful consequences and potential positive changes. Accordingly, this study aimed to explore the psychological and physical burdens experienced by caregivers of people with Alzheimer’s disease in Richmond Hill, Ontario, and to identify the challenges, coping mechanisms, health effects, and positive outcomes reported by caregivers.

Methods

This qualitative study was conducted from April to July 2023 among caregivers of patients with Alzheimer’s disease in Richmond Hill, Ontario, Canada. Participants were recruited purposively from Alzheimer treatment centers in the area, with sampling continuing until theoretical saturation was reached, defined as the point at which additional interviews no longer yielded substantively new information. Twenty-six caregivers participated. Eligibility criteria included at least two years of experience caring for a patient with Alzheimer’s disease, ability to participate in a semi-structured interview, and provision of informed consent. Information on patient age, sex, and disease stage was considered when examining caregiver burden, while the interview process also gathered contextual information about caregiver education, monthly income, and whether the caregiver lived with the patient. Data were collected using semi-structured interviews guided by open-ended questions designed to elicit detailed accounts of daily caregiving challenges, effects of caregiving on physical and psychological health, coping strategies, and access to family, friendship, or group-based social support. The interview guide was developed through review of relevant literature and consultation with specialists in psychology and health care to support content validity, and interviewers received training before data collection. Interviews were transcribed in full and analyzed using qualitative thematic analysis. The research team coded meaningful units, compared recurrent patterns, and grouped related codes into subcategories and higher-order themes according to their recurrence and importance. NVivo software was used to assist organization and analysis. Several procedures were applied to strengthen trustworthiness: triangulation of information from different sources, peer review of coding and interpretation, member checking by sharing selected findings and themes with participants, documentation of the analytic process as an audit trail, and independent coding by two researchers followed by comparison and resolution of disagreements. The study received ethics approval from the KMAN Research Institute (7A.2023.6KEC), and written informed consent was obtained before data collection; participants were informed about study aims, data collection procedures, privacy, and confidentiality.

Results

The 26 participants represented a varied caregiver sample. Eighteen caregivers (approximately 69%) were women and eight (approximately 31%) were men. Participant age ranged from 30 to 65 years; the largest age group was 50–59 years, comprising 12 caregivers (approximately 46%). Fifteen participants (approximately 58%) had more than five years of experience caring for a person with Alzheimer’s disease. The thematic analysis identified four overarching themes: daily challenges, coping mechanisms, health impacts, and positive gains. These themes and their subcategories are summarized in Table 1.

Table 1. Qualitative themes, subcategories, and open codes identified among caregivers of patients with Alzheimer’s disease.

Daily challenges encompassed the practical and interpersonal pressures of providing care. Time-management difficulties involved daily scheduling, conflicting commitments, and persistent lack of time. Financial problems included direct care expenses, insurance concerns, and reduced income. Caregivers also described behavioral problems in patients, particularly aggression, confusion, and mood fluctuations. Social support emerged as both a resource and a deficit: some caregivers received help from family and friends, whereas others experienced social isolation. Coping mechanisms varied substantially. Active coping included seeking information, obtaining counseling, and planning how to confront caregiving problems. Passive coping included denial, withdrawal from confrontation, and avoidance. A third subgroup of supportive coping strategies involved psychological support, counseling services, and caregiver support groups. Health impacts were reported in both physical and psychological domains. Physical consequences included fatigue, insomnia, and nutritional problems, while psychological effects included stress, depression, and anxiety. Despite these burdens, participants also described positive gains associated with caregiving. Personal growth included greater patience, stronger caregiving skills, and improved understanding of Alzheimer’s disease. Spiritual gains included a sense of fulfilling a duty and strengthening of religious beliefs. Some caregivers reported closer family relationships and improved interpersonal bonds, and others described greater acceptance from the community or access to new support resources. Taken together, the findings show that caregiving was not a uniformly negative experience: substantial burden coexisted with resilience, active problem solving, social resources, and meaning-making. The study nevertheless identified important constraints. Because participants were drawn from a limited geographic area in Richmond Hill, the findings may not transfer directly to other cultural or socioeconomic settings. The semi-structured interview format and qualitative design also do not provide quantitative estimates of the prevalence or magnitude of caregiver burden.

Conclusion

Caregivers of people with Alzheimer’s disease experienced considerable psychological and physical burden, particularly through time pressure, financial strain, difficult patient behaviors, social isolation, fatigue, sleep disturbance, stress, depression, and anxiety. Their ability to manage these demands was strongly shaped by the coping strategies and social resources available to them. Active coping, counseling, family support, and support groups were important adaptive resources, while some caregivers also reported personal growth, strengthened spiritual values, improved family relationships, and positive community support. These findings support caregiver-focused interventions that strengthen social support systems, provide targeted education and counseling resources, and address both practical and psychological aspects of caregiving.

Keywords: Alzheimer Disease, Caregiver Burden, Coping Mechanisms, Psychological Impact, Social Support

REFERENCES

1. Alebooyeh S, Jafari A. The Prediction of Positive and Negative Affect based on Self-Compassion with the mediating role of Personality Types A and B in Alzheimer's Caregivers. JARAC. 2021;3(4):1-14. Link
2. Khajeh Hasani Rabari F, Rezaei F, Mirzai F, Sedighi F. Investigating the role of coping strategies, personality traits and mindfulness with self-care in leukemia patients. JARAC. 2023;5(4):51-9. DOI: 10.61838/kman.jarac.5.4.7
3. Karbasi F, Shahnifeiz K, Rezaie Va, Ostovarzadeh M. Effectiveness of Positive Mindfulness Therapy on Mental Well-being, Quality of Life and Stress Coping Strategies in women With Bipolar Disorder. Psychology of Woman Journal. 2024;5(2). DOI: 10.61838/kman.pwj.4.2.9
4. Bulut S, Bukhori B, Bhat RH. The Experience of Psychosomatic Disorders among Adolescents: Challenges and Coping Strategies. JPPR. 2024;2(2):19-25. DOI: 10.61838/kman.jppr.2.2.4
5. Goli F. Beyond Biology: The Personality Underpinnings of Chronic Pain. JPPR. 2024;2(2):1-3. DOI: 10.61838/kman.jppr.2.2.1
6. Rostami M, Bulut S, Coelho O, Riyono B. Living with Fibromyalgia: A Phenomenological Study of Pain, Fatigue, and Coping. JPPR. 2024;2(1):16-23. DOI: 10.61838/kman.jppr.2.1.4
7. Golparvar M, Parsakia K. Building Resilience: Psychological Approaches to Prevent Burnout in Health Professionals. KMAN Counseling & Psychology Nexus. 2023;1(1):159-166. DOI: 10.61838/kman.psychnexus.1.1.18
8. Khajeh Naeeni S, Nouhi N. Job Burnout Mitigation: A Comprehensive Review of Contemporary Strategies and Interventions. KMAN Counseling & Psychology Nexus. 2023;1(1):91-101. DOI: 10.61838/kman.psychnexus.1.1.12
9. Eslami A, Mirzahosseini H, Monirpour N. Modeling the mediating role of thinking styles in the relationship between human agency and self-regulation of knowledge by choosing styles to cope with academic stress in male students. JAYPS. 2023;4(1):9-19. DOI: 10.61838/kman.jayps.4.1.2
10. Lee A, Wong Y, Neo XS. Coping Mechanisms Among Patients with Terminal Illnesses. KMAN Counseling & Psychology Nexus. 2024;2(1):91-7. DOI: 10.61838/kman.psychnexus.2.1.14
11. Boostani A, Tabatabaeinejad FS. Effectiveness of Positive-Focused Mindfulness Therapy on Mental Well-being, Quality of Life, and Stress Coping Strategies in Women with Bipolar Disorder. KMAN Counseling & Psychology Nexus. 2023;1(1):74-83. DOI: 10.61838/kman.psychnexus.1.1.9
12. Saadati N, Kiliçaslan F, Salami MO. The Psychosomatic Effects of Childhood Trauma: Insights from Adult Survivors. JPPR. 2024;2(2):34-40. DOI: 10.61838/kman.jppr.2.2.6
13. Sefotho MM, Serjanaj B, Karthik S, Saadati SA. The Psychosomatic Interface of Stress and Skin Disorders: Patient Experiences and Perceptions. JPPR. 2024;2(2):26-33. DOI: 10.61838/kman.jppr.2.2.5
14. Lara-Ruiz J, Kauzor K, Gonzalez K, Nakhla MZ, Banuelos D, Woo E, et al. The Functional Ability of MCI and Alzheimer’s Patients Predicts Caregiver Burden. Geropsych. 2019;32(1):31-9. PMID: 31602199 DOI: 10.1024/1662-9647/a000200
15. Ibrahim Mahmoud Z, Sadek Abd El-Hameed H, Mohamed Sobhy Elsayed D. Nursing Intervention for Caregivers of Patients with Alzheimer's Disease regarding Burden of Care. Journal of Nursing Science Benha University. 2022;3(1):342-356. DOI: 10.21608/jnsbu.2022.213870
16. Mausbach BT, Chattillion EA, Roepke SK, Patterson TL, Grant I. A Comparison of Psychosocial Outcomes In Elderly Alzheimer Caregivers And Noncaregivers. Am J Geriatr Psychiatry. 2013;21(1):5-13. PMID: 23290198 DOI: 10.1016/j.jagp.2012.10.001
17. Pudelewicz A, Talarska D, Bączyk G. Burden of caregivers of patients with Alzheimer's disease. Scandinavian Journal of Caring Sciences. 2019;33(2):336-41. DOI: 10.1111/scs.12626
18. Velilla L, Acosta-Baena N, Allen IE, Lopera F, Kramer JH. Analysis of Family Stigma and Socioeconomic Factors Impact Among Caregivers of Patients With Early- And Late-Onset Alzheimer's Disease and Frontotemporal Dementia. Scientific Reports. 2022;12(1):12663. DOI: 10.1038/s41598-022-16400-2
19. Shabahang R, Emadi SJ, Sheykhangafshe FB, khanzadeh AAH, Mousavi SM. The Effectiveness of CBTAC Protocol on Burdens of Alzheimer’s Disease on Caregivers and Their Sense of Coherence. Int Clin Neurosci J. 2020;7(2):79-87. DOI: 10.34172/icnj.2020.06
20. Çevik M, Toker H. Social Determinants of Health: Legal Frameworks for Addressing Inequities. Interdisciplinary Studies in Society, Law, and Politics. 2022;1(1):14-22. DOI: 10.61838/kman.isslp.1.1.4
21. Kotwal S. Addressing the Gap: The Importance of Mental Health Legislation and Policy. Interdisciplinary Studies in Society, Law, and Politics. 2022;1(2):1-3. DOI: 10.61838/kman.isslp.1.2.1
22. Boltivets S. Cultural Beliefs and Mental Health. Journal of Psychosociological Research in Family and Culture. 2023;1(4):1-3. Link
23. Rostami M, Navabinejad S. Cultural Sensitivity in Family Research: Bridging Gaps. Journal of Psychosociological Research in Family and Culture. 2023;1(2):1-4. DOI: 10.61838/kman.jprfc.1.2.1
24. Zadhasan Z. Communication Within Families: Understanding Patterns and Impacts on Mental Health. Journal of Psychosociological Research in Family and Culture. 2023;1(2):5-13. DOI: 10.61838/kman.jprfc.1.2.2
25. Rezaei H, Niksima SH, Gheshlagh RG. Burden of Care in Caregivers of Iranian Patients With Chronic Disorders: A Systematic Review and Meta-Analysis. Health Qual Life Outcomes. 2020;18:1. DOI: 10.1186/s12955-020-01503-z
26. Saadati N. Ageism and Sexism: The Double Jeopardy Affecting Older Women's Mental Health. Psychology of Woman Journal. 2024;5(2):1-3. DOI: 10.61838/kman.pwj.5.2.1
27. Lotfihaqiqat A, Monirpoor N, ZarghamHajebi M. Providing a Structural Model of Early Helplessness in Cancer Patients based on Early Maladaptive Schemas (EMSs) and Coping Strategies with the Mediating Role of Family Codependency. Applied Family Therapy Journal. 2021;2(3):511-34. Link
28. Mashoofi M, Dolati-khoortomi M, Faramarzi S, Jafari Sayarestaq M, Mansouri S, Memarpour asyaban N. The efficacy of acceptance and commitment therapy and comparing it with cognitive behavioral therapy on coping methods, difficulty in emotion regulation, and mental health among caretakers of chronic patients. Journal of Adolescent and Youth Psychological Studies. 2021;2(1):183-95. Link
29. Zadhasan Z, Gholamzadeh Jofreh M. The effectiveness of emotion-focused cognitive therapy on corona anxiety, sense of coherence and post-traumatic growth in women recovered from corona. Applied Family Therapy Journal. 2023;4(1):672-87. DOI: 10.61838/kman.aftj.4.1.34
30. Mohammad H, Borjali M. Predicting Post-Traumatic Growth based on Attachment Styles and Cognitive Emotion Regulation in Iranian immigrant girls. Applied Family Therapy Journal. 2021;2(4):369-82. Link