By Bhavya Gupta, Sanjna & Siddhii

Abstract

Caregiving for older adults, particularly those with chronic illnesses, often leads to significant physical, emotional, and financial strain, called caregiver burden. The burden has an inherent connection with social isolation, emotional discomfort, and the deterioration of physical health, further impacting the quality of care given. This article discusses how interventions like caregiver training, telehealth services (Tele-MANAS), and community-based programs (Atmiyata) can alleviate this burden. Addressing caregiver stress through emotional and instrumental support and policy measures such as financial aid and awareness campaigns is essential to improve outcomes for caregivers and older adults.

Introduction

Caregiver is referred to as someone who provides support and adheres to the needs of someone who is not fully independent, individuals such as an infants, disabled and elderly are usually in need of assistance (American Psychological Association, 2023). Support for caregivers is a key intervention to enhance the care of older adults and thereby reduce the mental health risk to caregivers.

It has been observed that mental health conditions, such as depression and anxiety, among older adults are common because of the impact of chronic illnesses (G. & V., 2022). A high-risk group, owing to stress and mental health issues, is caregivers themselves, who can also suffer from caregiver burnout (Boisvert et al., 2022). Proper caregiver support may mitigate stress and improve caregivers’ and care recipients’ mental health outcomes (Hall et al., 2022). Areas of focus for support include resource provision, care for the caregiver, and respite-any of these would be critical in promoting the caregiver’s well-being (Hall et al., 2024).

Many caregivers, however, are left without support, which ultimately corrupts their mental health and delivers a poor-quality service for older adults. Therefore, addressing these gaps is vital for the improved health of caregivers and care recipients alike.

Impact of Caregiver’s Support

Emotional Support

For human beings, a social species, social relations are crucial to ensure safety, reproductive success, and survival. From an evolutionary perspective, social relations with a mate or a tribe improve the chances of survival in hostile environments (Reinwarth et al., 2024). Emotional support is the key to improving the conditions of older adults who live in a community with a lack of emotional support (Devkota et al., 2023). Along with a lack of emotional support, older adults live with a lack of financial aid, which makes them ineligible for healthcare use. Due to this older adults not only suffer financially but suffer psychologically.  According to a study by Yon and colleagues (2017), it is estimated that 5.7% of individuals aged 60 years and older are victims of EA (elder abuse). Additionally, 28.5% of this population experiences loneliness in their last years of life, and 28.4% suffer from depression.

Social isolation and loneliness are significant health risks for older adults and due to the COVID-19 pandemic, the number of social isolations among older adults has increased. This not only destroys the mental health of older adults but their physical health also deteriorates (Czaja et al., 2021). Social relationships are important aspects of one ‘s personal life. As age increases the depressive symptoms are most common in older adults. Factors like loneliness, physical illness, and lack of purpose affect older adult’s mental health. Studies indicate that older adults experience illness and low levels of happiness. Mental health issues in older adults require attention and support. Research conducted in China examined the impact of social activities on the mental health of older adults. Participants engaged in various activities, such as joining clubs, visiting friends, and playing games, which positively influenced their mental well-being (Gao et al., 2024). Such activities help lessen loneliness and foster a sense of belonging.

Consistent emotional support from family members, peers, and caregivers can play a crucial part in diminishing depressive episodes and can help enhance resilience (Upasen et al., 2024c)

Instrumental Support

Instrumental support or Tangible support refers to the assistance that is provided by caregivers to help older adults carry out essential day-to-day activities (Schultz et al., 2022). These activities include:

• Bathing
• Toileting
• Eating
• Preparing meals throughout the day
• Medical Care
• Transportation

Research findings indicate that anticipated instrumental support from various sources significantly reduces the odds of depressive symptoms. Specifically, anticipated support from spouses and children lowers the risk by 52% and 46%, respectively, compared to those without such anticipation (Fu et al., 2024c).  Along with psychological stressors, older adults also face numerous challenges such as physical weakness, and chronic illness, which make them dependent on others. Instrumental support therefore helps to elevate such problems (Fu et al., 2024c):

1. Encourage self-governance:

Caregivers assist older adults, fostering independence and control over their lives, ultimately reducing the risk of future psychological issues.

2. Strengthening Relationships:

Support systems, such as emotional and instrumental support, can strengthen the connection and bond between caregivers and older adults.

3. Helps in reducing the daily hassles:

Providing support for older adults in managing their daily activities, including medication management, significantly enhances their overall quality of life.

Caregiver Burden and Mental Health Outcomes

Caregiver burden is a concept of understanding the physical, emotional and financial strain or stress experienced by caregivers, while they care for patients with chronic diseases or disabilities. It is manifested in different forms such as social isolation, psychological distress and physical health deterioration that further affects the quality of care that is provided to the patient (Bakkali & Renzulli, 2023; Parvizi & Ay, 2024).

Standardized tools such as the Zarit Burden Inventory and the Burden Scale for Family Caregivers are often used in the assessment of caregiver burden and quantify their impact on caregivers, by helping in its measurement (Baysal & Corabay, 2024).

Caregiver burden comprises different dimensions such as objective, subjective, and social burdens. All of them are quite relevant and affect caregivers’ lives, as well as the effectiveness of their caregiving.

Objective Burden: The objective burden is all about objective things associated with the process of caregiving. These may include:

Time Expenditure: Time expenditure has been identified as the most significant burden reported by care partners in most cases, affecting 88% of care partners (Villeneuve et al., 2023).

Financial Strain: Most caregivers suffer from financial constraints, with research showing that financial inadequacy is associated with increased levels of burden (Pavarini et al., 2023).

Physical Efforts: Caregiving leads to physical exhaustion, mainly in older caregivers, and most experience pain and frailty (Pavarini et al., 2023).

Subjective Burden: Subjective burden includes emotional and psychological reactions, such as:

Emotional Distress: Most caregivers report guilt, frustration, and anxiety, with 29% reporting mild subjective burden (Villeneuve et al., 2023).

Coping Strategies: Ineffective coping strategies lead to more perceived burden, while positive coping strategies alleviate burden (Muñoz-Cruz et al., 2024).

Social Burden: Social burden is the effect on the social relationship of the caregiver:

Isolation: Caregivers are often socially isolated, which can worsen emotional distress (Hicks et al., 2022).

Family Context: Family dysfunction is correlated with caregiver burden; therefore, a supportive family structure is essential (Pavarini et al., 2023).

Factors Influencing Caregiver Burden

The burden endured by a caregiver is determined by the situational conditions of the caretaker, while demographic characteristics are influential in caregiver contexts. They can enable the building of a supportive environment.

Care Recipient’s Condition

Chronic Illness and Dementia: Due to the multifaceted nature of their care needs, this will necessarily cause an increase in the burden placed upon caregivers among those caring for a person with dementia or chronic illnesses (Choi et al., 2024; Sun et al., 2023).

Severity of Condition: More severe diseases, notably dementia, are linked to a further burden because of the challenges of troublesome symptoms (Seong et al., 2023; Steinsheim et al., 2023).

Duration of Care: Longer duration of care leads to greater emotional distress (Sun et al., 2023).

Caregiver’s Demographics

Age and Gender: The burden usually increases for older and female caregivers under any combination of factors, while some may be social expectations (Seong et al., 2023; Steinsheim et al., 2023).

Employment Status: Tension from juggling a job and caregiving commitments increased the burden (Choi et al., 2024).

Other Influences

Intensity of Care: More hours and effort engaged in caregiving directly exacerbate stress levels (Sun et al., 2023; Steinsheim et al., 2023).

Social Support: A good network of support eases the burden, while that of isolation increases it (Sun et al., 2023).

While it is a challenge to undertake, some caregivers find satisfaction in the job of providing, which calls for intervention addressing burdens while also enhancing positive caregiving experiences.

The relationship of caregiver burden with mental health outcomes in older adults represents a significant latent risk, especially across dimensions of psychological and physical health. This summary pertains to its effects and approaches for reducing such a burden.

Effects on Mental Health
Caregivers show a greater likelihood of being depressed and anxious. During the COVID-19 pandemic, 19.3% reported severe psychological distress (Nakamoto et al., 2022).
Common factors for emotional or psychological exhaustion and burnout bear down on the caregivers who provide this service (Svec & Nemmers, 2023).

Correlations with Physical Health
Chronic stress from caregiving leads to immune suppression and higher mortality rates (Christian et al., 2023).
Caregivers of dementia patients generally report poorer mental and physical health status, putting them at further risk of health decline (Barrero-Mejias et al., 2024).

Age-Related Ailing
Stressed older caregivers must contend with the demands of their ill health and societal expectations, particularly in cultures like India (Barrero-Mejias et al., 2024).

Ways to Alleviate the Burden
Respite care and support groups could ease stress and provide emotional respite (Svec & Nemmers, 2023).
Education and training improve caregiver efficiency, while self-care acts like mindfulness safeguard mental health (Barrero-Mejias et al., 2024).

Effective Interventions for Promoting Caregiver Support and Mental Health Outcomes

Home-Based Interventions for Dementia Care

The Home Care Program for Dementia in Goa demonstrated how community-based support could transform caregiving outcomes. Through this intervention, caregivers received structured training, psychiatric assessments, and guidance on behaviour management. Outcomes included a significant reduction in caregiver mental distress and lower distress due to behavioural disturbances in dementia patients. Home-based support for caregivers of persons with dementia is feasible and acceptable and leads to significant improvements in caregiver mental health and the burden of caring (Dias et al., 2008).

Yoga and Mental Well-being

Integrating yoga into caregiver training has proven effective in improving mental health outcomes. A randomised controlled trial in Bengaluru implemented a caregiver-specific yoga module (CYM), involving asanas, pranayama, and meditation. After 29 days, caregivers reported a significant reduction in psychological distress and an improvement in mental well-being. This culturally tailored intervention demonstrates how traditional practices can address caregiver stress holistically (Gandhi et al., 2019).

Tele-MANAS Initiative

Tele-MANAS (Tele Mental Health Assistance and Networking Across States) is a national telehealth initiative that has revolutionised access to mental health services. By providing free counselling, psychotherapy, and psychiatric consultations via a 24/7 toll-free helpline, Tele-MANAS addressed the needs of over 14.7 lakh callers in its first two years (Ministry of Health and Family Welfare, 2024). The program’s ability to deliver mental health services on such a broad scale has drawn praise from global health authorities, with The World Health Organisation (WHO) hailing Tele MANAS as an innovative and effective model for delivering mental health care. This initiative reduced logistical barriers to accessing care, with 70% of users reporting savings on travel costs. Such scalable models showcase how technology can bridge gaps in mental health support for caregivers and the elderly.

Community-Based Interventions: The Atmiyata Programme

The Atmiyata intervention in rural Gujarat leveraged community health volunteers (Champions) to provide evidence-based mental health counselling. Covering a population of 1.52 million, the program reduced caregiver distress by 32% and demonstrated high cost-effectiveness. Structured as a randomised trial, Atmiyata emphasised the importance of community ownership in addressing mental health challenges (Joag et al., 2020).

The Goodfellows Programme

According to the 2011 census, almost 15 million elderly people in India live by themselves. The Goodfellows initiative, launched by Shantanu Naidu under the mentorship of Ratan Tata, provides intergenerational companionship for the elderly. By pairing young graduates with senior citizens, the program addresses loneliness, a significant contributor to caregiver stress. Elderly participants reported a 65% improvement in life satisfaction, while caregivers experienced a 25% reduction in emotional burnout. This innovative model demonstrates the potential of leveraging intergenerational connections to relieve the burden of caregiving responsibilities (YourStory, 2021).

Tele-Tandem for Dementia Caregivers

The Tele-Tandem Program demonstrated significant improvements in caregiver quality of life using a telephone-based cognitive behavioural therapy modality. Participants in the intervention group reported physical and psychological health scores that were higher, along with improved general health satisfaction compared to controls. Such interventions address barriers to accessing in-person services and provide caregivers with practical coping strategies (PMC, 2024). Through remote consultations, monitoring, and diagnosis facilitated by technology, telemedicine extends healthcare reach to remote and underserved areas while enhancing temporal accessibility with round-the-clock availability (Anawade et al., 2024).

Policy Recommendations for Scaling and Sustaining Interventions

Standardising Caregiver Training is crucial for the nationwide implementation of structured caregiver training programs. Drawing examples from the Goa dementia initiative can provide caregivers with the necessary skills and psychological tools. Integrating yoga-based modules into these programs would address the physical and emotional dimensions of caregiving. Public-private partnerships should drive this expansion to ensure quality and accessibility. Community-driven programs like Atmiyata have demonstrated scalability and cost-effectiveness. Policies should prioritise training community health workers to provide localised mental health support for caregivers. Integrating these models into the National Mental Health Programme (NMHP) would enhance reach and sustainability. Adding on, investments in digital infrastructure are critical to ensure equitable access to technology-based interventions. Tele-MANAS, which reached 14.7 lakh users, should serve as a blueprint for scaling telehealth services to rural and underserved areas. Subsidising mobile applications and teleconsultation services would further reduce financial barriers for low-income families. Policies must also introduce caregiver allowances, tax benefits, and subsidised health care for elderly patients, as financial strain is a significant stressor for caregivers. Kerala’s pilot program, which covered 30% of caregiving expenses for low-income families, offers a model for national replication. A nationwide campaign to promote caregiver support and mental health awareness is also crucial. Educational workshops, public service announcements, and digital content can reduce stigma and encourage caregivers to seek help. (The Hindu Bureau, 2024). Finally, research frameworks are necessary to evaluate the long-term impact of caregiver interventions. Funding for longitudinal studies would provide data-driven insights into best practices and guide resource allocation.

Conclusion

In conclusion, caregiver support in the form of emotional and instrumental support involves integral mental health components for older adults. Such assistance alleviates feelings of loneliness and depression in older adults and further improves their overall lives. The mental health of the caregiver is equally important to that of the caretaker; nonetheless, the stresses of caregiver fatigue have been compounded by the state of the caregiver’s health and lack of support from other people or limited funds available. Thus, carefully considering such works allows them to accept help from others. Various interventions are now available that not only promote caregiver support and the mental health of older adults but also enhance caregiving skills and introduce them to help them develop positive coping mechanisms. Also, programs such as Goa Home Care initiatives, Atmiyata, Technology-driven models, and innovative methods like yoga-based caregiving training will help the well-being and alleviate stress.

References

Ajithakumari, G., & Hemavathy, V. (2022). Caregivers Burnout Syndrome: Support Yourself While Caring For A Loved One. Cardiometry, (24), 965-969.

Anawade, P. A., Sharma, D., & Gahane, S. (2024). A Comprehensive Review on Exploring the Impact of Telemedicine on Healthcare Accessibility. Cureus. https://doi.org/10.7759/cureus.55996

Bakkali, L., & Renzulli, B. (2023). Assessing caregiver burden. Alzheimer’s & Dementia, 19, e075057.

Barrero-Mejias, M. A., Gómez-Martínez, S., González-Moreno, J., Rueda-Extremera, M., Izquierdo-Sotorrio, E., & García, M. C. (2024). Effectiveness of psychological interventions for reducing depressive symptomatology and overload and improving quality of life in informal caregivers of non-institutionalized dependent elderly: a systematic review. Frontiers in Medicine, 11. https://doi.org/10.3389/fmed.2024.1394640

Baysal, Ş. G., & Çorabay, S. (2024). Caregiver Burden and Depression in Parents of Children with Chronic Diseases. Turkish Archives of Pediatrics, 59(1), 70.

Boisvert, D. L., Zubatsky, M., & Berg‐Weger, M. (2022). Caring for the caregiver. Pathy’s Principles and Practice of Geriatric Medicine, 2, 1552-1559.

Choi, J. Y., Lee, S. H., & Yu, S. (2024). Exploring Factors Influencing Caregiver Burden: A Systematic Review of Family Caregivers of Older Adults with Chronic Illness in Local Communities. Healthcare, 12(10), 1002. https://doi.org/10.3390/healthcare12101002

Christian, L. M., Wilson, S. J., Madison, A. A., Prakash, R. S., Burd, C. E., Rosko, A. E., & Kiecolt-Glaser, J. K. (2023). Understanding the health effects of caregiving stress: New directions in molecular aging. Ageing Research Reviews, 92, 102096. https://doi.org/10.1016/j.arr.2023.102096

Czaja, S. J., Moxley, J. H., & Rogers, W. A. (2021). Social support, isolation, loneliness, and health among older adults in the PRISM randomized controlled trial. Frontiers in Psychology, 12. https://doi.org/10.3389/fpsyg.2021.728658

Devkota, R., Cummings, G., Hunter, K. F., Maxwell, C., Shrestha, S., Dennett, L., & Hoben, M. (2023). Factors influencing emotional support of older adults living in the community: a scoping review protocol. Systematic Reviews, 12(1). https://doi.org/10.1186/s13643-023-02346-7

Dias, A., Dewey, M. E., D’Souza, J., Dhume, R., Motghare, D. D., Shaji, K. S., Menon, R., Prince, M., & Patel, V. (2008). The Effectiveness of a Home Care Program for Supporting Caregivers of Persons with Dementia in Developing Countries: A Randomised Controlled Trial from Goa, India. PLoS ONE, 3(6), e2333. https://doi.org/10.1371/journal.pone.0002333

Fu, D., Wang, F., Gao, B., Bai, Q., Liu, G., & Zhu, J. (2024). The influence of different sources of anticipated instrumental support on depressive symptoms in older adults. Frontiers in Public Health, 12. https://doi.org/10.3389/fpubh.2024.1278901

Gao, D., Li, R., & Yang, Y. (2024). The impact of social activities on mental health among older adults in China. Frontiers in Public Health, 12. https://doi.org/10.3389/fpubh.2024.1422246

Gandhi, S., Palled, V. K., Sahu, M., Jagannathan, A., Khanna, M., & Jose, A. (2019). Effectiveness of Caregivers’ Yoga Module on Psychological Distress and Mental Well-Being among Caregivers of Patients Admitted to Neurological Rehabilitation Wards of a Tertiary Care Institute, Bengaluru, Karnataka, India. Journal of Neurosciences in Rural Practice, 10, 657–665. https://doi.org/10.1055/s-0039-3399613

Hall, S., Rohatinsky, N., Holtslander, L., & Peacock, S. (2024). The Saskatchewan Caregiver Experience Study: Support Priorities of Caregivers of Older Adults. Canadian Journal of Nursing Research, 56(4), 418-431.

Hicks, N. M., Sellers, S. L., Zhang, J., Sun, N., & Harris, K. (2022). What matters most? Intersectional correlates of caregiver burdens. Journal of Applied Gerontology, 41(9), 2013-2021.

Joag, K., Kalha, J., Pandit, D., Chatterjee, S., Krishnamoorthy, S., Shields-Zeeman, L., & Pathare, S. (2020). Atmiyata, a community-led intervention to address common mental disorders: Study protocol for a stepped wedge cluster randomized controlled trial in rural Gujarat, India. Trials, 21(1). https://doi.org/10.1186/s13063-020-4133-6

Li, L., Sun, N., Wang, H., Fan, C., Li, H., & Yang, S. (2023). The Care Burden and Influencing Factors of Family Caregivers of Older Adults with Dementia. medRxiv, 2023-02.

Ministry of Health and Family Welfare. (n.d.). https://pib.gov.in/PressNoteDetails.aspx?NoteId=153277&ModuleId=3®=3&lang=1

Muñoz‐Cruz, J. C., López‐Martínez, C., Orgeta, V., & Del‐Pino‐Casado, R. (2024). Subjective caregiver burden and coping in family carers of dependent adults and older people: A systematic review and meta‐analysis. Stress and Health, 40(4). https://doi.org/10.1002/smi.3395

Naidu, S. (2021, November 19). GoodFellows, a companionship startup by Shantanu Naidu, brings grandkids-on-demand to reduce loneliness. YourStory. https://yourstory.com/2021/11/goodfellows-companionship-startup-ratan-tata-shantanu-naidu

Nakamoto, I., Murayama, H., Takase, M., Muto, Y., Saito, T., & Tabuchi, T. (2022). ASSOCIATION BETWEEN INCREASED CAREGIVER BURDEN AND MENTAL HEALTH DURING THE COVID-19 PANDEMIC IN JAPAN. Innovation in Aging, 6(Supplement_1), 542. https://doi.org/10.1093/geroni/igac059.2056

Parvizi, M., & Ay, S. (2024). The assessment of care burden and influencing factors on family caregivers for cancer patients. Journal of Clinical Nursing, 33(10), 3923-3932.

Pavarini, S. C. I., Bregola, A. G., Luchesi, B. M., Oliveira, N. A. D., & Ottaviani, A. C. (2023). Sociodemographic, clinical, and psychosocial factors associated with burden in older caregivers: a cross-sectional study. Dementia & Neuropsychologia, 17, e20220030.

Reinwarth, A. C., Petersen, J., Beutel, M. E., Hautzinger, M., & Brähler, E. (2024). Social support in older adults: Validation and norm values of a brief form of the Perceived Social Support Questionnaire (F-SozU K-6). PLoS ONE, 19(3), e0299467. https://doi.org/10.1371/journal.pone.0299467

Schultz, B. E., Corbett, C. F., & Hughes, R. G. (2022). Instrumental support: A conceptual analysis. Nursing Forum, 57(4), 665–670. https://doi.org/10.1111/nuf.12704

Seong, S. J., Kim, I. H., Lim, S., Min, N., Lee, M. J., Han, J. H., Kwon, S., Yoo, K. H., Jo, H. J., Park, K. J., Jo, Y. T., Song, J. Y., & Hwang, J. Y. (2023). Factors Associated with Caregiver Burden of Newly Diagnosed Dementia Patients: A Pilot Study. The Korean Journal of Psychopathology, 27(2), 26–37. https://doi.org/10.36430/kjp.2023.27.2.004

Steinsheim, G., Malmedal, W., Follestad, T., Olsen, B., & Saga, S. (2023). Factors associated with subjective burden among informal caregivers of home-dwelling people with dementia: a cross-sectional study. BMC Geriatrics, 23(1). https://doi.org/10.1186/s12877-023-04358-3

Svec, J., Nemmers, N., & Lee, J. E. (2023). SUPPORT FOR FAMILY CAREGIVERS: WORK STRAIN AND THE IMPACTS OF FORMAL AND INFORMAL SUPPORT. Innovation in Aging, 7(Supplement_1), 143. https://doi.org/10.1093/geroni/igad104.0467

The Hindu Bureau. (2024, October 5). Kudambasree rolls out homecare services in State. The Hindu. https://www.thehindu.com/news/national/kerala/kudambasree-rolls-out-homecare-services-in-state/article68721972.ece

Upasen, R., Saengpanya, W., Awae, W., & Prasitvej, P. (2024). The influence of resilience and social support on mental health of older adults living in community: a cross-sectional study. BMC Psychology, 12(1). https://doi.org/10.1186/s40359-024-01892-6

VandenBos, G. R. (2023). APA Dictionary of Psychology. American Psycho-logical Association.

Villeneuve, K., Beaulieu-Bonneau, S., Hudon, C., Souesme, G., Lévesque, M., Predovan, D., … & Ouellet, M. C. (2023). Subjective and objective burden and psychological distress in care partners of older adults with traumatic brain injury. Rehabilitation Psychology, 68(3), 301.

Yon, Y., Mikton, C. R., Gassoumis, Z. D., & Wilber, K. H. (2017). Elder abuse prevalence in community settings: a systematic review and meta-analysis. The Lancet Global Health, 5(2), e147–e156. https://doi.org/10.1016/s2214-109x(17)30006-2