Living with aging caregivers
The global population aged 65 and older reach approximately 830 million in 2024 (according to the U.N.), and the demographic is projected to 1.5 billion by 2050. (1 in 6 people in the U.S. 65 are older in 2024, and in Florida 18.3% 65 and older.) The exponential rate of population aging is mirrored by a rapid increase in demand for long-term care; according to the World Health Organization (WHO), approximately 2 in 3 people who reach older age will require long-term support for activities of daily living. Long-term care systems globally are struggling to meet these increasing needs; according to a recent report by the UN, only about 33% of reporting countries have sufficient resources to provide long-term care that is integrated into existing health and social care systems.
The inadequacy of long-term care systems places the growing burden of care on informal caregivers, most commonly family and partners, who play a critical role in not only maintaining the health and functioning of care recipients but also as navigators of complex health-care systems to ensure timely access to services and continuity of care. In OECD countries about 60% of older people exclusively receive care from informal caregivers. With the growing reliance on informal caregivers, support systems are urgently needed. (OECD – Organization for Economic Co-operation and Development – is an international organization that works to build bitter policies for better lives. It has 38 members, including US, UK, and European Union and others,)
Caregivers are often older adults themselves and might have chronic conditions, frailty, or age-related disabilities. The physical demands of caregiving exacerbate these preexisting health conditions, resulting in greater physical strain, distress, and poorer self-rated health, compared to young caregivers. A recent study found that older adults transitioning into informal caregiving experienced a sharper decline in physical health than non-caregivers of comparable age. Older caregivers caring for individuals who require intensive caregiving are particularly vulnerable. For example, the burden of older caregivers of people living with dementia has been shown to be higher if care recipients exhibit apathy, irritability and increased deficits in instrumental activities of daily living.
A gender imbalance is evident in informal caregiving, such that caregivers are often middle-aged and older women, particularly in lower-and-middle income communities. Women are also more likely to provide caregiving for complex conditions such as dementia. Compared to men in caregiving roles, women caregivers report higher levels of depressive symptoms and functional decline. Additionally, caregiving burden can also negatively impact health-seeking behavior, including preventative care.
Considering the adverse effects of caregiving, support is imperative for older caregivers. A critical first step in establishing this support is greater investment in long-term care systems, particularly in resource-limited settings. Though paramount, these extensive transformations in long-term care will not be immediate. Therefore, older caregivers must urgently be afforded direct support, such as training to bolster understanding of disease symptoms exhibited by care recipients and support for managing caregiving-related burden and distress. Importantly, policies and interventions must be developed under a gender lens to combat the gender disparities underpinning informal long-term care. The preferences and views of caregivers must also gain visibility; caregivers often feel overlooked and undervalued, and report being excluded from patient care planning. As caregivers are intimately involved in the care experience, it is critical that their opinions be recognized and incorporated into clinical decision-making. Finally, to better understand the distinct health challenges and needs of older caregivers and to inform interventions, more research is needed.
Population aging will see not only a continued increase in the number of older people requiring care but also a commensurate increase in the older population shouldering the provision of this care. It is time that we alleviate this burden and care for the shadow workforce of older caregivers. All older people, whether a care recipient or caregiver, deserve to live in good health