As care providers, we realize that disease and disability affect more than just the patient who is no longer able to fully care for themselves. Caregiving exists in as many permutations as there are families and friendships, and is dictated by the cultural framework of those involved. However, regardless of nationality or cultural perspective, caregiving for a loved one often creates a maelstrom of competing emotions. In cases of chronic disability, terminal illness, or advancing geriatric conditions – the demands for care increase with time, as do the psychological and emotional burdens of the carer – framing caregiving as uniquely different from childrearing or temporarily assisting persons suffering from acute disease or disability.
Whether the caregiving role is entered into voluntarily or reluctantly, driven by a sense of duty or the desire to repay, it is most often undertaken by non-professional caregivers. This means that most caregivers learn as they go. Learning to navigate complex conditions, health systems, financial challenges, community and government assistance programs, and make life-critical decisions for a loved one. Caregiving, particularly for a parent or spouse, can upend family dynamics as roles and demands constantly shift and change; the dependent struggles with a loss of autonomy while the caregiver sacrifices their independence, often while experiencing some form of grief. Caregivers often report happiness with their decision to step in and accommodate, advocate, facilitate, and preserve the dignity of loved ones struggling with disease or infirmity, but the physical and psychological demands can take a serious toll on the health of the caregiver.
What is caregiving, who is a caregiver?
Caregiving defies specific definition, but the term generally refers to unpaid assistance given to adults who cannot perform the “activities of daily living” (ADLS), whether that be short-term, long term, elder care, or end-of-life. Care recipients are most often persons suffering from impairments related to old age, disease, disability, or psychological disorders. Caregiver tasks can range from providing occasional financial assistance, driving to appointments, assisting with household maintenance and chores, to help with personal grooming, administration of medication, and in some cases, comprehensive round-the-clock care.
While there are those who are caregivers by profession, 75% of all individuals needing caregiving rely on unpaid help – typically a family member or close friend. In the United States, 44 million adults provide unpaid support to the elderly and adults with disabilities in the community, approximately half of which are unable to balance the demands of a full time job with the heavy responsibilities of dependent care.
Worldwide, two-thirds of caregivers are women, typically a wife or daughter. The value provided to the recipient and their families is truly unquantifiable; those receiving dependent care often live longer and report greater life satisfaction than their counterparts without caregiver support. The economic value of their unpaid contribution is upwards of $450 billion, or more than double the economic impact of the Nursing Home and Home Health Care industries combined.
The need for caregivers will only continue to grow as development, technological advances, and modern medicine are keeping people alive longer. As of 2015, there are 125 million people in the world over 85, and approximately 900 million over 60. By 2050, the number of people aged 60 or older will explode to 2 billion, over one-fifth of the world’s population. Unfortunately, the prevalence of chronic disease such as diabetes, heart disease, and some cancers, is rising as well – increasing the odds that a longer life doesn’t necessarily mean a healthier one. In countries with a life expectancy over 70, individuals spend almost 8 years of their lives with disabilities. A combination of disabilities associated with chronic disease and those associated with aging, such as vision and hearing loss, joint pain, depression, and dementia, has not only increased the amount of time the elderly require care, but also the complexity.
The caregiver burden is larger than just the growing demographic of elderly. Disability, mental and degenerative diseases, and cancers can create scenarios where round-the-clock or long-term dependent care is required. Worldwide, it’s estimated that between 110 million and 190 million people suffer from significant disability, and millions more from chronic mental illness such as schizophrenia, and degenerative diseases like ALS or Multiple Sclerosis. The world relies on caregivers.