As the population ages, the number of people affected by Alzheimer’s disease and other forms of dementia continues to rise. In turn, families increasingly find themselves providing unpaid care to loved ones with cognitive impairments. This caregiving role, though essential, comes with hidden personal, financial, and societal costs that can be substantial. In fact, a new study reveals that family caregivers of loved ones with dementia, if they were paid for their services, would be making six figures.
The Scope of Unpaid Family Caregiving
Nearly 7 million Americans aged 65 and older are living with Alzheimer’s, a figure projected to reach nearly 14 million by 2060 if trends continue. Many families shoulder the responsibility of care, as residential facilities and formal caregiving options can be financially prohibitive. In 2023, it was estimated that around 11 million Americans were providing unpaid care for family members with dementia, contributing an estimated 18.4 billion hours of care annually. The estimated value of this unpaid care is $346.6 billion.
Unpaid family caregivers often provide a wide range of support for their loved ones with dementia. This may include assistance with daily activities such as bathing, dressing, and eating, as well as managing medications and medical appointments. They also may offer emotional support, companionship, and help with household tasks, ensuring their loved ones maintain a sense of dignity and comfort in their daily lives.
Caring for a loved one with dementia can be particularly stressful. Caregivers often experience emotional strain from witnessing their loved one’s decline, leading to feelings of sadness and helplessness. The physical demands of caregiving can result in exhaustion, while the constant need for vigilance can create anxiety. Balancing caregiving responsibilities with their personal life can further contribute to feelings of isolation and burnout.
The Costs of Dementia Care
Unpaid caregivers often face financial challenges as they balance caregiving responsibilities with their own employment and personal financial stability. Some key financial costs include:
Lost Income and Job Disruption: Many caregivers reduce their work hours, take leaves of absence, or even quit their jobs to care for loved ones. This reduction in income can be significant, especially for those in their prime earning years. Caregivers also lose out on career advancement opportunities, retirement benefits, and Social Security contributions, which can have long-term implications for their financial well-being.
Out-of-Pocket Expenses: Caregivers frequently cover out-of-pocket costs associated with their loved one’s care. These expenses include home modifications, transportation, medical supplies, and other caregiving necessities. According to the AARP, caregivers spend an average of $7,200 annually on caregiving expenses, a figure that can climb higher for those supporting someone with dementia due to the progressive and intensive nature of the care required.
Health Care Costs: Caring for a loved one with dementia can take a toll on the caregiver’s own health and quality of life, leading to increased health care expenses. Studies have shown that caregivers of people with dementia often experience higher rates of depression, anxiety, and chronic conditions, such as heart disease. These health issues can require costly medical treatments and medications.
How Much Would a Family Caregiver Make?
What if family and friend caregivers were paid for the caregiving services they provide to their loved ones with dementia? According to a recent study conducted by Salary.com and Otsuka America Pharmaceutical, Inc., a caregiver would earn a six-figure salary for the daily help they provide. In fact, the approximate salary would be $114,000, on average.
The two companies created a calculator for caregivers to estimate how much they would make if they were paid for their time and effort. Check out the interactive Family Caregiver Calculator.
The Economic Effects on Society
The economic cost of unpaid dementia caregiving extends beyond individual families to society as a whole. The Alzheimer’s Association estimates that the economic value of unpaid caregiving for individuals with dementia is almost $340 billion annually. If caregivers were unable to provide this support, the health care system would face immense pressure to meet these needs, potentially straining public resources.
Getting Support and Planning Ahead
Unpaid caregiving for older adults with Alzheimer’s and other forms of dementia is a deeply meaningful yet challenging responsibility. Thankfully, there are resources for these caregivers.
Family caregivers of individuals with dementia can access a variety of resources designed to provide support, education, and respite. Here are some key resources available to help them navigate this challenging journey:
Support Groups. Many organizations, including the Alzheimer’s Association, offer support groups where caregivers can connect with others facing similar challenges. These groups provide a safe space to share experiences, gain emotional support, and learn coping strategies.
Educational Programs. Workshops and seminars are often available to educate caregivers about dementia, its progression, and effective caregiving techniques. Understanding the disease can empower caregivers and help them manage their own loved ones’ needs more effectively.
Respite Care Services. Caregiving can be physically and emotionally exhausting. Respite care services offer temporary relief by providing professional caregivers to take over duties for a short period. This allows family caregivers to rest and recharge, which is essential for their well-being.
Online Resources. Numerous websites and online forms provide valuable information, tips, and community support. These often offer articles, videos, and tools to help caregivers find the information they need at their convenience.
Financial Assistance Programs. Some organizations offer financial assistance or guidance on navigating insurance and government benefits. Understanding available resources can help alleviate some of the financial burdens associated with caregiving.
Home Health Care Services. For families needing additional help, home health care services can provide skilled nursing, therapy, and personal care. These services can be tailored to meet the specific needs of an individual with dementia, allowing caregivers to focus on emotional support.
Legal and Financial Planning Resources. Caregivers may benefit from consulting with professionals who specialize in elder law and financial planning. These experts can help families navigate issues such as power of attorney, guardianship, and long-term care planning.
By utilizing these resources, family caregivers can find the support they need to manage their responsibilities more effectively, ensuring both their well-being and that of their loved ones. Caregivers need to remember that they are not alone, and that help is available.
The Centers for Medicare & Medicaid Services recently launched a nationwide test program called Guiding an Improved Dementia Experience (GUIDE) Model. This pilot program seeks to support individuals living with dementia and their family caregivers. It allows eligible patients with Original Medicare to consult with a health care provider participating in the model. A 24/7 help line is also available.
For help with planning for long-term care services and other elder-care needs, contact an experienced elder law planning attorney near you. They will guide you through the options available to meet your unique needs and can help you plan for the future.
For additional reading on topics related to family caregiving, check out the following articles:
Becoming a Family Caregiver for an Ailing Loved One
Getting Paid as a Family Caregiver Through Medicaid
Are You a Family Caregiver? New Bill Seeks to Lower Costs
Caregiver Contracts: How to Pay a Family Member for Care