For years, I watched my mother care for others. As a young woman, she nursed her mother, who had multiple sclerosis. After that, she nursed my father through cancer. And not long after he passed, she nursed her father through dementia, and most recently a sister through breast cancer. While she sees this as a labor of love, and she would not have done things differently, it did take a lot out of her, mainly mentally and emotionally. She faced many challenges that only other family caregivers could understand and often felt isolated and unsupported in her journey.
Caregiving is a part of life that could affect anyone at some point, whether they are giving or receiving care. In the US, over 53 million people provide unpaid care for aging relatives or family members with disabilities. This unpaid work is valued at around $600 billion every year and helps disabled people stay in their homes and communities. However, many families take on this role because professional care is too expensive or hard to access. Medicaid waiting lists are long, and private care costs are high. Family caregivers are often left to manage difficult tasks, including medical care, without enough training or support.
What is the difference between caregiving and support?
A caregiver is anyone who provides support to others in their daily living. Anyone who provides unpaid support would be called a family (or informal) caregiver. The label “family caregiver” can be a bit misleading, because they are not always related to the person they care for but often take on the role because of a personal relationship either to the person or to another family member. Usually, they are family members, friends, or neighbors.
Formal caregivers are paid professionals who provide care either at home or in places like day care centers, nursing homes, or long-term care facilities.
What does a caregiver do?
Caregivers help others in need by doing everyday tasks like cooking and bathing or assisting with simple nursing needs like giving medication. More than half of family caregivers say they don’t have a choice, with many believing it’s their personal responsibility because no one else can do it, or because insurance won’t cover professional help. Some caregivers feel pressured by the person they’re taking care of, while others may feel pushed by family members.
Family caregiving in the USA
Around 53 million adults in the U.S. take care of older family members, friends, or neighbors without getting paid. This means about one in five Americans acts as a caregiver.
And as the population gets older, more people will be likely to need family caregivers to help take care of them.
Caregiving statistics in the USA
- Approximately 39.8 million caregivers, or 16.6% of the U.S. population, provide support to adults with disabilities or illnesses. 15.7 million of those assist someone living with Alzheimer’s disease or other forms of dementia.
- According to the most recent statistics coming from the American Association of Retired Persons (AARP), a nonprofit organization that advocates for issues like Medicare, Social Security, and health insurance access for the +50 age group, “the unpaid work provided by family caregivers is valued at an estimated $600 billion. This is more than all out-of-pocket healthcare spending in the U.S. in 2021.”
- Nearly 60 percent of caregivers assist with medical or nursing tasks.
- Typical caregiver responsibilities include transportation, shopping, housework, and meal preparation
- The AARP survey found that the most common reasons older adults require unpaid care are:
- Old age (16 %)
- Mobility issues (12 %)
- Alzheimer’s/dementia (11 %)
- Cancer (6 %)
- Mental illness (5 %).
- A survey conducted by Senior Living, a respected website dedicated to all aspects of senior living, showed that:
- Around 59% of people providing care are women
- 43% of caregivers are the sole providers of care
- Sole providers typically spend 20 hours per week on caregiving duties
- Nearly 60 percent of care
- More than half of family caregivers work full-time jobs, which requires them to balance their caregiving and private lives.
- Nearly half of caregivers receive no formal support, such as financial aid, counseling, or respite care, despite
- 88% of all caregivers ay they need more help.
Time and Commitment
On average, caregivers spend about:
- 13 days a month handling chores like shopping, cooking, cleaning, laundry, transportation, and giving medication.
- Six days a month helping with basic needs like feeding, dressing, bathing, walking, and using the bathroom.
- 13 hours a month finding care services, learning about illnesses, scheduling doctor visits, or handling finances.
- Caregivers who look after family members with dementia spend an average of 9 hours a day helping them.
- Caregivers who live with the person they care for spend an average of 40.5 hours a week providing support. Those caring for a spouse or partner dedicate about 44.6 hours weekly, while caregivers of children under 18 spend around 29.7 hours each week on caregiving tasks.
- Caregiving often lasts for significant periods of time. On average, caregivers spend about 4 years in their role. Only 30% of caregivers provide care for less than a year, while 24% care for someone for more than 5 years.
- About 15% of caregivers continue their role for 10 years or more, with those providing higher levels of care being twice as likely to have been caregivers for a decade or longer.
Challenges of family caregiving
Caring for others can take a significant toll on people in many ways. About 72% of caregivers deal with serious emotional stress, and 43% have trouble sleeping. Around 36% show signs of depression.
Balancing work and caregiving is also a challenge, with 53% of caregivers working full-time jobs, making it hard to manage both responsibilities. Women tend to struggle more with stress and depression, while men often feel more financial pressure.
The biggest needs caregivers have include financial assistance, short-term breaks from caregiving (respite care), and better access to helpful services.
Emotional challenges
Caregivers often face a lot of psychological challenges. They might feel guilty if they think they aren’t doing enough or if they take a break for themselves. Sometimes, they may even feel angry or frustrated. As the health of the person they care for changes, it can create a cycle of stress and worry that is hard to escape. This problem can be made even more acute when there are close emotional ties between the caregiver and the dependent, as we described here in the case of a devoted child caring for her parent who had slipped into dementia.
Physical challenges
Caregiving can be more physically challenging than people realize. Caregivers often do tasks like cleaning, cooking, or making sure the person they care for is comfortable. However, if the person has trouble moving, the caregiver might have to help them get out of bed, use the bathroom, or get into a vehicle. Over time, these tasks can cause physical stress, fatigue, and even health problems. Caregivers are more likely to face serious health issues like depression or cancer and have a higher risk of dying earlier than those who aren’t caregivers.
Financial concerns
Caregivers often struggle with money. They take care of loved ones without getting paid and usually have to cover extra costs for that care. Things get even harder if they need to work fewer hours or leave their jobs to focus on caregiving.
Isolation
Caregiving can often feel lonely. The responsibilities and time involved can make it hard for caregivers to keep up with their social lives, leaving them feeling isolated. Caregivers also often face challenges because their work isn’t always recognized or appreciated by society. People don’t always view caregiving as a real job, which makes it harder for caregivers to get the help, resources, and breaks they need.
Balancing act
Caregivers who care for both their own children and their aging parents face double the responsibility. They have to meet the needs of two generations while also managing their jobs, whether they work from home or commute. This makes life even more complicated since many rely on their jobs for financial stability. Balancing work, family, and caregiving is a tough challenge they deal with every day.
Resources available for family caregivers
Looking back over the years that my mother provided care for others fills me with a sense of pride at how much of a resilient and self sacrificing woman she is, but also a sense of sadness to see someone who lost a lot of themselves and sacrificed a huge portion of their own lives in the service of others. The challenges she faced appear to be typical of many who take on this role, and my wish is that she had had some support over the years from others who “got it”. This is why I encourage any family caregivers to do what they can to feel supported and to take care of themselves too.
Family caregivers have access to helpful resources like the Eldercare Locator, Caregiver Action Network, Medicare and Medicaid programs, and VA caregiver support. These programs provide financial help, counseling, training, and breaks for caregivers who need support.
FAQs
Why is caregiving so hard?
Taking care of a loved one can feel like a full-time job and may affect a person’s health, work, and overall balance in life. It can cause feelings of stress, frustration, or even resentment, making the relationship feel more like a responsibility than a personal connection.
How can I be the best caregiver?
While it will vary on a case-by-case basis, good caregivers understand how important it is to respect what the person is still able to do. Instead of dwelling on what the person they are caring for can’t do anymore, they focus on the present. They might look at old photos, listen to music together, cook a favorite meal, or simply remember that the person being cared for wasn’t always unwell.
When to stop caregiving?
Feeling physically worn out, dealing with health problems, or struggling to provide proper care are clear signs that someone may need help. Emotional stress, feeling overwhelmed, and a noticeable drop in overall well-being also show it might be time to rethink their caregiving responsibilities.
