Unpaid Caregivers in the US: Definition, Problems & Resources

Updated

Certified Care Manager, Aging Life Care Professional, and National Master Guardian Emeritus

If you are a family caregiver, chances are you are unpaid. Family caregiving is the foundation of caregiving in the US, and without unpaid caregivers, there would be no other option for people who need hands-on support and care.

Unpaid caregivers allow spouses, partners, parents, grandparents, and others to remain at home, where most people state they want to be. And for those in assisted living or other senior care? They too often rely on unpaid caregivers to fill the gaps in care.

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The challenge, problems, and health and financial consequences for unpaid caregivers are enormous. The Family Caregiver Alliance estimates that “10 million caregivers aged 50+ who care for their parents lose an estimated $3 trillion in wages, pensions, retirement funds, and benefits.” And that’s not all. When caregivers reduce or leave their employment, it can be challenging and sometimes impossible to re-enter the workforce.

Finding and accessing caregiver resources is challenging because it is fragmented. There is no national caregiving program or place to go for advice or support. But we do have some resources we hope will help you along the way.

What’s an Unpaid Family Caregiver?

An unpaid family caregiver, sometimes called an informal caregiver, is someone who is not compensated financially for the care they give another person. You could be an unpaid family caregiver who is performing small tasks like picking up groceries prescriptions or taking a loved one to the doctor.

Or, you could be a caregiver who performs complex medical tasks such as catheter and wound care and help bathing, dressing, and toileting. And then there is everything in between. Some days may be hectic, and others where you have some breathing room. Caregivers don’t fit one mold—they are diverse in age, and caregiving duties vary widely and are constantly changing.

How Many Unpaid Caregivers Are There in the US?

Estimates are that there were over 53 million unpaid caregivers in the year 2020. 

AARP and the Family Caregiver Alliance report that the number of caregivers has climbed from 18 percent of adults in 2015 to more than 21 percent in 2020. And the increase is not just with baby boomers. We see increases in caregiving among Gen Z, Millennials, and Gen X. Caregivers are getting younger and younger. 

Factors that impact the increase in caregiving are complicated, but the pandemic didn’t help. Caregivers who relied on social services and other resources for their loved ones had to step up their caregiving duties to fill the void. Many families removed their loved ones from high-risk senior living communities to live with them or in apartments where care needs have to be provided by someone—usually family.

Add to that the increasing numbers of people aging in the US, which places a burden on families to provide care if they can’t afford senior living or home care.

What Unique Problems Do Unpaid Caregivers Face?

There are so many unique problems for unpaid caregivers that it is hard to know where to start. Consider all of the issues of any random job or situation—stress, grief, skill-building under pressure, time management, relationship strain, and fatigue. You get it all with caregiving. And when caregiving ceases, not all of the problems of caregiving ends. The emotional effects of putting your life back together can be challenging.

Financial strain

The financial strain on caregivers is hard to measure because it is so vast. The Family Caregiver Alliance estimates that female caregivers are disproportionately affected by the financial impact of caregiving by giving up employment altogether and losing work-related benefits.

Getting back into the workforce isn’t easy either. Also, caregiving costs can include supplies, medical equipment, and accessibility additions. The financial contribution of unpaid caregivers is estimated to be in the billions of dollars.

Work problems

Even for those caregivers that continue to work, it places a strain on their lives. Caregiver absenteeism costs the economy an estimated $25.2 Billion in lost productivity. According to the Family Caregiver Alliance report, 70% of working caregivers state they have work-related stress due to their caregiving.

Unfortunately, there is no uniform national family leave policy for caregivers. More employers are beginning to understand the value of supporting their employees who are caregivers, but we have a long way to go.

Stress

Caregivers have stress which can lead to burnout. As a caregiver, you know first hand the strain of managing your loved one’s care, family, job, and friends. It can seem as though there are not enough hours in the day, and before you know it, your health is suffering. Common signs of caregiver stress are:

  • Problems with sleeping such as either getting too much or too little
  • The excessive use of alcohol or other drugs to alleviate stress
  • Poor health habits like not getting enough exercise or avoiding medical checkups
  • Loss of interest in activities you used to enjoy
  • Lack of motivation and energy

Mental health problems

Mental health problems and caregiving often go hand in hand. Caregivers are at greater risk of depression and anxiety. And mental health problems contribute to a decline in physical health. In addition, caregiving can elicit feelings of grief and loss. If you are caring for someone with dementia, your chances of mental health problems are even greater. 

Performing complex medical tasks is not unusual for caregivers today. Typically there is no training on how to take care of someone, leading a caregiver to feel overwhelmed and ill-prepared. 

Social isolation

Caregiving is a uniquely solitary activity that is so time-intensive that often there is not enough time to socialize with friends and family. Over time this can lead to increased feelings of loneliness and isolation. Everyone needs connection and support, and there is no better time for that support than when you are a caregiver, but that support often erodes. 

Relationship problems

Not every caregiver will experience relationship problems, but many do. Holding your other family relationships together while coping with the stress of caregiving can be tough. The economic burden of caregiving could take a toll on your financial stability, creating conflict.  Don’t hesitate to seek out couples counseling if this is an issue for you and your spouse or partner.  

Resources for Unpaid Caregivers

Despite all of the risks and problems of caregiving, you can be a healthy, well-adjusted caregiver if you seek out caregiver resources and support. At the end of the day, it is up to you to find the time and make an effort to be healthier and happier. You can become a better, healthier caregiver with our suggestions.

Caregiver blogs and websites

If you feel lost, isolated, and overwhelmed, you are not alone. In fact, there are hundreds of caregiver blogs and websites to offer support, training, and resources. Need help finding a solution to a problem? Chances are someone else has faced that same problem, and caregiver support groups allow you to talk with other caregivers. Websites offer educational material on almost any medical issue your loved one has. 

Counseling

Counseling is at the heart of treatment for depression and anxiety. A therapist with training in working with caregivers can help you with healthy coping strategies, conflict resolution, time management, and self-care activities. Many therapists have a remote option for counseling which can be especially helpful for busy caregivers who cannot leave their loved one alone.

Training videos

Training videos can give you the reassurance you need to perform your caregiving duties with confidence. AARP and Caregiver Action Network are two organizations that help you learn a range of caregiving tasks. 

Relaxation apps

Need instruction on how to relax? There is an app for that. Relaxation apps can teach you mindfulness, start you on meditation training, or generate soothing music. And speaking of music, putting your headphones in and connecting with a music platform can reduce your stress.

Job sites

If you have left or want to change your job, the employment situation has become competitive. After having been out of the professional field for a while, you may feel less confident in your resume and job search skills. Linkedin, Indeed, Upwork, and numerous other sites can help you craft a resume and search for a new job.

Caregiver apps

Feeling disorganized and distressed by all of your caregiving and other responsibilities? Caregiver apps can help you do everything, from keeping notes about your loved one and sharing information with other family members to managing your time more effectively. Use Cake’s free planning tool to upload important documents and share them with authorized family members. 

The Alzheimer’s Association

Chances are you are caring for someone with Alzheimer’s or dementia. The Alzheimer’s Association is the best place to get information and education about what to expect in caring for someone with this devastating disease. The Alzheimer’s Association website will connect you to resources in your local area.

AARP

AARP has a wealth of information for caregivers, and it is free. AARP partners with The National Alliance on Caregiving to produce a comprehensive report on caregiving in America. 

Eldercare Locator

Eldercare Locator is the best place to begin your search for local and federal public resources. Your area agency on aging will also have caregiver resources such as meals on wheels, senior transportation, and in-home respite programs.

Unpaid Caregivers in the US: Definition, Problems & Resources

As an unpaid caregiver, you have a minefield of obstacles and challenges, but there are solutions. Connect with others, become more educated, focus on self-care, and you will be able to continue to provide excellent, compassionate care to your loved one.

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