The Important Role of Family, Formal and Informal Caregivers

In this article...
  • People with disabilities and illnesses may need help caring for themselves. Learn about the role of family, formal and informal caregivers in providing support.
Smiling man and his adult daughter

A spouse with chronic heart failure, a parent with Alzheimer's disease or a neighbor with mobility issues — these are examples of people with medical conditions and disabilities who may struggle to independently care for themselves. This article gives an overview of the role of family, formal and informal caregivers in supporting older adults who need assistance with basic tasks such as getting dressed, preparing meals and taking medication. 

Types of Care Recipients

While caregivers help people of all ages to complete daily activities, the majority assist older adults. According to Statista, the distribution of caregivers in the United States in 2019 was as follows:

  • 52% cared for a sick, ill and/or older adult over the age of 65
  • 23% cared for a sick or ill adult between the ages of 18 and 65
  • 9% cared for a special needs child under the age of 18
  • 7% cared for a special needs adult over the age of 18
  • 5% cared for a sick or ill child under the age of 18

A study by the AARP and the National Alliance for Caregiving found that older adults typically need support because of:

  • Long-term physical conditions (63%)
  • Memory problems, including Alzheimer's or dementia (32%)
  • Emotional or mental health issues (27%)

The Role of Family, Formal and Informal Caregivers

The role of family, formal and informal caregivers can vary greatly depending on individual needs. Some care recipients may get by with an occasional visit to the home by a family member. Others might need around-the-clock care in a skilled nursing facility. 

Medical professionals often use a set of indicators known as Activities of Daily Living (ADLs) to measure a person's ability to care for themselves. This helps ensure care recipients get the right form of support.

Basic ADLs cover fundamental needs and include:

  • Getting out of bed
  • Personal hygiene such as bathing and grooming
  • Dressing
  • Eating and drinking
  • Toileting
  • Mobility 

Instrumental ADLs refer to more complex activities:

  • Housekeeping and home maintenance
  • Paying bills and managing finances
  • Getting groceries and preparing meals
  • Filling prescriptions and taking medication
  • Laundry
  • Running errands
  • Getting to appointments

Types of Caregivers

1. Formal Caregivers

Formal caregivers are usually educated and trained in the field, although the extent and quality of training can vary. They may have formal classroom study and/or on-the-job training.

These caregivers typically choose the profession as a career and are paid for their work. They may find jobs in home health, adult day care centers and residential care facilities such as assisted living and nursing homes.

Examples of formal caregivers include:

  • Health aides
  • Personal care attendants
  • Nursing assistants
  • Licensed practical nurses or licensed vocational nurses
  • Registered nurses

2. Family and Informal Caregivers

Informal caregivers, also known as family caregivers, deliver care because of their relationship to a person. The care recipient may be a spouse, parent, child, relative, friend or neighbor. Informal caregivers typically have no formal training and are unpaid. They provide care in the home, with two out of every five caregivers living with their care recipient.

According to a study by the AARP and National Caregiving Alliance, nearly nine out of 10 informal caregivers caring for an adult are looking after a relative. The survey broke down caregiving relationships as follows:

  • Parent or parent-in-law (50%)
  • Spouse or partner (12%)
  • Friend or neighbor (10%)
  • Grandparent or grandparent-in-law (8%)
  • Adult child (6%)

Stress Caused by Informal Caregiving

By 2024, it's expected that nearly 70 million Americans will be between the ages of 60 and 78, underscoring the essential role of family, formal and informal caregivers in supporting older adults.

Only 11% of older care recipients live in an assisted-living or skilled nursing facility. Most long-term care of older adults is provided by unpaid caregivers in private homes. While informal caregivers often step naturally into this role, helping family members as they age or experience a decline in health, this type of caregiving can become more time-consuming as a relative's needs intensify. 

The average family caregiver spends 24 hours per week assisting a relative, often on top of other responsibilities, such as a full-time job and children. Complex medical conditions can make care even more challenging and create emotional stress for the caregiver.

Support for Family Caregivers

Informal caregivers should know and watch for the signs of caregiver stress. It's important for caregivers to make time for themselves, care for their own health, get support from others and obtain professional help when needed. 

Here are some resources to help family caregivers who are feeling overwhelmed: 

National Institute on Aging