What do we know about caregivers?

illustration of Statue of Liberty
An estimated 8.4 million Americans are unpaid caregivers for adults with mental health issues; roughly the same as the population of New York City

graphic with arrow pointing to two people with 11% in heart; then another arrow pointing to one person with 45% in heart; and another arrow pointing to one person with 14% in heart88% of caregivers for adults with mental illness are family members

  • 45% are parents
  • 14% are adult children
  • 11% are spouses

illustration of hourglass with sand almost gonePeople with mental illnesses receive care for nine years on average, as opposed to 4 years for people with other illnesses.

pie chart with 3 quarters highlightedThree quarters of caregivers reported that they were impacted or highly impacted in their involvement in activities (work, school, family, friends, religion, etc.) by their caregiving role

illustration of churchReligion was the least impacted area

illustration of 3 people and illustration of party horn next to each otherFriendships and recreation were the most impacted areas

What have we learned about caregivers from Screening?

Half of all screens taken by caregivers at mhascreening.org were for depression.

Of caregivers who took a screen at mhascreening.org

illustration of 8 people wearing red and 2 wearing blue

over 80% were women

pie chart with caregiver ages - 11-17 is 17.3%; 18-24 is 20%; 25-34 is 23.9%; 35-44 is 16.5%; 45-54 is 12.5%; 55-64 is 7.7%; 65+ is 2.1%

Nearly 2/3 (61.21%) were under age 34

Why is community inclusion important?

Community inclusion means that all people, regardless of their health care needs, have the right to: be respected as members of their communities, participate in recreational activities in neighborhood settings, work at jobs in the community that pay a competitive wage and use their skills and abilities to the fullest, and pursue educational opportunities with their peers.

Inclusion in the community allows a person to serve a role and feel that they have a sense of purpose and belong to something bigger than themselves. Part of what can make caregiving difficult is a lack of community inclusion for people with mental illnesses.

Two-thirds of caregivers report that the person they care for has received some support to increase their participation in community life.

pie chart with 2 thirds highlighted in blueContact your local MHA affiliate to get information about support in your area 


45% of people with mental illness receiving care live in the home of the caregiver, yet only 1/3 of caregivers reported that their loved one was involved or very involved with their choice of housing.

illustration of red house

Find housing resources for people with mental health conditions.


Only 20% of caregivers reported that their loved ones were involved in competitive employment.

illustration of computer monitor and briefcase on desk

Learn more about meaningful work, its role in the recovery process, and supported employment


For more information, read the full report: Community Inclusion from the Perspective of Caregivers

Sources

Caregivers of Adults With Mental Illness (2016). National Alliance for Caregiving. http://www.caregiving.org/mentalhealth/

U.S. Census Bureau. http://www.census.gov/quickfacts/table/PST045215/3651000

On Pins & Needles: Caregivers of Adults with Mental Illness (Rep.). (2016, February). National Alliance for Caregiving, in partnership with Mental Health America, National Alliance on Mental Illness. http://www.caregiving.org/wp-content/uploads/2016/02/NAC_Mental_Illness_Study_2016_FINAL_WEB.pdf

Plotnick, D. and Kennedy, J. (2016). Community Inclusion from the Perspective of Caregivers of People with Psychiatric Disabilities.  Mental Health America, Alexandria, VA. https://mhanational.org/wp-content/uploads/2025/04/Community-Inclusion-from-the-Perspective-of-Caregivers-FINAL.pdf

Institute for Community Inclusion at UMass Boston. http://www.communityinclusion.org/article.php?article_id=213

Proprietary data from mhascreening.org.