Spousal Caregiving at a Glance
According to the 2020 Caregiving in the U.S. report produced by National Alliance of Caregiving and AARP, there are 47.9 million caregivers of adults 18 and older in the United States. Care recipients may be a parent, child, sibling, spouse/partner, or friend - 12% of those surveyed are caring for a spouse or partner (5.7 million spousal or partner caregivers).
Across all caregivers, NAC and AARP report that 29% have been caregivers for more than 5 years (14% for more than 10 years). Spousal care recipients are 61.5 years old on average. Spousal caregiving tends to be higher-intensity than other types of caregiving (more medical and nursing tasks, less sense of control over caregiving decisions, more solo caregiving), and 66% of spousal caregivers provide care without any unpaid or paid help (versus 29% for other types of caregivers).
The strain of caring for a chronically ill or disabled spouse or partner is undeniable - in 2020, the proportion of spousal caregivers reporting their health was "excellent" or "very good" was only 32%, and that reflected a decline from NAC/AARP's 2015 report from 45%. As people with chronic illness or disability live longer with more complex medical situations, caregivers often pay a steep price by providing the care their loved one desires or needs.
The nature of the relationship changes and losses due to caregiving are different for spouses and partners than for other caregivers - the transition to caregiver/patient roles often includes the loss of a singular intimate relationship and its companionship. The financial losses can be different too - often the patient AND the caregiver must give up paid employment (at the same time that expenses increase due to medical needs). Spousal caregiving impacts the decision to have children, the way children are raised, and where and how one lives and retires. There are few areas of life that are left untouched by the caregiver/patient role in these relationships.
WSA's mission is to provide resources to spousal caregivers to help them manage their situations a little more easily.
WSA Membership Statistics
WSA has approximately 425 members (both Supporting and Digital) who are or were caregivers or partners to an ill or disabled partner or spouse as of Spring 2021. WSA's active Facebook support group includes 3,100 members.
Research on Caregiving
RAISE Family Caregivers Act - Initial Report to Congress (2021)
AARP and National Alliance for Caregiving report - Caregiving in the U.S. (2020)
AARP Public Policy Institute and United Hospital Fund - Family Caregivers Providing Complex Chronic Care to Their Spouses (2014)
AARP Policy Institute report - Valuing the Invaluable: 2011 Update: The Growing Contributions and Costs of Family Caregiving (2011)
Caregiver.com online study - Family Caregivers Face Major Financial Burdens, Increased Stress, and Work Struggles (2011)