The Caregiving Toolkit: Considerations for America’s Family Caregivers

While November is National Family Caregiver Month, family caregivers across the country and around the globe often devote love, support, and energy year-round to care for one or more family members. In the United States, an estimated 53 million family caregivers or 1 in 5 Americans provide various levels of support or assistance for their care recipients (AARP & National Alliance for Caregiving, 2020). For many of us, conceptualizing the number of caregivers providing this labor of love is daunting given the sheer numbers. However, this number is projected to increase greatly in the coming years and decades as we have an increasing aging population, increased longevity, as well as a greater likelihood of disability and chronic illness (Schulz et al., 2020). For Americans who are not currently serving as a family caregiver, many see this role in the near future. In fact, the Centers of Disease Control and Prevention (2024) reported that 1 in 6 non-caregivers can anticipate becoming a caregiver within two years.

Family caregivers often provide physical, instrumental, advocacy, and financial support in a variety of ways to their loved ones. In addition, family caregivers are often there to listen, to laugh with, and to comfort. Family caregivers may find themselves not only in the routine and everyday moments for their loved ones. They are often in the background, sometimes “invisible” to many of us, scheduling appointments coordinating care, and doing the invisible labor needed to fully provide for the needs of their loved one. In addition, they often are also present in the critical, tender moments—in sickness, in loss, and even in a loved one’s final days and moments.

The role of family caregivers may prove complex and daunting-- with many caregivers juggling a myriad of roles and responsibilities. The needs often change over time based on the evolving needs of care recipients. Caregivers provide support in varied, and often unquantifiable ways, including some of the following ways:

• Attending to physical needs (e.g., Activities of Daily Living - bathing, dressing, grooming),

• Supporting with household chores and financial management,

• Household and care coordination,

• Managing medication,

• Providing emotional support,

• Assisting with transportation, and

• Researching and navigating services, (Marsack-Topolewski & Samuel, 2024; Sherman, 2019).

Whether thinking about family caregiving from a personal and professional standpoint, unique considerations, realities, and resources exist that may be helpful when providing support to a family caregiver and/or their loved ones. There are millions of people that provide family caregiving, but unpaid care is more often provided by women (Stall et al., 2023). Regardless of who is providing the care support, family caregivers are rarely formally trained and often learn on their caregiving journey (Berg et al., 2019). This can pose potential challenges, such as physical injuries and increasing frustration (Owlia et al., 2019). Tailored and specialized training opportunities should be at the forefront of practice to ensure that caregivers have the prerequisite information to provide care that can be delivered safely for both the care recipient and themselves as a caregiver.

While many family caregivers do experience challenges, time demands, and other forms of caregiver burden-- it is important to note the many rewards and benefits of family caregiving. The rewards of caregiving have been discussed by many family caregivers and a caregiver - these relationships are often associated with many benefits, joys, and rewards for both the caregiver and care recipient (Marsack-Topolewski et al., 2021; Murphy et al., 2023; Phillips et al., 2023; Shin et al., 2021; Stanley & Balakrishnan, 2021). With both formal and informal support systems, family caregivers can be provided additional layers of support as they navigate their caregiving journey.

There are many ways that family caregivers could be supported:

• Managing stress and promoting self-care, health and wellness: Family caregivers often indicate that juggling the many roles and responsibilities associated with everyday life and caregiving duties can be daunting. There are a number of opportunities to support clients, friends, and family in their journey to not only care for their loved one, but themselves. Family caregivers may benefit from both the time and opportunity to engage in their own self-care. Often, our family caregivers are aging alongside their care recipients. Family caregivers having both formal (e.g., support groups) and informal (e.g., family, friends, neighbors) support networks that they can rely on offers emotional, information, and practical benefits. Additionally, maintaining their own health and typical daily routines is essential to support one’s self-care. This means that caregivers should be supported in making time for their own medical appointments. Prioritizing sleep, healthy eating, and regular activity and exercise are essential. At times, caregivers may benefit from support in setting realistic goals and boundaries so that they can maintain their own self-care needs while balancing their ability to most effectively care for their loved one.

• Information and training: The type and coinciding needs to provide care varies not only based on the care recipient, but also often over the course of one’s caregiving journey. Depending on the continuum of care needs, clinicians can often provide support in connecting individuals with and/or offer information and training. Clinicians can be mindful not to inundate families with too much information at one time, but rather provide this information in a way that can be easily digestible and integrated in a relevant manner into their own care routines.

• Respite Care: Many caregivers may share or feel the need for a break from what can feel like the ongoing care demands. While it can be hard to find and there is the need to ensure that proper training is provided, respite care can provide families with an ever so needed break. There are a variety of places to search for information on respite care, including the ARCH National Respite Network and Resource Center’s Locator Services.

• Adult Day Services: Family caregivers providing care for adults with disabilities and/or older adults may find support in the daytime care and supervision offered through adult day services. Adult day services can be both enriching and supportive for those attending. In addition, they may provide family members some needed structure for their loved one during the day, while they receive some respite, work, or do other needed daily activities. The National Association of Adult Day Services Association.

• Strengthen caregiving supports and networks - As numbers of both those who will likely need care and those who will become caregivers is projected to increase, a dire need exists to strengthen and build tailored programs, services, and caregiving supports and networks to benefit both caregivers and their loved ones. Social workers, counselors, psychologists, dieticians, nurses, and other health providers may find themselves in unique roles to refine, develop, and strengthen existing options and supports.

In both personal and professional ways each of us may encounter small and perhaps large opportunities to support clients on an individual or familial level in their caregiving journey. The routine and complex care tasks for loved ones often can be shared and lightened in the context of community. As we think about the complexities and countless hours devoted by America’s family caregivers, I am reminded of the words of Helen Keller. She stated, “Alone, we can do so little; together we can do so much.” As we go forward, the connections, community, words of encouragement, and supports provided may make all the difference in supporting both caregivers and their loved ones.

For family caregiving and other relevant resource information, resource information is included below:

Resources

• AARP – Family caregiving information
  • Eldercare Locator information
  • Article: How Providing Caregiving Affects Your Workforce
  • Article: The Huge Financial Toll of Family Caregiving
• Alzheimer's Association – Caregiving information
• Alzheimers.gov – Resources and information for caregivers
  • Article: Tips for Dementia Caregivers
• Caregiver Action Network
• Centers for Disease Control and Prevention
  • Caregiving
  • Disability and Health Information
• Family Caregiver Alliance
• National Alliance for Caregiving
• National Association of Adult Day Services Association
• National Institute on Aging Caregiver's Handbook
• National Institute of Health – Caregiving tips and resources
• Resources from 211
• The John A. Hartford Foundation – Family caregiving information
• VA's Caregiver Support Program
• USAging

Reference List

AARP and National Alliance for Caregiving. Caregiving in the United States 2020. Washington, DC: AARP. May 2020. https://doi.org/10.26419/ppi.00103.001

Berg, K. M., Fortinsky, R. H., & Robison, J. (2019). Family caregivers needed—no training provided. JAMA internal medicine, 179(6), 835-836. https://doi.org/10.1001/jamainternmed.2018.8689

Centers for Disease Control and Prevention. (2024). Dementia Caregiving as a Public Health Strategy. Retrieved from https://www.cdc.gov/caregiving/php/public-health-strategy/index.html#cdcreference_1

Marsack‐Topolewski, C. N., Perry, T. E., & Chan, K. T. (2021). “I'm Glad She Chose Me as Her Parent”: Rewards of Caregiving for Adults With Autism. Family Relations, 70(5), 1465-1476. https://doi.org/10.1111/fare.12515

Marsack-Topolewski, C. N., & Samuel, P. S. (2024). Experiences of parental caregivers of adults with autism in navigating the world of employment. Journal of Autism and Developmental Disorders, 1-11. https://doi.org/10.1177/1044389419881273

Murphy, K. A., Corveleyn, A. E., Park, E. R., & Irwin, K. E. (2023). Challenges, rewards, and lessons learned from family and community caregivers of individuals with serious mental illness and cancer. Supportive Care in Cancer, 31(8), 492.

Owlia, M., Ng, C., Ledda, K., Kamachi, M., Longfield, A., & Dutta, T. (2019). Preventing back injury in caregivers using real-time posture-based feedback. In Proceedings of the 20th Congress of the International Ergonomics Association (IEA 2018) Volume III: Musculoskeletal Disorders 20 (pp. 750-758). Springer International Publishing.

Phillips, R., Durkin, M., Engward, H., Cable, G., & Iancu, M. (2023). The impact of caring for family members with mental illnesses on the caregiver: a scoping review. Health Promotion International, 38(3), daac049. https://doi.org/10.1093/heapro/daac049

Schulz, R., Beach, S. R., Czaja, S. J., Martire, L. M., & Monin, J. K. (2020). Family caregiving for older adults. Annual Review of Psychology, 71(1), 635-659. https://doi.org/10.1146/annurev-psych-010419-050754

Sherman, D. W. (2019, April). A review of the complex role of family caregivers as health team members and second-order patients. In Healthcare (Vol. 7, No. 2, p. 63). MDPI. https://doi.org/10.3390/healthcare7020063

Shin, J. Y., Chaar, D., Davis, C., Choi, S. W., & Lee, H. R. (2021). Every cloud has a silver lining: Exploring experiential knowledge and assets of family caregivers. Proceedings of the ACM on Human-Computer Interaction, 5(CSCW2), 1-25. https://doi.org/10.1145/3479560

Stall, N. M., Shah, N. R., & Bhushan, D. (2023, June). Unpaid family caregiving—the next frontier of gender equity in a postpandemic future. In JAMA Health Forum (Vol. 4, No. 6, pp. e231310-e231310). American Medical Association. https://doi.org/10.1001/jamahealthforum.2023.1310

Stanley, S., & Balakrishnan, S. (2021). Informal caregiving in schizophrenia: correlates and predictors of perceived rewards. Social Work in Mental Health, 19(3), 230-247. https://doi.org/10.1080/15332985.2021.1904089