A Look At Young Adult Caregivers
Young Adult Caregivers
The National Alliance for Caregiving (2009) reported that there were at least 9.2 million young adult caregivers aged 18 to 34 who provided unpaid care for an adult or a child with a medical, behavioral, other condition, or disability. Based on U.S. Census Bureau Population Division’s (2014) estimate of young adults (20 to 39 years), there is an estimated 10.8% of the U.S. young adult population are young adult caregivers of adults and/or children.
Developmental psychologists explain that young adults, defined by Erik Erikson as 20 to 40 years old, commonly focus on attending further education or work, live away from home for the first time, establish their career, become financially independent from family, become involved with a significant other, may get married, may parent children, and may attend to caregiving of aging relatives (Broderick & Blewitt, 2010). My review on young adulthood and caregiver interventions demonstrated no research focusing on the unique issues, needs, and interventions of young adults facing caregiving of children with special needs, spouses, or parents.
Young Caregivers’ Issues: Burden, Self-Neglect, Psychological Distress
Based on developmental theories and adult caregiver research, there are general and unique issues or needs faced by young adult caregivers. Qualitative research, conducted by William and Bakitas (2012), identified common issues for family caregivers, to include grief reactions of becoming a caregiver, new and altered relationships, the strain of caregiving and caregiver burden, declining cognitive, behavioral, affective, and spiritual/existential responses to caregiving, and prior experience and social context.
Caregiver burden, according to Calhoun, Beckham, and Bosworth (2002), is described as both the objective burdens (e.g. financial difficulties) associated with caring for the care recipient, as well as the subjective burden (e.g. caregiver responses) associated with caregiving demands. The National Alliance for Caregiving (2009) reported that 26% caregivers of younger adults and 39% caregivers of special needs children are in high burden situations, with 11% caregivers of younger adults and 24% caregivers of special needs children providing care for at least 41 or more hours a week. Williams and Bakitas (2012) found that it was more common for cancer family caregivers to neglect their own needs, out of the lack of time and out of guilt.
Concerning psychological distress, Williams and Bakitas (2012) found that cancer family caregivers described their affect reaction to caregiving as an emotional roller coaster and a spectrum of emotions including hopefulness, bitterness, anger, resentment, fear, depressed mood, anticipatory grief, and compassion for others. Research conducted by Calhoun et al. (2002) determined that spousal caregivers of Veterans with chronic PTSD experienced more depression, anxiety, hostility, and obsessive-compulsive symptoms than the comparison control group of spouses with non-PTSD Veterans. Concerning spiritual and/or existential needs, Williams and Bakitas (2012) reported that many cancer family caregivers struggled to find meaning in their caregiving experience, struggled with uncertainty, and struggled with confronting mortality. Given young adults’ unique developmental needs and a lack of available resources and interventions, we estimated that young adult caregivers’ likely experience high social isolation, interruptions and set-backs with life goals (relationships, career, school, and leisure), perceived stress, caregiver burden, psychological distress, and role strain.
Red Flags:
Withdrawing from friends and family.
Loss of interest in activities.
Loosing or gaining weight.
Inability to fall asleep, stay asleep, or early morning awakening.
Feeling blue, irritable, or hopeless.
Feeling isolated.
Increased medication, alcohol, or drug use.
Persistent anxiety, anger, or guilt.
***If you ever feel the need to harm yourself or your care recipient, you need immediate help! Call your local Crisis Hotline (NoVA CrisisLink Regional Hotline: 703-527-4077, CrisisLink Regional Textline: Text CONNECT to 85511), or go to your nearest Hospital's Emergency Room.
Two Promising Interventions to Reduce Stress and Depression for Adult Caregivers
Sorensen and colleagues (2002) reported that psychoeducational interventions had significant effects on all outcome variables, whereas Pinquart and Sorenson (2006) established that psychoeducational interventions demanding active participation (role playing or applying the knowledge and abilities during homework) caused the broadest effects on all outcome variables. Please note, that I am offering three relevant psychoeducational classes: one for spousal caregivers, one for moms dealing with anger and guilt, and one for parent caregivers with a child who has a genetic condition diagnosis.
Mindfulness Based Stress Reduction (MBSR) interventions have been researched and tailored to adult caregiver groups. The typical MBSR program consists of eight weekly sessions with or without a silent retreat and with homework, experienced by an experienced MBSR teacher trained by the University of Massachusetts Medical School Center for Mindfulness. The research results are somewhat mixed, but overall MBSR has been found to reduce perceived stress and mood disturbance in both parent caregivers and caregivers of adults. As an alternative to MBSR practices past on Buddhist principles, Christian caregivers may be more interested in learning about contemplative and centering prayer practices associated with early Christian Dessert Fathers, St. Ignatius of Loyola, and Trappist monks. Father Thomas Keating has written numerous books on the subject.
Self-Assessment
If you are a caregiver, you need to consider your grief reactions, new and altered relationships, caregiving burden, cognitive, behavioral, affective, and spiritual/existential decline in response to your caregiving, and prior experiences with caregiving. Additionally, you need to consider that you may be more at risk for caregiver burnout if you have a history of: depression, anxiety disorders, substance abuse, role strains, and stresses in your marriage/relationship, job, student role, social life, family-of-origin, and parenting other children.
To identify how well you are doing as a parent, spousal, or adult family caregiver, please take the Caregiver Strain Index. If you report 7 or more of these items, it is time for you to seek counseling as an intervention for yourself. Always remember, how well your care receiver does emotionally (whether they are a child or spouse), is also related to how well you do emotionally and vice versa. It is paramount for you to take steps to take care of all your needs, in addition to supporting your loved one. A counselor will help you to stand up to your needs, explore reasons of guilt reactions, improve assertiveness skills, help you to explore actual versus perceived stresses, and help you to come up with a respite plan, among other particulars. Short-term couples counseling to work on relationship maintenance, intimacy issues, and differences in needs and grief reactions, is also helpful to build resilience in your partnership.
Resources
Please take a look at the below resources for some general caregiving organizations, with information on mindfulness based stress reduction and contemplative prayer (for those seeking a more Christian-centered approach to meditation). Please contact me at christinaschultz.newdirections@gmail.com should you be interested in my Caregiver Support Group. Please also contact me if you need help identifying particular area resources. I will do my best to help you locate appropriate local services. Unfortunately, there are not many DMV resources geared towards young and middle aged caregivers caring for children, siblings, and spouses/partners, which is why I have a particular passion to support these two groups.
Caregiving Resources
American Association of Caregiving Youth, http://www.aacy.org/
Caregiving Action Network (formerly called the National Family Caregivers Association), http://www.caregiveraction.org
Caregivers of Children, http://www.caregiving.org/data/Report_Caregivers_of_Children_11-12-09.pdf
Caregiver Stress Resources, http://www.caregiverstress.com/
Family Caregiver Alliance, https://www.caregiver.org/
National Alliance for Caregiving, http://www.caregiving.org/
Well Spouse Association (for Spousal Caregivers), http://www.wellspouse.org/
Young Adult and Young Adult Spouses/Partners Online Caregiver Support Groups (for Cancer Care Recipients), http://www.cancercare.org/support_groups
Mindfulness Programs
Mindfulness Training Institute of Washington, http://www.mindfulnesstraining.org/
Mindfulness-Based Stress Reduction at Georgetown University Hospital, https://www.medstarhealth.org/Pages/Services/Mental-Health/MedStar-Georgetown/Mindfulness-Based-Stress-Reduction.aspx
Mindfulness-Based Stress Reduction at GW Center For Integrative Medicine, http://www.gwcim.com/services/mindfullness-based-stress-reduction-mbsr/
Mindfulness Workshops DC Meetup Group, http://www.meetup.com/Mindful-Resources-Classes-Workshops-More/
Catholic Christian Contemplative & Centering Prayer Programs
Contemplative Outreach of Washington & Maryland, http://comwcp.org/
Contemplative Outreach, http://www.contemplativeoutreach.org/centering-prayer-free-online-support-groups
St. Ignatius of Loyola's Lord Teach Me to Pray Catholic Church Program, http://lordteachmetopray.com/, available at St. Louis Alexandria, St. Mary's Alexandria, St. Mary of Sorrows Fairfax Station, St. John the Beloved McLean, and more.
Contemplative Prayer, St. John Neumann Reston, Thursdays at 7pm, https://www.saintjn.org/centering-prayer/
Trappist Retreats, Holy Cross Abbey, https://www.virginiatrappists.org/
References
Bazzano, A. Wolfe, C., Zylowska, L., Wang, Schuster, E., Barrett, C., & Lehrer, D. (2013). Mindfulness based stress reduction (mbsr) for parents and caregivers of individuals with developmental disabilities: A community-based approach. Journal of Child and Family Studies, Dec 3, 2013, No Pagination Specified.
Broderick, P.C., & Blewitt, P. (2010). The Life Span: Human Development for Helping Professionals (3rd Ed). New Jersey: Pearson Education.
Calhoun, P. S., Beckham, J. C., & Bosworth, H. B. (2002). Caregiver burden and psychological distress in partners of veterans with chronic posttraumatic stress disorder. Journal of Traumatic Stress, 15(3), 205-212.
Carver, C. S. (1997). You want to measure coping but your protocol’s too long: Consider the brief cope. International Journal of Behavioral Medicine, 4, 92-100.
Chiesa, A., & Serretti, A. (2009). Mindfulness-based stress reductions for healthy people: A review and meta-analysis. The Journal of Alternative and Complementary Medicine, 15(5), 593-600.
Epstein-Lubow, G., McBee, L., Darling, E., Armey, M., & Miller, I. W. (2011). A pilot investigation of mindfulness-based stress reduction for caregivers of frail elderly. Mindfulness, 2, 95-102.
Hou, R. J., Wong, S.Y. S, Yip, B.H. K., Hung, A.T. F., Lo, H.H. M., Chan, P.H. S., …Ma, S. H. (2013). The effects of mindfulness-based stress reduction program on the mental health of family caregivers: a randomized controlled trial. Psychotherapy and Psychosomatics, 83(1), 43-53.
Minor, H. G., Carlson, L. E., Mackenzie, M. J., Zernicke, K., & Jones, L. (2006). Evaluation of a mindfulness-based stress reduction (mbsr) program for caregivers of children with chronic conditions. Social Work in Health Care, 43(1), 91-109.
National Alliance for Caregiving (2009a). Caregivers of Children: A Focused Look at Those Caring for A Child with Special Needs Under the Age of 18. Retrieved from http://www.caregiving.org/data/Report_Caregivers_of_Younger_Adults_11-12-09.pdf
National Alliance for Caregiving (2009b). Caregivers of Younger Adults: A Focused Look at Those Caring for Someone Age 18 to 49. Retrieved from http://www.caregiving.org/data/Report_Caregivers_of_Children_11-12-09.pdf.
Pinquart, M., & Sorensen, S. (2006) Helping caregivers of persons with dementia: which interventions work and how large are their effects? International Psychogeriatrics, 18(4), 577-595.
Robinson, B. (1983). Validation of a caregiver strain index. Journal of Gerontology, 38, 344-348.
Sorensen, S., Pinquart, M., & Duberstein, P. (2002). How effective are interventions with caregivers? An updated meta-analysis. The Gerontologist, 42(3), 356-372.
U.S. Bureau of Census, Population Division (2014). Annual estimates of the resident population for selected age groups by sex for the United States, states, counties, and Puerto Rico
Commonwealth and municipios: April 1, 2010 to July 1, 2013, Retrieved from http://factfinder2.census.gov/faces/tableservices/jsf/pages/productview.xhtml?src=bkmk.
Whitebird, R. R., Kreitzer, M., Crain, L., Lewis, B. A., Hanson, L. R., & Enstad, C. J. (2012). Mindfulness-based stress reduction for family caregivers: A randomized controlled trial. The Gerontologist, 53(4), 676–686.
Williams, A., & Bakitas, M. (2012). Cancer family caregivers: A new direction for interventions.
Journal of Palliative Medicine, 15(7), 775-783.
