Mental & Emotional Wellness for Caregivers

An extensive collection of research conducted around caregiving indicates that individuals who provide care to family members with chronic or disabling conditions are themselves at a risk they rarely consider. Emotional, mental, and physical health problems arise from complex caregiving situations and the strains of caring for disabled or terminally ill relatives.

Evidence supports that most caregivers are ill-equipped for their role and offer their care with little or no support, yet more than one-third of caregivers continue to provide intense care to others while suffering from poor health themselves.1 Studies have shown that an influential factor in a caregiver’s decision to place an impaired relative in a long-term care facility is the family caregiver’s own health.2,3,4,5  For family members, caring directly for their loved one through such suffering can feel like the best, or only, option when considering all of the necessary factors. 

With the numerous medical advancements in our world today, the realities of shorter hospital stays, limited discharge planning, and expansion of home care technology, families are often being asked to take on greater care and financial responsibilities for longer periods of time than ever before.6,7 As an additional obstacle, caregivers are less likely to have health insurance coverage due to sacrificing career and occupation because of the time demands of caregiving.8 These emotional and cognitive risks and burdens can significantly inhibit the caregivers’:

  • ability to provide quality and balanced care;
  • lead to increased health care expenses;
  • impact the quality of life for both the caregiver and the recipients of this care.

Caregivers have lower levels of self-care.

Compelling evidence of difficulty maintaining appropriate care for basic needs has been discovered through scientific research studies.  A few examples include:

  • Caregivers are less likely to engage in preventive health behaviors.9
  • Spousal caregivers who provide 36 or more hours per week of care are slightly more likely to smoke and consume more saturated fat.10
  • Compared to non-caregivers, women caregivers are twice as likely not to fill a prescription because of the cost (26% vs. 13%).11
  • Nearly three quarters (72%) of caregivers reported that they had not gone to the doctor as often as they should, and more than half (55%) had missed doctors appointments.12
  • Caregivers’ self-care suffers because they lack the time and energy to prepare proper meals or to exercise. About six in ten caregivers in a national survey reported that their eating (63%) and exercising (58%) habits are worse than before.13
  • Caregivers in rural areas are at a greater disadvantage for having their own medical needs met due to difficulty getting to the hospital and doctor.14
  • Elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than non-caregivers of the same age.15
  • In 2006, hospitalization of an elderly spouse was found to be associated with an increased risk of caregiver death.16

Acknowledging these dangers, what is the next step?

By offering appropriate mental health services for family caregivers, these individuals can develop more effective and sustainable self-care strategies, coping tools, and mindfulness techniques in order to maintain a greater ability to balance the demands of a caregiving role. Although the negative impact on caregivers’ health and well-being is clear, recent data demonstrates its burdens can be eased through:

  • Assessment of family caregiver needs that leads to a care plan with support services;17,18
  • Caregiver education and support programs.19,20,21
  • Respite to reduce caregiver burden.22,23,24
  • Financial support to alleviate the economic stress of caregiving; and
  • Primary care interventions that address caregiver needs.25,26

Increased acknowledgement and treatment of medical, psychological, emotional, and behavioral symptoms among caregivers is a growing health concern and should be considered a priority. Keeping family caregivers healthy and able to provide care is key to maintaining balanced long-term care and with the aging of the population, in coming decades, this issue will only grow more significant to address.

As a caregiver, it is key to take whatever steps are possible to transform the caregiving situation, in the face of such intense challenges. That could mean actually finding a new doctor and more effective medical treatments, hiring a more attentive home health aide to provide greater support, or perhaps more importantly, allowing yourself the time and energy to maintain the mental and emotional “bandwidth” to persevere through the demanding responsibilities ahead.

Yet, we have to accept that there are many things about the caregiving situation we can’t change. When we have done this, we can begin to recognize that managing stress comes down to modifying our own behavior and reactivity to stressors. We can do this in a myriad of way:

  • When we improve our sleep, we increase our capacity for patience.
  • Engaging in more physical exercise releases endorphins into our bloodstream and reduce our tendencies to become anxious, depressed or apathetic.
  • When we reach out to others for help, we begin to recognize that we are by no means alone.

 What is Mindfulness? How is it helpful to the caregiver?

 I recommend several types of mindfulness practices to decrease the intensity of our emotional reactivity to stress. The term “mindfulness” does not refer to distracting ourselves from the suffering around us. Quite to the contrary, it involves engaging in steady, rhythmical breathing and focused concentration to help us become more aware of, but less reactive to, our burdens as caregivers.

As, different individuals may respond to different mindfulness practices more or less readily than others, here are a few variations:

Breathe in… Breathe out… Sitting in a comfortable position, count the breaths you inhale from 1 to 10.  Hold for a second, then, count the exhale from 1 to 10.  Repeat this exercise, breathing deeply and evenly while trying to remain focused on the present moment. Try not to get frustrated if your mind begins to drift, just ease it back on track. With practice, you can begin to allow your thoughts to float in and out, without excessive dwelling and “overthinking.”

Picture yourself… For many caregivers, in my experience, just sitting and breathing alone feels awkward and uncomfortable, especially at first. For many individuals, I recommend trying deep and even breathing for five or 10 minutes while visualizing a favorite relaxing moment— sipping your favorite beverage, lying on the beach on a summer’s day, or walking through a cool, tree-shaded path in a park. The power of these sensory moments engages the mind and provides a kind of mental and emotional “level up.” Most individuals provide feedback that they emerge from these reveries feeling replenished and refreshed.

Get a move on! Some caregivers feel there is too much to be accomplished and prioritized over sitting, breathing, and visualizing. They need a more active way to relax. For these folks, I suggest a walking form of mindfulness — literally, to take a jaunt in the neighborhood.  However, this is not just some idle stroll. It means breathing deeply and focusing intently on the sensations and experience — the smell of freshly cut grass, the sound of a jogger walking by, the warm feeling of the sun on your face. The more deeply you can immerse yourself in the present, you may find yourself feeling lighter and more prepared to muster the courage to resume your caregiving duties.

Be Creative!  Artists have long benefitted from the deep concentration that is associated with creative activity.  So much so connected, that this concentration can produce a kind of “creative high” afterward. We all have our own inspiration and passion that can be defined as creative. When I write, as I am right now, for example, I breathe more steadily and more deeply.  I also notice myself lost in the process of crafting the proper examples, phrases, adjectives, sounds, and meanings on the page. This is my mindfulness. Take time for your own, and you are likely to feel a greater sense of rejuvenation and potential in your demanding, yet, potentially rewarding responsibility.

Namaste.

 Kathleen Pendergast, LCPC, is a clinical psychotherapist and couples therapist, offering mental health counseling services with Urban Balance, Chicago, IL.

 Resources

1 Navaie-Waliser, M., Feldman, P.H., Gould, D.A., Levine, C.L., Kuerbis, A.N. & Donelan, K. (2002). When the caregiver needs care: The plight of vulnerable caregivers. American Journal of Public Health, 92(3), 409–413.

 2 Buhr, G.T., Kuchibhatla, M., & Clipp, E. (2006). Caregivers’ reasons for nursing home placement: Cues for improving discussions with families prior to the transition. The Gerontologist, 46(1): 52-61.

3 Whitlatch, C.J., Feinberg, L.F., & Sebesta, D.S. (1997). Depression and health in family caregivers. Journal of Aging and Health, Vol.9 (2), 222-243.

4 Whitlatch, C.J., Feinberg, L.F., & Stevens, E.J. (1999).  Predictors of institutionalization for persons with Alzheimer’s disease and the impact on family caregivers.  Journal of Mental Health and Aging, Vol. 5(3). 275-288.

 5 Lieberman, M.A. & Kramer, J.H. (1991). Factors affecting decisions to institutionalize demented elderly. The Gerontologist, 31, 371-374

 6 Family Caregiver Alliance. (2006). Caregiver Assessment: Principles, Guidelines and Strategies for Change.Report from a National Consensus Development Conference (Vol. I). San Francisco: Author.

7 Levine, C., (Ed.). (2004). Always On Call: When Illness Turns Families Into Caregivers. New York: United Hospital Fund.

 8 Ho, A., Collins, S., Davis, K. & Doty, M. (2005). A Look at Working-Age Caregivers Roles, Health Concerns, and Need for Support (Issue Brief). New York, NY: The Commonwealth Fund. 

 9 Schulz, R., Newsom, J., Mittelmark, M., Burton, L., Hirsch, C. & Jackson, S. (1997). Health effects of caregiving: The Caregiver Health Effects Study: an ancillary study of The Cardiovascular Health Study. Annals of Behavioral Medicine, 19: 110-116.

10 Lee, S.L., Colditz, G.A., Berkman, L.F. & Kawachi, I. (2003). Caregiving and risk of coronary heart disease in U.S. women: A prospective study. American Journal of Preventive Medicine, 24(2), 113–119.

11 The Commonwealth Fund. (1999). Informal Caregiving (Fact Sheet). New York: Author.

12 National Alliance for Caregiving & Evercare. (2006). Evercare® Study of Caregivers in Decline: A Close-up Look at the Health Risks of Caring for a Loved One. Bethesda, MD: National Alliance for Caregiving and Minnetonka, MN: Evercare.

13 Ibid.

14 Tanner Sanford, J., Johnson, A.D., & Townsend-Rocchiccioli, J. (2005). The Health Status of Rural Caregivers. Journal of Gerontological Nursing, 31(4), 25-31.

15 Schulz, R. & Beach, S. (1999). Caregiving as a risk factor for mortality: The Caregiver Health Effects Study, JAMA, 282: 2215-2219.

16 Christakis, N.A. & Allison, P.D. (2006). Mortality after the hospitalization of a spouse. New England Journal of Medicine, 354: 719-730.

 17 Gwyther, L.P., Ballard, E.L. & Hinman-Smith, E.A.(1990). Overcoming Barriers to Appropriate Service Use: Effective Individualized Strategies for Alzheimer’s Care. Durham, N.C.: Center for the Study of Aging and Human Development.

18 Guberman, N., Keefe, J., Fancey, P., Nahmiash, D. & Barylak, L. (2001). Assessment Tools Serving the Needs of Caregivers: A Document to Better Understand the Importance of Assessing Caregivers’ Needs. Montreal, Canada: School of Social Work, University of Quebec at Montreal.

19 Cooke, D., McNally, L., Mulligan, K., Harrison, M., & Newman, P. (2001). Psychosocial interventions for caregivers of people with dementia: A systematic review. Aging & Mental Health, 5(2): 120-135.

20 Gallagher-Thompson, D., Lovett, S., Rose, J., McKibben, C., Coon, D., Futterman, A., & Thompson, L.W. (2000). Impact of psycho-educational interventions on distressed caregivers. Journal of Clinical Geropsychology, 6(2): 91-110.

 21Family Caregiver Alliance. (2004). California Caregiver Resource Centers 2004 Satisfaction Survey. San Francisco, CA: Author.

22 Lyons, K. & Zarit, S. (1999). Formal and informal support: The great divide. International Journal of Geriatric Psychiatry, 14, 183-196.

23 Zarit, S., Gaugler, J. & Jarrott, S. (1999). Useful services for families: Research findings and directions. International Journal of Geriatric Psychiatry, 14: 165-181.

24 Zarit, S., Stephens, M., Townsend, A. & Greene, R. (1998). Stress reduction for family caregivers: Effects of adult day care use. Journal of Gerontology: Social Sciences, 53B: S267-S277.

25 The Lewin Group. (2002). The national family caregiver support program resource guide. Falls Church, VA: Author.

26 Kaye, L.W., Turner, W., Butler, S.S., Downey, R. & Cotton, A. (2003). Early intervention screening for family caregivers of older relatives in primary care practices. Family Community Health, 26(4): 319–328.