Commentary Can Healthcare Providers Contribute to the Prevention of Dependent Adult Abuse? Recognizing and Intervening for Caregiver Stress Cheryl Hawk, DC, PhD, CHES 1* Address: 1 Professor and Director of Clinical Research, Logan College of Chiropractic, USA. Email: Cheryl Hawk, DC, PhD, CHES * cheryl.hawk@logan.edu * Corresponding Author Topics in Integrative Health Care 2011, Vol. 2(3) ID: 2.3002 Published on September 30, 2011 Link to Document on the Web As Dr. Salsbury describes in her article, dependent adult abuse is an under-recognized issue in the U.S. However, it is one which must be addressed, not only because it currently affects many of our most vulnerable citizens but also because it is likely to grow. Currently 1 in 7 Americans suffers a disability, and this number is expected to increase. 1 For the disabled who require personal assistance, at least 75% of their caregivers are informal, being unpaid family members or friends living either inside or outside the disabled person s home. Approximately 12% of middle-aged Americans currently are involved in caregiving for a family member, 2,3 and this number is likely to increase as the number of disabled increases. One part of an approach to the problem of dependent adult abuse is prevention, through recognition and appropriate management of caregiver stress. Caregiver stress has become a recognized psychosocial risk factor for poorer health outcomes, including increased risk for depression, injury and, particularly for men, stroke. 4, 5 Caregivers of people with dementia are particularly vulnerable to stress, especially when the patient is a close relative such as a spouse or parent. 4, 6, 7 One possible outcome of unmanaged, and often unrecognized, caregiver stress is abuse of the caregiver s dependent. Caregiving stress is a complex combination of physical, emotional, social and economic factors. 2 As such, integrative care seems well-suited to address this increasingly prevalent health issue. A qualitative study of hospice workers stress identified the following issues as important needs related to caregiver stress: 1 P a g e
coping skills, sources for emotional support, self-care practices, logistical issues, and specifically for those caregivers working with the terminally ill bereavement. 8 However, the primary issue is that caregivers need to recognize that they are under stress, and that their needs must be met in order for them to continue to function successfully in their role, whether it is as a paid caregiver or as a caregiver for a family member. Often health care providers focus solely on the dependent adult patient and do not pay attention to the caregiver until it is too late, and abuse has already occurred. Early warning of the potential for abuse may be detected if the provider recognizes the signs of excessive stress in the caregiver. It may be possible to actually prevent the situation from deteriorating into an abusive one, if the caregiver is helped to recognize her or his stress and is provided with appropriate resources to manage it successfully. Identifying Caregiver Stress There are several questionnaire instruments in use to identify stress, or specifically, caregiver stress. An important point is that stress is a subjective phenomenon, and is often dependent on how confident the person is that she or he can manage the stress, rather than the objective facts about the stressful situation itself. It may be helpful to screen for depression first, since it is often closely associated with excessive perceived stress. The U.S. Preventive Services Task Force recommends screening all adults by means of 2 questions, in which a yes response to either question indicates a need for additional assessment for depression: 9 1. Over the past 2 weeks, have you ever felt down, depressed, or hopeless? 2. Over the past 2 weeks, have you felt little interest or pleasure in doing things? For older adults caring for a family member, usually but not always a spouse, a more in-depth assessment for depression can be made using the Geriatric Depression Scale. 10 This instrument has 15 items with yes or no responses. The Perceived Stress Scale is a simple 4-item questionnaire which essentially assesses the person s confidence in his or her ability to manage stress. 11 It asks subjects how often they have felt: 1. unable to control the important things in life 2. confident about their ability to handle personal problems 3. that things were going their way 4. that there were too many difficulties to be able to overcome them Scoring is done by Likert scale of never (0), almost never (2), sometimes (2), fairly often (3) or very often (4), with items 2 and 3 reverse scored. 2 P a g e
The Caregiver Strain Index is a questionnaire which is helpful in identifying specific issues. Table 1 lists the issues included in this 13-item questionnaire. 12 Whether or not a provider uses the actual instrument, these are issues which should be taken into consideration with caregivers. The Revised Scale for Caregiving Self-Efficacy is a much more complex questionnaire eliciting the respondent s confidence in his/her ability in several domains related to caregiving. 13 This instrument is more likely to be administered by a social worker or counselor than by providers whose expertise is in treating physical conditions. It is essential to the well-being of both the dependent adult patient and to his or her caregiver that all their providers are aware of the issue of caregiver stress, however, and are able to recognize it in an early stage. Table 1. Issues included in the Caregiver Strain Index.* Disturbed sleep Inconvenience Physically difficult Restricts free time or freedom of action Adjustments to family life required Had to change plans Competing demands on time Emotional issues Upsetting behavior (by person being cared for) Personality and physical changes in the person being cared for Work issues Financial problems Feeling overwhelmed * Person administering questionnaire verbally lists possible difficulties related to caregiving, and asks individual to indicate with yes or no if they are applicable. Yes responses are summed; a score = 7 is indicative of high stress. Appropriate Referrals and Resources Like anyone under stress, caregivers are often lacking in self-efficacy, feeling overwhelmed by their responsibilities. This can be compounded by a deterioration in health related ignoring their own needs due to the pressures of caring for someone who, in their and often society s opinion, is worse off than they are. Providers caring for the dependent adult patient, first of all, must not neglect the family member who is the caregiver. Sometimes this person has unmet healthcare needs and unacknowledged 3 P a g e
risk factors which need to be addressed, and she or he should be given appropriate referrals/recommendations for care. For example, a medical physician, nurse, nurse practitioner or social worker providing case management for an Alzheimer s patient living at home may also be able to help the caregiving wife by referring her to a physical therapist or chiropractor for advice on proper lifting, and physical therapy and/or spinal adjustments for her back pain. Or she may benefit by referral to a massage therapist to assist in muscle relaxation, or a health coach to learn how to better selfmanage her stress. All providers should include family-member caregiver considerations when developing a treatment plan for a dependent adult patient. Almost always, a top priority for those suffering from caregiver stress is assistance in securing respite care in order to take care of their own needs. It has been found that caregivers who feel that they have no choice in their situation experience stress more intensely, and that the more burdened they feel, the greater the feeling of stress. 2 Thus resources that will increase their feeling of having options, and lessen their burden, should be considered. Medicare covers respite care for caregivers of terminally ill persons, under specific circumstances. However, there are also respite care options for caregivers of people who are not terminally ill. Health care providers should be aware of possible resources by being familiar with their local Area Agency on Aging (AAA). Local Senior Services and senior centers are also good resources. Senior volunteer services and private nonprofit agencies, as well as many churches, have varying types of respite care programs. As Dr. Salsbury explains in her article and I will repeat here for emphasis the U.S Department of Health and Human Services Eldercare Locator Services is an excellent resource for caregivers to get helpful information and find local agencies and services available in their community (http://www.eldercare.gov/eldercare.net/public/resources/factsheets/respite_care.aspx). All health care providers are responsible for recognizing and reporting dependent adult abuse. However, it would be beneficial for everyone involved if they would also be proactive in recognizing and responding with empathy to the presence of caregiver stress, which may lead eventually to abuse. Providing these families with appropriate information, treatment referrals if needed, and guiding them to needed resources for obtaining respite, might be a way to prevent abusive situations from developing. References 1. Field M, Jette AM. The Future of Disability in America. Washington, DC: The Institute of Medicine, National Academies Press, 2007. 4 P a g e
2. Winter KH, Bouldin ED, Andresen EM. Lack of choice in caregiving decision and caregiver risk of stress, North Carolina, 2005. Prev Chronic Dis 2010;7(2):A41. 3. Burridge L, Winch S, Clavarino A. Reluctance to care: a systematic review and development of a conceptual framework. Cancer Nurs 2007;30(2):E9-19. 4. Haley WE, Roth DL, Howard G, Safford MM. Caregiving strain and estimated risk for stroke and coronary heart disease among spouse caregivers: differential effects by race and sex. Stroke 2010;41(2):331-336. 5. Hayes J, Chapman P, Young LJ, Rittman M. The prevalence of injury for stroke caregivers and associated risk factors. Top Stroke Rehabil 2009;16(4):300-307. 6. Stirling C, Andrews S, Croft T, Vickers J, Turner P, Robinson A. Measuring dementia carers' unmet need for services--an exploratory mixed method study. BMC Health Serv Res 2010;10:122. 7. Gitlin LN, Winter L, Dennis MP, Hodgson N, Hauck WW. A biobehavioral home-based intervention and the well-being of patients with dementia and their caregivers: the COPE randomized trial. JAMA 2010;304(9):983-991. 8. Kutner J, Kilbourn KM, Costenaro A, et al. Support needs of informal hospice caregivers: a qualitative study. J Palliat Med 2009;12(12):1101-1104. 9. USPSTF. Guide to Clinical Preventive Services. Washington, DC: Agency for Healthcare Research and Quality (AHRQ), 2010. 10. Burns A, Lawlor B, Craig S. Rating scales in old age psychiatry. Br J Psychiatry 2002;180:161-167. 11. Cohen S, Kamarck T, Mermelstein R. A global measure of perceived stress. J Health Soc Behav 1983;24(4):385-396. 12. Robinson BC. Validation of a Caregiver Strain Index. J Gerontol 1983;38(3):344-348. 13. Steffen AM, McKibbin C, Zeiss AM, Gallagher-Thompson D, Bandura A. The revised scale for caregiving self-efficacy: reliability and validity studies. J Gerontol B Psychol Sci Soc Sci 2002;57(1):P74-86. 5 P a g e