Caregiver Education

Author(s): Paul Thananopavarn, MD, Wei Huang MD, PhD, Patricia Griffiths, PhD

Originally published:09/20/2014

Last updated:09/20/2014

1. OVERVIEW AND DESCRIPTION

Caregiver Issues for Older Adults

A central goal of rehabilitation medicine is to restore or maintain function and independence. When complete independence cannot be achieved, a caregiver is often necessary for a patient to be able to return home. The aging process can significantly diminish a person’s reserve capacity to compensate and recover from a disabling insult, complicating and prolonging the rehabilitation trajectory; therefore, caregivers for older adults may face additional challenges to providing care.

The increasing population of older adults brings with it a concomitant rise in the number of caregivers required to help them age in place. The U.S. Census Bureau estimates that the number of people over the age of 65 years will reach 80 million by 20501because, in large part, of the aging of the baby boom generation.

As people age, the likelihood of needing assistance with instrumental (cooking, banking, shopping) and basic (bathing, dressing, toileting) activities of daily living (ADLs) increases. Older adults are at risk for higher rates of physical and cognitive comorbidity and are also more likely to have multiple chronic conditions that require complex support, management, and care.2All of these issues exert a profound impact on rehabilitation outcomes and are influenced greatly by the presence of a caregiver.3

Relevance to Clinical Practice

In regards to postacute care, having an informal caregiver can improve a person’s functional potential and rehabilitation outcome in the following ways: (1) a patient with an identified caregiver is more likely to be admitted into an inpatient rehabilitation facility for intensive therapy because his or her potential for home discharge is greater than someone without a caregiver3; (2) in the subacute rehabilitation setting, a patient with a caregiver is much more likely to return home than be relegated to long-term care; and (3) once home, a patient with a caregiver has increased potential for improvement by virtue of the many duties the caregiver assumes (ADLs, medical tasks, care coordination).4Clearly, caregivers fulfill a pivotal role in the rehabilitation process, providing the foundation of care for older adults in the community. It is, therefore, incumbent on rehabilitation professionals to learn more about these caregivers and find ways to support and encourage them through their challenges.5

Caregiver Demographics

The first national profile of caregivers was published in 1997 by The National Alliance for Caregiving (NAC) and American Association of Retired Persons (AARP).6A 2009 update of the initial findings includes a report focused on those caring for someone age 50 years or older (N=1377).7In 2012, the AARP Public Policy Institute and United Hospital Fund also published results from a national online survey of 1677 family caregivers to determine the medical tasks they perform.8According to the NAC, U.S. caregivers number 66 million and comprise close to one third of the adult population.6Approximately 52 million of them serve as an unpaid caregiver to adults over the age of 18 years, and 44 million care for those over the age of 50 years. Most caregivers are women (66%) who assist a relative (89%), with 36% providing care for a parent. Both caregivers (mean age, 50 y) and care recipients (mean age, 77 y) are aging as the population ages.7Therefore, caregivers are at risk for the same age-related morbidities and chronic conditions as experienced by those for whom they care.

Caregiver’s Work

Caregivers provide care for old age (15%), dementia or cognitive impairment (15%), cancer (8%), stroke (6%), and mobility impairments (5%).6,7Caregivers spend an average of 20 hours a week providing care; however, this increases to 43% for cohabitating dyads.7All provide assistance with instrumental ADLs, particularly transportation, housework, shopping, and preparing meals.6,7Over half provide help with basic ADLs, most commonly transfers, dressing, and bathing. The caregiving workload or objective burden depends in large part on the person’s age, condition, and other factors (eg, dementia, veteran status). A recent survey reported that compared with caregivers nationally, caregivers of veterans report increased objective burden and longer duration of care provision.9In addition to ADLs, many caregivers also provide help with medical or nursing tasks (eg, managing medications and medical devices, dressing wounds, monitoring vital signs). Most caregivers who report providing intensive medical or nursing care believe they are preventing their relative from being institutionalized.6-9

Stress of Caregiving

Caregiving research repeatedly concludes that caregiving can be a rewarding endeavor; however, it can add both physical and psychologic stress and strain that may adversely affect the caregiver and, ultimately, the care receiver.10Nationally, one third of older caregivers feel that their situation is stressful, and 17% feel that their health has worsened with caregiving, especially if their duties have taken time away from other family and friends. Working caregivers report alterations in work schedules, and 20% have needed to take a leave of absence to deal with caregiving issues.6Caregivers who spend 40 or more hours a week providing care report greater declines in their own health. Complaints include poor sleep, fatigue, stress, pain, and depression. Understandably, half of caregivers who report declining health say that it has affected their ability to provide care.6,7

Caregiver Needs

Given the challenges in providing care, over three quarters of caregivers feel they need help and information. Reported sources of information include health care professionals, Internet, and other family, friends, or caregivers. The highest rated areas of concern for caregivers include safety, mobility, incontinence, challenging behaviors, managing stress, future planning needs, and talking to physicians and health professionals.6-10

Rehabilitation Team Interventions to Improve Quality of Life

Because caregivers rely on rehabilitation physicians and allied health professionals for much of their information and support, we must be aware of these issues in order to educate and support caregivers.11For example, given that falls are the leading cause of unintentional injury in older adults,12physicians must be able to perform a complete medical and falls evaluation. Bowel and bladder issues must be attended to because they dramatically increase the burden of care, and many accidents and falls occur in the bathroom.11Challenging behaviors must be addressed with a particular focus on depression, dementia, and delirium issues.13Consultation with a geriatric psychiatrist may be necessary in difficult or refractory cases. Physicians must corroborate with the caregiver and patient to formulate a plan of care that is understood and is reasonable to carry out.4This may mean investing extra time answering questions and writing down instructions for care and verifying and simplifying medications to prevent excess medication and errors.4,5According to one recent report, involving the caregiver in care and discharge planning results in improved patient satisfaction and outcomes and continuity of care; however, we caution that caregivers should not be expected to provide clinical care or perform medical tasks without adequate training and support.11

Physical and occupational therapy are often vital to prevent falls and functional decline and keep patients in the community. A home-based exercise program to reduce falls (eg, Otago14program) focuses on balance, strength, and mobility using exercises that can be performed at home without special equipment. Likewise, in-home face-to-face programs or teleprograms to train caregiving dyads to safely perform tasks using the appropriate assistive technology (eg, super poles, slide boards, walkers) are designed to prevent injury to the caregiver and recipient during ADLs.15,16A home evaluation is essential to eliminate hazards (eg, throw rugs, poor lighting) and to ensure proper equipment (eg, grab bars, raised toilet seats) is in place. Caregivers or family members must be included in these evaluations and trainings because they are instrumental in carrying out any home modifications.4,8,15,17

A consultation with a geriatrics case manager may be helpful to set up outpatient or home therapy services, home nursing assessment, and home health aides.8,11Social workers can advise on adult day care programs, assisted living, short-term rehabilitation, and long-term care facilities. Case workers may also help the caregiver applying for financial assistance. Consultation with a lawyer may be necessary to set up a living will and health care power of attorney to designate a person who will make medical decisions if the patient becomes incapacitated.

Toward the end of life, palliative care and hospice can provide much-needed patient and caregiver support with enhanced counseling, respite and bereavement services, and 24-hour nursing care during the last days of life.

2. Cutting Edge/Unique Concepts/Emerging Issues

Technology has great potential to facilitate rehabilitation and to support caregivers of older adults. Caregivers report wanting web-based and mobile technologies to help them provide care.18Technologies with the greatest potential include personal health record tracking, decision support tools, caregiving coordination, and medication support systems.18 With training and motivation, older caregivers will readily adopt new technologies,19,20particularly when barriers to use are perceived as low.18-20The Internet provides a portal to a variety of support services that can help both caregiver and care recipient. Sites (eg, caregiver.org, caregiver.com, caregiveraction.org, aarp.org) have extensive links to advice columns and experts, care for the caregiver support groups, resource locators, and financial calculators that directly address the concerns and burdens of the caregiver.

3. Gaps in Knowledge/Evidence Base

There have been numerous interventional trials that have shown modest improvements in caregiver psychological and health outcomes, predominantly addressing caregiver burden, stress, and depressive symptoms. A limitation of many of these studies is that the caregiving and care recipient population is heterogeneous. For example, caring for a person with mobility issues from a hip fracture is very different than caring for an individual with dementia and behavior problems. Even within a subgroup of dementia patients, caregiver outcomes may vary depending on the severity of the cognitive or behavioral problems of the care recipient.8,10Upcoming challenges to caregiver intervention trials include objectively measuring caregiving time, outcome-based care quality (eg, skin tears/pressure ulcers, urinary tract infections, flu vaccination rates), and extended health and economic benefits to the care recipient.17Studies will benefit from a common set of measurements and outcomes. Rehabilitation professionals can aid in this endeavor by actively soliciting information from their partners in the rehabilitation process, namely the patient and caregiver.

REFERENCES

1.Administration on Aging. A profile of older Americans: 2012. Available at: http://www.aoa.gov/AoARoot/(S(2ch3qw55k1qylo45dbihar2u))/Aging_Statistics/Profile/2012/docs/2012profile.pdf. Accessed February 11, 2014.

2. Marengoni A, Rizzuto D, Wang HX, Winblad B, Fratiglioni L. Patterns of chronic multimorbidity in the elderly population.J Am Geriatr Soc.2009;57:225-230.

3. Forster AJ, Murff HJ, Peterson JF, Gandhi TK, Bates DW. The incidence and severity of adverse events affecting patients after discharge from the hospital.Ann Intern Med.2003;138:161-167.

4. Boult C, Green AF, Boult LB, Pacala JT, Snyder C, Leff B. Successful models of comprehensive care for older adults with chronic conditions: evidence for the Institute of Medicine’s “Retooling for an Aging America” report.J Am Geriatr Soc.2009;57:2328-2337.

5. Uphold CR. Transitional care for older adults: the need for new approaches to support family caregivers.J Gerontol Geriatric Res. 2012;1:e107.

6. National Alliance for Caregiving, AARP. Caregiving in the US 2009. Available at: http://assets.aarp.org/rgcenter/il/caregiving_09_fr.pdf. Accessed February 11, 2014.

7. National Alliance for Caregiving, AARP. A Focused Look at Those Caring for Someone Age 50 or Older: Companion Report to Caregiving in the US: Executive Summary. 2009. Available at: http://assets.aarp.org/rgcenter/il/caregiving_09_fr.pdf. Accessed February 11, 2014.

8. Reinhard SR, Levine C, Samis S. Home alone: family caregivers providing complex chronic care. AARP Public Policy Institute and the United Hospital Fund. 2012. Available at: http://www.aarp.org/homefamily/caregiving/info-10-2012/home-alone-family-caregivers-providingcomplex-chronic-care.html. Accessed February 11, 2014.

9. National Alliance for Caregiving. Caregivers of Veterans – serving on the homefront. Available at: http://www.caregiving.org/data/2010_Caregivers_of_Veterans_FULLREPORT_WEB_FINAL.pdf. Accessed February 11, 2014.

10. Zarit SH, Edwards AB. Family caregiving: research and clinical intervention. In: Woods B, Clare L, eds.Handbook of Clinical Psychology and Ageing. 2nd ed. Sussex, UK: Wiley; 2008.

11. Rubenstein L. Falls in older people: epidemiology, risk factors and strategies for prevention.Age Ageing. 2006;35:ii37-ii41.

12. Tomas S, Mackintosh S, Halbert J. Does the “Otago Exercise Programme” reduce mortality and falls in older adults?: a systematic review and meta-analysis.Age Ageing. 2010;39:681-687.

13. Schulz R, Sherwood P. Physical and mental health effects of family caregiving.Am J Nur.2008;108:23-27.

14. Gibson MJ, Kelly KA, Kaplan AK. Family caregiving and transitional care: a critical review. 2012. Available at: http://www.caregiver.org/caregiver/jsp/content/pdfs/FamCGing_TransCare_CritRvw_FINAL10.31.2012.pdf. Accessed February 11, 2014.

15. Griffiths PC, Sanford JA. ADL task performance in mobility impaired older dyads: preliminary data from the CG ASSIST pilot.Assist Technol Res Ser.2013;33:446-451.

16. Sanford JA, Griffiths PC. Using remote tele-video technology to provide in-home AT assessment and training to mobility-impaired elders and their caregivers.Assist Technol Res Ser. 2013;33:741-747.

17. United Healthcare. e-connected family caregiver: bringing caregiving into the 21st century. 2011. Available at: http://www.caregiving.org/data/FINAL_eConnected_Family_Caregiver_Study_Jan%202011.pdf. Accessed February 11, 2014.

18. Griffiths PC, Davis N, Lin J, et al. Using telehealth technology to support family caregivers: description of a pilot intervention and preliminary results.Phys Occup Ther Geriatr.2010;28:307-320.

19. Rogers WA, Fisk AD. Toward a psychological science of advanced technology design for older adults.J Gerontol B Psychol Sci Soc Sci. 2010;65:645-653.

20. Van Houtven CH, Voils CI, Weinberger M. An organizing framework for informal caregiver interventions: detailing caregiving activities and caregiver and care recipient outcomes to optimize evaluation efforts.BMC Geriatr.2011;11:1-18.

Author Disclosures

Paul Thananopavarn, MD
Nothing to Disclose

Wei Huang MD, PhD
Nothing to Disclose

Patricia Griffiths, PhD
Nothing to Disclose

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