Family caregivers

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Not to be confused with Personal Care Assistant.

Family caregivers (also known as “carers”) are “relatives, friends, or neighbors who provide assistance related to an underlying physical or mental disability but who are unpaid for those services.” [1]

Family caregivers can provide a wide variety of services to care recipients: administering medications and physical therapy, assisting with daily tasks (including personal care, meal planning and preparation, and eating, as well as walking, sitting down and standing up), meeting with healthcare providers, daily supervision and activity (especially when there is a cognitive impairment, such as Alzheimer’s disease), coordinating treatment regimens and schedules, helping with or managing financial and administrative aspects of medical care, health insurance and more. They can also provide emotional support for coping with disease.

A recent study says that 26.5% of all American adults today are family caregivers.[2] A 2012 report by the Alzheimer’s Association states that 15 million of those family caregivers are caring for a person with Alzheimer’s or another dementia.[3] The value of the voluntary, "unpaid" caregiving service provided by caregivers was estimated at $310 billion in 2006 — almost twice as much as was actually spent on home care and nursing services combined.[2] It's more than the US government spent on Medicaid, and greater than the Federal budget deficit. By 2009, about 61.6 million caregivers were providing "unpaid" care at a value that had increased to an estimated $450 billion.[4] It is projected that nearly one in five United States citizens will be 65 years of age or older by the year 2030. By 2050 this older population is expected to double in size.[5] Government systems such as Social Security and Medicare were not set up to sustain this projected number of older individuals who will require these services; especially not for as many years as they will be eligible for benefits. Alternatives to these programs will become an increasingly important part of our changing society. Family Caregivers can help bridge this gap.

The family caregiver experience[edit]

A 2011 survey of family caregivers in the United States found that almost half (46%) take on tasks that are traditionally considered “nursing” or “medical,” such as injections, wound care, and operating medical equipment and monitors.[6] While the family caregivers’ assumption of such responsibilities is not new, the frequency may have increased over time due to shorter hospital stays, adults living longer with significant ailments, and technological and health care improvements allowing more nursing or medical care to be provided at home. This trend has implications for families, patients, family caregivers’ workplaces, health care organizations, and insurers, including Medicare and Medicaid. A survey by AARP in 2010 states that "29% of the U.S. adult population, or 65.7 million people, are caregivers, including 31% of all households. These caregivers provide an average of 20 hours of care per week."[7]

According to a November, 2007 survey on family caregiving, most family caregivers feel more positive about their experiences than they did just before they took on the responsibility, with significant differences in expectation prior to becoming a caregiver and the actual experience.

The survey also found that caregivers are often burdened by high out-of-pocket costs in caring for a spouse or parent, but:

  • Sixty percent of the caregivers called the experience "very or extremely rewarding," a 50% jump over the number of caregivers who thought in advance they would find the experience "very or extremely rewarding." Nearly 80% (78.8%) percent of the caregivers found the experience to be at least "rewarding," an increase of more than one-third from initial expectation.
  • A majority of the caregivers-nearly 54%-formed a stronger bond with the patient during the time they were together.
  • Almost 60% of the respondents reported an improvement in the quality of their relationship with the person for whom they cared. By contrast, fewer than 10% said that their relationship got worse during the time they were caregivers.
  • Social activities of the caregiver tend to diminish. However, the diminished social activities are replaced with an increased quality of relationship with the care recipient.
  • More than 2/3 of all caregivers (68.7%) said they enjoy the tasks associated with caregiving. However, prior to assuming the role, fewer than half (45.5%) thought they would enjoy caregiving.
  • The amount of satisfaction with caregiving is directly related to the type of disease from which the care recipient suffers. Caregivers of depression sufferers, cancer and cardiac disease have more difficulty than those caring for patients who suffer from diabetes, high blood pressure and arthritis.
  • More than ¾ of caregivers are female. Nearly ¾ range in age from 35 to 59.

Other information about US caregivers:

  • 1.4 million children ages 8 to 18 provide care for an adult relative; 72% are caring for a parent or grandparent. Fortunately, most are not the sole caregiver.[8]
  • 30% of family caregivers caring for seniors are themselves aged 65 or over; another 15% are between the ages of 45 to 54.[9]

Caregiver Gain

As discussed above, there are benefits to the caregiving experience. New research even reports gains in cognitive function in older women who provide informal (unpaid) care on a continuing basis.[10] This cross-sectional study tested over 900 participants at baseline and again after two years for memory and processing speed, functions which are necessary for many caregiving tasks. The participants were divided into three groups, those who were caregivers over the entire two-year period, those who were caregivers at the start of the study but not at the two-year follow-up, and those who were not caregivers at any time during the research period. At follow-up, those who were caregivers throughout the study had the highest scores for both cognitive functions but also the highest reported levels of stress, while those participants who were not caregivers at any time during the study had the lowest scores for both cognitive functions and the lowest reported levels of stress. These results are consistent with the healthy caregiver hypothesis which states that while those older adults who are more likely to be caregivers are healthier to start with, it is the work of caregiving that helps keep them healthier than older adults who are not caregivers. This model contrasts with the long-held idea that the stress of caregiving results in poorer functioning over time.

In contrast, subsequent research[11] has found that the benefit to family caregivers varies depending on the health of the person receiving care. Higher numbers of chronic conditions among those receiving care were associated with increased job stress, concern over making harmful errors, hypervigilance, feelings of depression, and feelings of suboptimal health among family caregivers. Nevertheless, family caregivers reported that they felt emotionally closer to the care recipient, and that they were making a positive contribution to the care recipient’s life. In addition, training in medical and nursing tasks was found to have a protective effect for the family caregiver. Research has also found that most family caregivers said they had not received training about medication management from a professional, but rather had learned it on their own.

Taking Care of the Caregiver

Although caregiving can be rewarding for many, it is undeniably stressful as well. One of the most common negative outcomes of being a caretaker is the infringement on time and activities. In most cases, this role becomes a full-time job in itself and does not leave much time for leisure activities the caregiver liked to participate in before becoming a primary caregiver. While this seems like an obvious outcome of caregiving, it is a critical cause of depression and if steps are not taken to intervene and provide the primary caretaker with adequate off time then they will quickly become not only depressed but resentful of their role as well [12] Other negative outcomes of being an informal primary care giver can include an unfavorable relationship forming between the caregiver and receiver dyad as well as declines in both physical and mental health of the caregiver. wide variety of health issues that arise from being a primary caregiver. They reported that when caregivers were compared to reasonably equal non-caregivers, they were found to have a 15% lower level of antibody response and a 23% higher level of stress hormones in their bodies. This indicates the stress and strain placed upon primary caregivers can greatly impact their health and ability to recover from illness themselves.[13] There are, however, strategies that caregivers and communities can use to reduce the effects of this added stress. Providing a type of respite care is the easiest intervention to reduce this negative outcome. It varies in forms but the basic principle of respite care is to provide temporary care for a care recipient when their primary caregiver must be absent. It can be as informal as sitting with someone while the caregiver runs errands to a more formal setting such as an Adult Day Service or even overnight stay in an hospital or nursing home facility.[14] Information, resources and support are often available through senior centers and local public health departments, but more research is needed to determine what services are helpful. Two studies that investigated the effectiveness of different interventions on the health of caregivers are described below.

The Resources for Enhancing Alzheimer's Caregiver Health (REACH) II intervention[15] was a randomized clinical trial that provided self-care educational information and training on self-care skills, tailored to each caregiver's needs, to the intervention group, or a basic health information packet and two non-educational phone calls to the control group. Each intervention was designed to deal with a participant's personal issues using information provided by the caregiver at the beginning of the study, and researchers were personally involved during the 12 face-to-face and telephone sessions. At the end of the six-month study period, those receiving the intervention reported better physical and emotional health and less "burden and bother" with their caregiving duties than those in the control group.

Another study tested the effectiveness of three different interventions (a support group, provision of literature on self-care and caregiving, and creative movement) on five mental health variables of caregiving daughters of frail mothers.[16] Each study participant chose the intervention that appealed to her most, rather than being randomly assigned to one. Study participants were then evaluated for self-reported irritability, depression, anxiety, stress, and concentration, and asked to assess the chosen intervention on an on-going basis. Comparing the outcomes of the five variables, the support group's self-ratings suggested greater improvement than the literature group, while the creative movement group was too small for a meaningful comparison. The participants' assessments of all three interventions were positive, with caregivers using words such as "validation," "reinforcement," and "relaxing." All study participants agreed that they would choose to participate again, and in the same intervention group. Those in the support group found the intervention so helpful that they continued to meet after the study's completion. For caregivers without the ability to join nearby support groups, online support groups such as a caregiver forum can offer similar benefits.

A different study has shown that family caregivers whose loved ones receive round the clock migrant home care services report greater satisfaction with the services, lower levels of burden, higher levels of subjective health and better well being compared with home care services provided for only several hours per week. This is despite the fact that the group that relied on round the clock migrant home care workers had lower physical functioning.[17]

Signs of Caregiver Stress[edit]

Caregiver stress is the emotional and physical strain of care giving. [18]

How can I tell if I have caregiver stress? First, you must realize that your symptoms cannot simply be dismissed as “just stress”. Your sentiments must be handled carefully and immediately. Some of the signs of caregiver stress include:

  • Feeling overwhelmed
  • Extended Frustration
  • Sleeping too much or too little
  • Gaining or losing significant amounts of weight
  • Feeling tired most of the time
  • Loss of interest in activities you used to enjoy
  • Becoming easily irritated or angered
  • Feeling constantly worried
  • Depression
  • Frequent headaches, bodily pain or other physical problems
  • Drug abuse, including prescription drugs

If you find yourself wanting to physically or emotionally harm the person you are caring for, get help immediately. If you know of a caregiver exhibiting these symptoms, try to get them help. You can even offer to sit with the person they give care to for a few hours to give them a break. Caregivers need a lot of help, it may be rewarding, but it requires a great deal of time, work and effort.

See also[edit]

National and international organizations[edit]

References and additional reading[edit]

  1. ^ Committee on the Future Health Care Workforce for Older Americans, Board on Health Care Services, INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES. "RETOOLING FOR AN AGING AMERICA: BUILDING THE HEALTH CARE WORKFORCE". THE NATIONAL ACADEMIES PRESS. 
  2. ^ a b Peter S. Arno (Fall 2006), (presentation), presented at the NIH Care Coordination and the Caregiving Forum  Missing or empty |title= (help)
  3. ^ Alzheimer's Association. "2012 Alzheimer’s Disease Facts and Figures". Alzheimer’s & Dementia, Volume 8, Issue 2. 
  4. ^ Feinberg, L., Reinhard, S., & Choula, R. AARP, Public Policy Institute. (2011). Valuing the invaluable: 2011 update the growing contributions and costs of family caregiving.
  5. ^ [Vincent, G., Velkoff, V. (2010). The next four decades the older population in the United States: 2010 to 2050. U.S. Census Bureau]
  6. ^ Susan C. Reinhard, Carol Levine, and Sarah Samis. "Home Alone: Family Caregivers Providing Complex Chronic Care" (PDF). AARP and United Hospital Fund. p. 41. Retrieved 1 October 2012. 
  7. ^ [1]
  8. ^ National Alliance for Caregiving and the United Hospital Fund (2005), (presentation), National Alliance for Caregiving and the United Hospital Fund  Missing or empty |title= (help)
  9. ^ U.S. Department of Health and Human Services (2001), (presentation), Rockville: Agency for Healthcare Research and Quality  Missing or empty |title= (help)
  10. ^ Bertrand, R.M., Saczynski, J.S., Mezzacappa, C., Hulse, M., Ensrud, K., & Fredman, L. (2011). Caregiving and cognitive function in older women: Evidence for the healthy caregiver hypothesis. Journal of Aging and Health, 24(1), 48-66.
  11. ^ Susan C. Reinhard, Carol Levine, and Sarah Samis. "Home Alone: Family Caregivers Providing Complex Chronic Care". AARP and United Hospital Fund. p. 41. Retrieved 1 October 2012. 
  12. ^ [Montgomery, R., Rowe, J., & Kosloski, K. (2007). Handbook of gerontology: Evidence-based approaches to theory, practice, and policy. (pp. 426-430). Hoboken, NJ: John Wiley & Sons, Inc.]
  13. ^ [Vitaliano, P., Young, H., & Zhang, J. (2004). Is caregiving a risk factor for illness. Current Directions in Psychological Science, 13(1).]
  14. ^ [Sultz, H. A., & Young, K. M. (2011). Health care USA. (7th ed.). Sudbury, MA: Jones & Bartlett Publishers.]
  15. ^ Elliott, A.F., Burgio, L.D., & DeCoster, J. (2010). Enhancing caregiver health: Findings from the Resources for Enhancing Alzheimer's Caregiver Health II intervention. Journal of the American Geriatrics Society, 58, 30-37.
  16. ^ Donorfio, L.K.M., Vetter, R., & Vracevic, M. (2010). Effects of three caregiver interventions: Support, educational literature, and creative movement. Journal of Women and Aging, 22, 61-75.
  17. ^ Ayalon, Liat; Green, O. (2013). "Live-In Versus Live-Out Home Care in Israel: Satisfaction With Services and Caregivers' Outcomes.". Gerontologist. doi:10.1093/geront/gnt122. 
  18. ^ [2]

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