Family caregivers

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Family caregivers (also known as "family carers") are "relatives, friends, or neighbors who provide assistance related to an underlying physical or mental disability for at-home care delivery and assist in the activities of daily living (ADLs) who are unpaid and have no formal training to provide those services." [1]

Contents

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 disease 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] 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]

Family caregiver experience

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]

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. In addition to this, optimism significantly mediated some of the relationship between angry reaction and vitality. [12]

Taking care of the caregiver

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 [13] Other negative outcomes of being an informal primary caregiver 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 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. [14] 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. [15] 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 [16] 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. [17] 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 ongoing 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. [18]

It seems necessary to adapt treatments to caregivers' specific characteristics (e.g. their limited availability of time and their bueden experience). [19]

Signs of caregiver stress

Caregiver stress is the emotional and physical strain of care giving. [20] According to a UK-based study, almost two out of three carers of people with dementia feel lonely. Most of the carers in the study were family members of friends. [21] [22]

Avoiding caregiver burnout

Caregiver stress explodes when the caregiver can't get much of a break - whether it is emotional or physical, a needed break is what makes it possible for the caregiver to function.

Tips for avoiding burnout are to know the signs and have a plan in place to combat the burnout. Some signs:

Most caregiver stress can be avoided with a strategy to avoid it. Here are some tips:

National Family Caregivers Month

The United States President proclaims the month of November as National Family Caregivers Month. On October 31, 2017, President Donald Trump proclaimed the month as National Family Caregivers Month. [25] [26] [27]

See also

Related Research Articles

<span class="mw-page-title-main">Dementia</span> Long-term brain disorders causing impaired memory, thinking and behavior

Dementia is a syndrome associated with many neurodegenerative diseases, characterized by a general decline in cognitive abilities that affects a person's ability to perform everyday activities. This typically involves problems with memory, thinking, behavior, and motor control. Aside from memory impairment and a disruption in thought patterns, the most common symptoms of dementia include emotional problems, difficulties with language, and decreased motivation. The symptoms may be described as occurring in a continuum over several stages. Dementia ultimately has a significant effect on the individual, their caregivers, and their social relationships in general. A diagnosis of dementia requires the observation of a change from a person's usual mental functioning and a greater cognitive decline than might be caused by the normal aging process.

<span class="mw-page-title-main">Elderly care</span> Care serving the needs of old people

Elderly care, or simply eldercare, serves the needs of old adults. It encompasses assisted living, adult daycare, long-term care, nursing homes, hospice care, and home care.

<span class="mw-page-title-main">Long-term care</span> Services for the elderly or those with chronic illness or disability

Long-term care (LTC) is a variety of services which help meet both the medical and non-medical needs of people with a chronic illness or disability who cannot care for themselves for long periods. Long-term care is focused on individualized and coordinated services that promote independence, maximize patients' quality of life, and meet patients' needs over a period of time.

<span class="mw-page-title-main">Adult daycare center</span>

An adult daycare center is typically a non-residential facility that supports the health, nutritional, social, and daily living needs of adults in a professionally staffed, group setting. These facilities provide adults with transitional care and short-term rehabilitation following hospital discharge. The majority of centers provide meals, meaningful activities, and general supervision. The care provided is often a social model or a medical model provided in order to improve participants health and guide their progress in the right direction. Demand for adult daycare centers is increasing with the need for assistance in old age or guidance to reintegrate into society after injury, illness or addiction, and accommodation to return to their former lives or improve upon their quality of life.

Respite care is planned or emergency temporary care provided to caregivers of a child or adult.

The Alzheimer Society of Ontario (ASO) is a care and research charity committed to helping people living with Alzheimer's disease and other dementias by:

<span class="mw-page-title-main">Caregiver</span> Person helping another with activities of daily living

A caregiver, carer or support worker is a paid or unpaid person who helps an individual with activities of daily living. Caregivers who are members of a care recipient's family or social network, and who may have no specific professional training, are often described as informal caregivers. Caregivers most commonly assist with impairments related to old age, disability, a disease, or a mental disorder.

<span class="mw-page-title-main">Reminiscence therapy</span> Intervention technique with brain-injured patients

Reminiscence therapy is used to counsel and support older people, and is an intervention technique with brain-injured patients and those who appear to have "Alzheimer's and other forms of cognitive disease."

Carers' rights are rights of unpaid carers or caregivers to public recognition and assistance in preventing and alleviating problems arising from caring for relatives or friends with disabilities. The carers' rights movement draws attention to issues of low income, social exclusion, damage to mental and physical health identified by research into unpaid caregiving. In social policy and campaigning the movement distinguishes such people's situation from that of paid careworkers, who in most developed countries have the benefit of legal employment protection and rights at work. With an increasingly ageing population in all developed societies, the role of carer has been increasingly recognized as an important one, both functionally and economically. Many organizations which provide support for persons with disabilities have developed various forms of support for carers/caregivers as well.

As populations age, caring for people with dementia has become more common. Elderly caregiving may consist of formal care and informal care. Formal care involves the services of community and medical partners, while informal care involves the support of family, friends, and local communities. In most mild-to-medium cases of dementia, the caregiver is a spouse or an adult child. Over a period of time, more professional care in the form of nursing and other supportive care may be required medically, whether at home or in a long-term care facility. There is evidence to show that case management can improve care for individuals with dementia and the experience of their caregivers. Furthermore, case management may reduce overall costs and institutional care in the medium term. Millions of people living in the United States take care of a friend or family member with Alzheimer’s disease or a related dementia.

<span class="mw-page-title-main">Family Caregiver Alliance</span> American nonprofit organization

Family Caregiver Alliance (FCA) is a national nonprofit caregiver support organization headquartered in San Francisco, California. FCA's purpose is to "improve the quality of life for caregivers and the people who receive their care."

A professional live-in caregiver provides personal care and assistance to individuals, including those suffering from chronic illness, Alzheimer's disease, and dementia, within the home setting. Typical duties of a live-in caregiver include meal planning and preparation, assistance with grooming, dressing and toileting, medication management, laundry and light housekeeping, and transportation/escorts to doctor's appointments or social engagements. Professional live-in caregivers are often provided by an outside agency, which may also coordinate their services with the client's preferred in-home health agency and other medical providers.

Wandering occurs when a person with dementia roams around and becomes lost or confused about their location. It is a common behavior that can cause great risk for the person, and is often the major priority for caregivers. It is estimated to be the most common form of disruption from people with dementia within institutions. Although it occurs in several types of dementia, wandering is especially common in people with Alzheimer's disease (AD). People with dementia often wander because they are stressed, looking for someone or something, attending to basic needs, engaging in past routines, or with visual-spatial problems. Other times, they may wander without aim at all.

Caregiver syndrome or caregiver stress is a condition that strongly manifests exhaustion, anger, rage, or guilt resulting from unrelieved caring for a chronically ill patient. This condition is not listed in the United States' Diagnostic and Statistical Manual of Mental Disorders, although the term is often used by many healthcare professionals in that country. The equivalent used in many other countries, the ICD-11, does include the condition.

An informal or primary caregiver is an individual in a cancer patient's life that provides unpaid assistance and cancer-related care. Caregiving is defined as the processing of assisting someone who can't care for themselves, which includes physical, mental, emotional, social, and spiritual needs. Due to the typically late onset of cancer, caregivers are often the spouses and/or children of patients, but may also be parents, other family members, or close friends. Taking care of family members at home is a complicated experience. The relationships involved constantly shift and change, in expected and unexpected ways. The expected or expected changes can negatively affect physical health, emotions, social life, and spiritual well-being of the caregiver. Informal caregivers are a major form of support for the cancer patient because they provide most care outside of the hospital environment. This support includes:

In the United States there are approximately 50 million people who are caring at home for family members including elderly parents, and spouses and children with disabilities and/or chronic illnesses. Without this home-care, most of these cared for would require permanent placement in institutions or health care facilities.

For patients with Alzheimer's disease, music therapy provides a beneficial interaction between a patient and an individualized musical regimen and has been shown to increase cognition and slow the deterioration of memory loss. Music therapy is a clinical and evidence-based intervention that involves music in some capacity and includes both a participant and a music therapist who have completed an accredited music therapy program.

Caregiving by country is the regional variation of caregiving practices as distinguished among countries.

Caregiver burden is the stress which is perceived by caregivers due to the home care situation. The subjective burden is considered to be one of the most important predictors of negative outcomes from the home care situation.

Jiska Cohen-Mansfield is the Igor Orenstein Chair for the Study of Geriatrics at Tel Aviv University Medical School and a professor at the Department of Health Promotion at the School of Public Health in the Sackler Medical Faculty at Tel Aviv University. She is the director of the Minerva Center for Interdisciplinary Study of End of Life at Tel-Aviv University.

References

  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. Archived from the original on 2011-09-02. Retrieved 2012-10-23.{{cite web}}: CS1 maint: multiple names: authors list (link)
  2. 1 2 Peter S. Arno (Fall 2006), Caregiving (presentation), NIH Care Coordination and the Caregiving Forum
  3. ↑ Alzheimer's Association. "2012 Alzheimer's Disease Facts and Figures" (PDF). Alzheimer’s & Dementia, Volume 8, Issue 2. Archived from the original (PDF) on 2013-05-17. Retrieved 2012-10-23.
  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; Sarah Samis. "Home Alone: Family Caregivers Providing Complex Chronic Care" (PDF). AARP and United Hospital Fund. p. 41. Retrieved 1 October 2012.
  7. ↑ "Almost One-Third of U.S. Adult Population Plays Caregiver Role in Hous..." AARP. 2010-03-13. Retrieved 2015-02-18.
  8. ↑ National Alliance for Caregiving and the United Hospital Fund (2005), Caregiving (presentation), National Alliance for Caregiving and the United Hospital Fund
  9. ↑ U.S. Department of Health and Human Services (2001), Caregiving (presentation), Rockville: Agency for Healthcare Research and Quality
  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; Sarah Samis. "Home Alone: Family Caregivers Providing Complex Chronic Care". AARP and United Hospital Fund. p. 41. Retrieved 1 October 2012.
  12. ↑ López, J.; Romero-Moreno, R.; Márquez-González, M.; Losada, A. (2015). "Anger and Health in Dementia Caregivers: Exploring the Mediation Effect of Optimism: Optimism Mediation". Stress and Health. 31 (2): 158–165. doi: 10.1002/smi.2539 . PMID   24123699.
  13. ↑ [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.]
  14. ↑ [Vitaliano, P., Young, H., & Zhang, J. (2004). Is caregiving a risk factor for illness. Current Directions in Psychological Science, 13(1).]
  15. ↑ [Sultz, H. A., & Young, K. M. (2011). Health care USA. (7th ed.). Sudbury, MA: Jones & Bartlett Publishers.]
  16. ↑ 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.
  17. ↑ 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.
  18. ↑ Ayalon, Liat; Green, O. (2013). "Live-In Versus Live-Out Home Care in Israel: Satisfaction With Services and Caregivers' Outcomes". Gerontologist. 55 (4): 628–642. doi: 10.1093/geront/gnt122 . PMID   24136990.
  19. ↑ López, Javier (January 2022). "More Is Not Always Better: Interventions for Caregivers of Older and Dependent Relatives". Journal of Clinical Medicine. 11 (11): 3010. doi: 10.3390/jcm11113010 . ISSN   2077-0383. PMC   9181828 . PMID   35683403.
  20. ↑ "Caregiver stress fact sheet". womenshealth.gov. Archived from the original on 2014-08-01. Retrieved 2015-02-18.
  21. ↑ "Most people caring for relatives with dementia experience loneliness". NIHR Evidence (Plain English summary). 2020-07-22. doi:10.3310/alert_40575. S2CID   243269845.
  22. ↑ Victor, Christina R.; Rippon, Isla; Quinn, Catherine; Nelis, Sharon M.; Martyr, Anthony; Hart, Nicola; Lamont, Ruth; Clare, Linda (2021-07-03). "The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme". Aging & Mental Health. 25 (7): 1232–1238. doi: 10.1080/13607863.2020.1753014 . hdl: 10454/17813 . ISSN   1360-7863. PMID   32306759. S2CID   216028843.
  23. ↑ Márquez-González, María; López, Javier; Romero-Moreno, Rosa; Losada, Andrés (2012). "Anger, Spiritual Meaning and Support from the Religious Community in Dementia Caregiving". Journal of Religion and Health. 51 (1): 179–186. doi:10.1007/s10943-010-9362-7. ISSN   0022-4197. PMID   20467814. S2CID   1906691.
  24. ↑ López, Javier; Crespo, María (2008). "Analysis of the efficacy of a psychotherapeutic program to improve the emotional status of caregivers of elderly dependent relatives". Aging & Mental Health. 12 (4): 451–461. doi:10.1080/13607860802224292. hdl: 10637/6749 . ISSN   1360-7863. PMID   18791892. S2CID   5504942.
  25. ↑ Office of the Press Secretary (October 31, 2017). "President Donald J. Trump Proclaims November 2017 as National Family Caregivers Month". whitehouse.gov . Washington, D.C.: White House. Archived from the original on November 1, 2017. Retrieved November 6, 2017.
  26. ↑ "2017 Health Observance Dates". National Hospice and Palliative Care Organization. Alexandria, Virginia : NHPCO, LLC. Retrieved November 6, 2017.
  27. ↑ "National Family Caregivers Month, 2017". Federal Register . Washington, D.C.: National Archives and Records Administration. October 31, 2017. Archived from the original on November 6, 2017. Retrieved November 6, 2017. Alt URL
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