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Caregiver syndrome or caregiver stress is a condition of exhaustion, anger, rage, or guilt that results from unrelieved caring for a chronically ill dependent.[1] The term is often used by health care professionals, but it is not listed in the Diagnostic and Statistical Manual of Mental Disorders. Almost 66 million Americans are providing care to those that are ill, aged, and/or disabled for an average of 39.2 hours per week. Over 13 million caregivers are also caring for their own children as well. Caregiver syndrome is acute when caring for an individual with behavioral difficulties, such as: fecal incontinence, memory issues, sleep problems, wandering (dementia), and aggression. Typical symptoms of the caregiver include: fatigue (medical), insomnia, stomach complaints, and so on with the most common symptom being Depression (mood). Roughly 70% of caregivers suffer from depression. Due to the deterioration (both physically and mentally) of these caregivers, health professionals have given this a name, Caregiver Syndrome. [2]

Symptoms of Chronic Stress

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Those who are providing care for a friend or family member with a long-term illness undergo what is known as chronic stress. Caregiving has been shown to have an impact on the immune system. It was found that caregivers to Alzheimer's patients were more depressed, and they showed lower life satisfaction than the comparison samples. The caregivers also had higher EBV antibody titres and lower percentages of T cells and TH cells.[3] Caregiving has also been shown to have adverse effects on wound repair.[4]

Symptoms include depression, anxiety, and anger. Chronic stress can create medical problems including high blood pressure, diabetes, and a compromised immune system.[5] The impact may reduce the caregiver's life expectancy by an average of seven years.

In severe cases of Alzheimer's, caregivers may also take on the symptoms of the patients of whom they are taking care of. An example of this is progressive memory loss. Caregiver syndrome affects people at any age. For example, elderly caregivers are at a 63 percent higher risk of mortality than noncaregivers who are in the same age group. This trend may be due to elevated levels of stress hormones circulating throughout the body. These levels are similar to someone with PTSD. Due to the fact that caregivers have to be so immersed in their roles, they often have to neglect their own health. They are experiencing high amounts of stress along with grief since the health of their loved one is declining. Since their roles are changing from a partnership or mother/daughter, mother/son, etc. relationship to a caregiver and patient relationship, caregivers are turning to online forums such as the Alzheimer's Association for support. This change is difficult for many people to make, causing them to experience anger, resentment, and guilt (emotion). It is difficult to provide quality care in this state of stress. [5]

Caregivers are at risk for adverse effects on their health, due to emotional distress.[6] Therefore, effective coping strategies can help with this. Even after caregiving has terminated, these stressors can have long lasting effects on the caregiver's body due to these immune alterations. [7]

Since caregiving can further erode the caregiver's own health,[8][9] many studies are being done to assess the risks that a caregiver poses when they assume this job and it's effects of their immune functioning,[10][11] endocrine functioning,[12] risk for depression,[13] poor quality of sleep,[14] long-term changes in stress responses,[15] Cardiovascular diseases,[16] an increased risk of infectious disease, and even death.[17][18]. Resentment from the patient is what may lead to the depression and distress typically seen in caregivers.[19] This anxiety and depression can then lead back into the health of the caregiver.[20] Caregivers fare better when they have active coping skills,[21] such as these coping interventions:

Nearly 15 million Americans provide care that is unpaid to a person living with Alzheimer's Disease or Dementia. Alzheimer's Disease and Dementia are often used as interchangeable words, but they aren't the same thing. Increasing evidence has shown that changes in the brain occur 15 years prior to when symptoms are first demonstrated in a person with Alzheimer's Disease. This is often called a "family disease", because the stress associated with watching a loved one decline rapidly in their health affects everyone involved with their care. In order to maintain their own well being, caregivers need to focus on their own needs. They need to take time for their own health, and get the appropriate support that they need such as respite from their caregiving duties. Through training, caregivers can learn how to handle the behaviors that are challenging them, and improve their own communication skills. The most important thing the caregiver can do is keep the person with Alzheimer's safe. Research has shown that caregivers experience lower stress and better health when they learn skills through this caregiving training and participate in support groups. Participating in these groups allows caregivers to care for their family members longer in their homes. [22]

At risk populations

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The number of people at risk is significant. The American Academy of Geriatric Psychiatrists reports one out of four American families provide care for a family member over the age of 50. By 2030, the U.S. Census Bureau estimates a population of 71 million Americans over 65.[5] In the U.K., over 450,000 dementia patients are cared for at home.

The American Academy of Family Physicians and the National Center on Caregiving both believe all caregivers should be screened for stress and depression and recommend providing caregivers with their own resources to help them cope.[5]

Since family members most often assume the primary caregiver role, these strains fall upon them. Care for those that are chronically ill is irregular, so there are not many facilities that can provide adequate care. This caregiving role is more commonly assumed by women than men. Since there are some illnesses that create a more intense need for caregiving, the caregiver is responsible for almost every aspect in the patient's life. One of the positive aspects of caregiving for a loved one though is that it can improve their quality of life but when the caregiver is depleted of confidence, the recovery may be fostered.[23]

Caring for those with PTSD

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Caregiving for military service members, who have experienced a traumatic brain injury or PTSD can be very challenging as well. On April 21, 2010, the House passed what is known as the "Caregivers and Veterans Omnibus Health Services Act of 2010". This act recognizes the importance of caregivers who are caring for Veterans, and established a program of assistance for them with benefits including covering counseling and mental health services under the Department of Veterans Affairs benefits. [24]

According to a November 2010 National Alliance for Caregiving study, 68 percent of caregivers for veterans had high emotional stress, 40 percent had high physical strain, 7 percent of caregivers stopped working or they took an early retirement, and 50 percent experienced high financial hardships. [24]

Questions clinicians may ask about Caregiver Syndrome

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Questions to determine if caregiving is taking it's toll on you:

  1. Do you take care of someone in your family with a chronic medical illness or dementia?
  2. Do you take care of a child?
  3. Have you felt guilt, anger, or depression?
  4. Since taking on the responsibility of caregiving, has your health deteriorated?

If you answered yes to any one of these, you may be suffering from caregiver stress.[5]

Do any of these quotes describe how you feel as a caregiver?

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  1. "I'm like a pot ready to boil over."
  2. "I used to go out and now I am a prisoner in my own home."
  3. "I feel like I am out of control."

If you answered yes to any of these statements, you may be suffering from caregiver stress.[25]

How do you respond to the stressors of caregiving?

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You need to determine how you respond to stressors of caregiving by agreeing or disagreeing with the following statements. When I am stressed out because of my caregiving duties, I:

  • am blue, sad, or downhearted
  • have more physical aches and pains
  • isolate myself from other people
  • drink more alcoholic beverages or take more medications
  • am pressured by responsibilities to the person I am caring for and also to my family members
  • question my ability to provide care to my loved one
  • am unable to eat or may eat excessively

If you checked any of these statements, you may be at a point where your health is suffering due to caregiving. [25]

Issues in Health Care

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Since this term, "Caregiver syndrome" is widely used among physicians, but isn't mentioned in the Diagnostic and Statistical Manual of Mental Disorders or in medical literature - physicians aren't sure how to approach the issues that arise with this syndrome. Therefore, this isn't addressed frequently. In a survey given by the American Academy of Family Physicians, they found that fewer than 50 percent of caregivers were asked by their doctors whether or not they were experiencing caregiver stress. If this was listed in the DSM with an official diagnosis, it could possibly stigmatize those that have it. Many believe it would be beneficial for this to receive a clinical name though, so caregivers would be able to receive the appropriate resources they they need. This would encourage health care professionals to develop better strategies for treatment of Caregiver Syndrome, as well as requiring health insurance agencies to pay for appropriate treatment. Ways to improve this syndrome are agreed upon by experts and include the following suggestions:

  • Expanding the support system for the caregiver
  • Finding help in various sources for caregiver tasks
  • Educating caregivers [5]

Where to find help

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Services that may be helpful to you include:

  • health services in the home
  • companion or chore services
  • day care centers for adults
  • respite care, time out at nursing homes, or assisted living facilities
  • counseling
  • legal advice
  • money management
  • support groups
  • educational programs[25]

REACH Program

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The Resources for Enhancing Alzheimer's Caregiver Health (REACH) Project was created in 1995. This project was designed to enhance family caregiving for those who were taking care of relatives that have Alzheimer's disease and other related dementia. (ADRD) This program includes:

  • Support groups
  • Behavioral skills training programs
  • Family-based systems interventions

This program was designed specifically for people who are caring for a loved one with Alzheimer's Disease or Dementia at home, and makes it possible for those with dementia to live in the own homes longer by addressing these problems of caregiver health that force the caregiver to move their loved ones to facilities. If they can manage the challenges that come along with caregiving better, both will benefit from this. Special one-on-one training is provided for the caregiver, as well as counseling. This allows them to be more effective in their caregiving roles. They receive help directly from dementia care specialists who work with the client on an individual basis to find solutions to problems such as:

  • Caregiver stress
  • Challenging behaviors
  • Home safety
  • Depression
  • Self care
  • Social support[26]

This project began with two studies that were sponsored by the National Institute on Aging and the National Institute of Nursing Research. There was a six month intervention that was designed to ease caregiver stress with the main focus being on education, support, and skills building. The families were taught how to reduce stress, solve problems, and manage the difficult behaviors of their family members. In order to develop coping skills, role playing was used. The caregivers were also provided with a "caregiver notebook" that was written to discuss topics ranging from physical care of the person with Alzheimer's to emotional and communication issues. The benefit of this program is that it's tailored to whatever the families need help with the most, and is made for caregivers who are highly stressed. Since about 80% of care of those with dementia is provided by a family member, these family members lack the necessary skills to deal with the troubling behaviors associated with dementia, as well as their own stress. Because of this, the family member with dementia is less likely to be able to stay at home.

If caregiving is cognitively reappraised, it can be viewed as a positive aspect of the caregivers' life. If this is viewed as an extension of a relationship that is long lasting and reciprocal, caregivers are able to experience satisfaction in their work as well as enhanced self esteem due to the fact that they're helping a loved one. The most beneficial part of this project for the caregiver is that their health (both physically and mentally) can be maintained. This program found that caregivers to those with Dementia felt good about themselves, useful, and needed. In turn, they could appreciate their own lives more. They developed an attitude toward life that was positive, and strengthened their relationships with others around them. [27]

Findings from this study showed improvements in the caregivers in many areas. They reported less burden and depression, as well as having an improved emotional well-being overall. They reported gains in the areas of self care as well as healthy behaviors, social support, and management of problem behaviors that were on the part of their loved ones with Alzheimer's disease. They were able to have an hour of time that was not taken up with duties of caregiving. Plus, the cost was relatively cheap - about $5 a day/caregiver. [28]

Benefits of Caregiving

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Caregiving can actually provide a health advantage as well for some caregivers. Caregivers maintained higher physical performance when compared to non-caregivers. They declined less in tasks than the low-intensity caregivers and non-caregivers such as: walking pace, grip strength, and the speed with which they could rise from a chair. Caregivers also did significantly better on memory tasks than did non-caregivers over a 2 year time frame. Caregivers scored at the level of someone 10 years younger than them, although both groups (caregivers vs. non-caregivers) were both in their eighties.[29]

While this role brings with it high costs, high rewards are also there too. This is known as "Caregiver gain". These rewards are emotional, psychological, and spiritual such as:

  • Growing confidence in one's ability
  • Feelings of personal satisfaction
  • Increased family closeness[29]

Women who become caregivers are healthy enough to take on the task, therefore it makes sense that they'd be stronger than their non-caregiver counterparts, and remain stronger than them. The demands of caregiving cause caregivers to move around a lot, and stay on their feet. Therefore, exercise can improve both your physical health and cognition. The complex thought required by caregiving can ward off cognitive decline. This includes activities such as:

  • Monitoring medications
  • Scheduling
  • Financial responsibilities[29]

Other benefits mentioned by caregivers are that it gives their life meaning, and produces pride in their success as a caregiver. They are also able to give back to someone else. It has also been noted that benefit-finding can be an important way of dealing with stress. [30] The Perceived Benefits of Caregiving scale includes 11 items with questions such as, "Has caregiving given more meaning to your life?" and "Has caregiving made you feel important?" There was an alpha coefficient of 0.7 for this scale.[31] These benefits of caregiving have been found to be associated with improved caregiver adaptation to those who are caring for someone with dementia, end of life caregiving, and bereavement.[32][33] A study done with dementia caregivers showed that finding the benefits in caregiving predicted a better response to a caregiver intervention over a time period of 12 months.[34]

References

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  1. ^ Christine Anne Piesyk (2009-08-23). "Caregiver Syndrome: Reality for many caregivers dealing with Dementia". Clarksvilleonline.com. Retrieved 2009-11-05.
  2. ^ Midnight Sun Homecare Inc. "Caregiver Stress Syndrome: Let's Start Talking About it". midnightsuncare.com. Retrieved 2013-3-7. {{cite web}}: Check date values in: |accessdate= (help)
  3. ^ Esterling, B. A., Kiecolt-Glaser, J. K., & Glaser, R. (1996). Psychosocial modulation for cytokine-induced natural killer cell activity in older adults. Psychosomatic Medicine, 58, 264-272.
  4. ^ Kiecolt-Glaser, J. K., Marucha, P. T., Malarkey, W. B., Mercado, A. M., & Glaser, R. (1995). Slowing of wound healing by psychological stress. Lancet, 346, 1194-1196.
  5. ^ a b c d e f Andree LeRoy. "Exhaustion, anger of caregiving get a name". CNN.com. Turner Broadcasting System, Inc. Retrieved 2013-2-25. {{cite web}}: Check date values in: |accessdate= (help) Cite error: The named reference "CNN" was defined multiple times with different content (see the help page).
  6. ^ Scalan, J. M., Vitaliano, P. P., Zhang, J., Savage, M., & Ochs, H. D. (2001) Lymphocyte proliferation is associated with gender, caregiving, and psychosocial variables in older adults. Journal of Behavioral Medicine, 24, 537-559.
  7. ^ Esterling, B. A., Kiecolt-Glaser, J. K., Bodnar, J. C., & Glaser, R. (1994). Chronic stress, social support, and persistant alterations in the natural killer cell response to cytokines in older adults. Health Psychology, 13, 291-298.
  8. ^ Gallagher, S., Phillips, A. C., Drayson, M. T., & Carroll, D. (2009). Caregiving for children with developmental disabilities is associated with a poor antibody response to influenza vaccination. Psychosomatic Medicine, 71 341-344.
  9. ^ Von Kaenel, R., Dimsdale, J. E., Patternson, T. L., & Grant, I. (2003). Acute pro-coagulant stress response as a dynamic measure of allostatic load in Alzheimer's Caregivers. Annals of Behavioral Medicine, 26, 42-48.
  10. ^ Li, J., Cowden, L. G., King, J. D., Briles, D. A., Schroeder, H. W., Stevens, A. B., et al. (2007). Effects of chronic stress and interleukin-10 gene polymorphism on antibody response to tetanus vaccine in family caregivers of patients with Alzheimer's Disease. Psychosomatic Medicine, 69, 551-559.
  11. ^ Redwine, L., Mills, P. J., Sada, M., Dimsdale, J., Patterson, T., & Grant, I. (2004). Differential immune cell chemotaxis responses to acute psychological stress in Alzheimer's caregivers compared to non-caregiver controls. Psychosomatic Medicine, 66, 770-775.
  12. ^ Mausbach, D. T., Dimsdale, J. E., Ziegler, M. G., Mills, P. J., Ancoli-Israel, S., Patterson, T. L., et al. (2005). Depressive symptoms predict norepinephrine response to a psychological stressor task in Alzheimer's caregivers. Psychosomatic Medicine, 67, 638-642.
  13. ^ Mintzer, J. E., Robert, M. P., Loewenstein, D., Gamez, E., Millor, A., Quinteros, R., et al. (1992). Daughters caregiving for Hispanic and non-Hispanic Alzheimer patients: Does ethnicity make a difference? Community Mental Health Journal, 28, 293-303.
  14. ^ Brummett, B. H., Babyak, M. A., Siegler, I. C., Vitaliano, P. P., Ballard, E. L., Gwyther, L. P., et al. (2006). Associations among perceptions of social support, negative affect, and quality of sleep in caregivers and noncaregivers. Health Psychology, 25, 220-225.
  15. ^ Grant, L., Adler, K. A., Patterson, T. L., Dimsdale, J. E., Zeigler, M. G., & Irwin, M. R., (2002). Health consequences of Alzheimer's caregiving transitions: Effects of placement and bereavement. Psychosomatic Medicine, 64, 477-486.
  16. ^ Mausbach, B. T., Patterson, T. L. Rabinowitz, Y. G., Grant, L., & Schulz, R. (2007). Depression and distress predict time to cardiovascular disease in dementia caregivers. Health Psychology, 26, 539-544.
  17. ^ Brummett, B. H., Siegler, I. C., Rohe, W. M., Barefoot, J. C., Vitaliano, P. P., Surwit, R. S., et al. (2005). Neighborhood characteristics moderate effects of caregiving on glucose functioning. Psychosomatic Medicine, 67, 752-758.
  18. ^ Kim J., Knight, B. G., & Flynn Longmire, C. V. (2007). The role of familism in stress and coping processes among African America and White dementia caregivers: Effects on mental and physical health. Health Psychology, 26, 564-576.
  19. ^ Newsom, J. T., & Schulz, R. (1998). Caregiving from the recipient's perspective: Negative Reactions to being helped. Health Psychology, 17, 172-181.
  20. ^ Shewick, R. M., Richards, J. S., & Elliot, T. R. (1998). Dynamic processes in health outcomes among caregivers of patients with spinal cord injuries. Health Psychology, 17, 125-129.
  21. ^ Aschbacher, K., Patterson, T. L., von Kanel, R., Dimsdale, J. E., Mills, P. J., Adler, K. A., et al. (2005). Coping processes and hemostatic reactivity to acute stress in dementia caregivers. Psychosomatic Medicine, 67, 964-971.
  22. ^ Family Caregiver Alliance. "Alzheimer's Disease & Caregiving". caregiver.org. Retrieved 2013-2-27. {{cite web}}: Check date values in: |accessdate= (help)
  23. ^ Molloy, G. J., Jonhston, M., Johnston, D. W., Pollard, B., Morrison, V., Bonetti, D., et al. (2008). Spousal caregiver confidence and recovery from ambulatory activity limitations in stroke survivors. Health Psychology, 27, 286-290.
  24. ^ a b Health Net. "Care for Caregivers". hnfs.net. Retrieved 2013-2-27. {{cite web}}: Check date values in: |accessdate= (help)
  25. ^ a b c Alzheimer’s Association, Cleveland Area Chapter. "A Guide for Individuals Who Care for Persons with Dementia: Preventing Stress from Becoming Harmful" (PDF). wrgec.org. Retrieved 2013-2-25. {{cite web}}: Check date values in: |accessdate= (help)
  26. ^ Alzheimer's Association. "REACH". alz.org. Retrieved 2013-4-3. {{cite web}}: Check date values in: |accessdate= (help); Cite has empty unknown parameter: |1= (help)
  27. ^ Tarlow, B. J., Wisniewski, S. H., Belle, M. R., Ory, M. G., & Gallagher-Thompson, D. (2004) Positive Aspects of Caregiving: Contributions of the REACH Project to the Development of New Measures. Research on Aging, 2004 26, 429. DOI: 10.1177/0164027504264493
  28. ^ US Department of Veterans Affairs. "REACHING out to Alzheimer Families". va.gov. Retrieved 2013-4-3. {{cite web}}: Check date values in: |accessdate= (help)
  29. ^ a b c Paula Span. "Caregiving's Hidden Benefits". The New York Times. Retrieved 2013-4-3. {{cite web}}: Check date values in: |accessdate= (help)
  30. ^ Folkman, S., & Moskowitz, J. T. (2000). Positive affect and the other side of coping. American Psychologist, 55, 647-654.
  31. ^ Beach, S. R., Schulz, J. L., Yee, J. L., & Jackson, S. (2000). Negative and positive health effects of caring for a disabled spouse: longitudinal findings from the Caregiver Health Effects Study. Psychology and Aging, 15, 42–53.
  32. ^ Haley, W.E., LaMonde, L.A., Han, B., Burton, A.M., & Schonwetter, R. (2003). Predictors of depression and life satisfaction among spousal caregivers in hospice: Application of a stress process model. Journal of Palliative Medicine, 6, 215-224.
  33. ^ Boerner, K., Schulz, R., & Horowitz, A. (2004). Positive aspects of caregiving and adaptation to bereavement. Psychology and Aging, 19, 668-675.
  34. ^ Hilgeman, M. M., Allen, R. S., DeCoster, J., & Burgio, L.D. (2007). Positive aspects of caregiving as a moderator of treatment outcome over 12 months. Psychology and Aging, 22, 361–371.

Category:Abnormal Psychology Category:Health Psychology


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