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Caregiving for the Elderly One of the most dramatic successes of modern life has been the increase in life expectancy. With profound decreases in child and adult mortality, most people can expect to grow old. For the majority, the "golden years" are just that - a time during which they can enjoy the fruits of their lifetime's labors. However, a substantial minority of older people develop chronic illnesses and disabilities, for which they require regular assistance. What is Caregiving? Caregiving, simply, is the regular provision of care to someone. The nature of care depends on the specific needs of the recipient. A frail older person, for example, may need help with household tasks such as cleaning, preparing meals, and arranging medical services or transportation. Those who are more disabled may need assistance with daily living activities such as dressing, bathing or toileting. Older people with memory deficits due to Alzheimer's disease or similar disorders require help with thought-related tasks: making decisions, managing money, and getting from place to place. Older people receiving care also have emotional needs as a natural consequence of chronic disability; they may become fearful, depressed or angry. At times, they may take these feelings out on the people closest to them - their caregivers. Who are Caregivers? It has been estimated that between 2.2 - 3 million people in the country provide regular assistance to a frail older person. Family caregivers are a varied group. Many are husbands or wives of the older person and are, themselves, often limited in the activities they can perform. Another large group of caregivers are the children of older people, particularly daughters and daughters-in-law, and, on occasion, sons. Caregivers also include other relatives - sisters and brothers, nieces, nephews, cousins and grandchildren - as well as friends and acquaintances. As a whole, family members traditionally have provided about 80% of homecare for the impaired elderly. Involvement in assisting the frail elderly can range from a few minutes a day to around-the-clock care. In most families, one person becomes the primary caregiver, usually the individual who has the most responsibility for organizing and providing assistance to the care recipient. Primary caregivers usually bear more of the burden of providing care, but they also have the greatest say over how things are done. Secondary caregivers are other relatives or friends who lend, or who could potentially lend, additional assistance. Stresses and Rewards of Caregiving While families have always helped their elders, both the number of people needing assistance and the amount of help they require is unprecedented. As a consequence, the demands and stresses of caregiving can become difficult to manager and, on occasion, may become overwhelming. Caregiving is a job, with tasks, responsibilities and the potential for stresses and rewards. Caregivers can function best at their jobs if they can prepare by learning about their relative's condition and about the strategies for care and care alternatives available to them. Professionals working with family caregivers can help them experience the positive opportunities caregiving offers, fulfilling a sense of obligation and returning the affection and caring they may have received over the years. Like any other stressful situation, caregiving can have adverse consequences for the caregiver's own physical or emotional health. The physical demands on caregivers can exacerbate health problems or make them vulnerable to new illnesses and problems. The emotional demands of caregiving can be considerable, resulting in feelings of sadness, depression, anxiety or anger. Research has found that as many as 40% of caregivers experience significant symptoms of depression. Anger is another common emotion, whether resulting from the care recipient's behavior, the absence of a relative's help, or the feeling of entrapment in the situation. Decreased social activity and impaired functional status are frequently reported. It is useful to distinguish between direct effects and ripple effects when considering caregiver stresses. Direct effects are the stresses resulting from providing assistance directly to the older person. Care tasks such as bathing or dressing may be physically difficult for the caretaker to perform, and the amount of care needed may be exhausting or time consuming. Furthermore, care can be emotionally draining, particularly when the recipient is emotionally upset or difficult to manage due to memory loss. Ripple effects, on the other hand, are the consequences of caregiving on other parts of the caregiver's life. Caregivers may feel torn between responsibilities to the care recipient and to other family members; they may have to relinquish retirement plans, work, friendships, or other personal interests or activities. For many people, these ripple effects are more difficult and stressful than their actual care activities. While any caregiving situation can be stressful, particular groups of caregivers have special concerns. Only children, for example, often must assume alone all the responsibilities for their parents. Another group includes caregivers who must balance employment with caregiving, coping with competing demands from work, caregiving and their other family and social obligations, often without the time and energy to meet all of these responsibilities. Husbands or wives in a second marriage must confront the potential for misunderstandings between step-parents and step-children about financial arrangements and care provision. Finally, another special group of caregivers are those individuals who, in addition to aiding an older relative, are also caring for another disabled family member. However, not everything associated with caregiving is stressful. Many caregivers gain a sense of satisfaction from a job well done, or because they are fulfilling their duty or obligation to the care recipient. Support and encouragement from other people can also buffer the caregiver from stress. Research has shown repeatedly that receiving emotional support from family and friends provides an important buffer against the stress and burden of caregiving. It is the social contact, more than any tangible care they may provide that is important. Sharing information about the patient's condition and the disease can help to bring family more into play. Use of professionals (physicians, nurses, clergy) to draw the family into more supportive positions can be effective. Finally, an important part of being a good caregiver is taking care of one's self. Although many caregivers have described themselves as feeling both physically and emotionally better as the result of successfully managing caregiving challenges, many also feel overwhelmed. Feelings of emotional distress or physical symptoms should be viewed as signals that caregivers need to take better care of themselves. This will benefit caregiver and care recipient alike. Getting help Various sources of information exist to help families learn more about their relative's condition and about different ways of providing care. With this information, families can be better prepared for the everyday issues they confront, as well as for the stresses that lie ahead. At least several kinds of help are useful for families taking care of their chronically ill relatives: information, support groups, counseling, legal and financial planning, and service programs. Information Support Groups Counseling Legal and Financial Planning Service Programs In respite care a nurse's aide or other trained person provides help in the older person's home, relieving the caregiver for a period of time or assisting with specific activities, such as dressing or bathing. Overnight respite care is offered in some communities; for example, a hospital or nursing home may take the older person for a designated period of time to give the primary caregiver a break. Home health care is available to meet specific needs, including skilled care, personal care and homemaker chore care. While families may be reluctant to consider institutional care, it may become necessary if the care needs of the older person become too great for the family to manage. For caregivers assisting a seriously disabled person, especially when the person's condition is deteriorating, it is important to give consideration to long-term care, including residential and nursing home care. The decision to place a person in a 24-hour care facility is one of the most difficult faced by caregivers, but when the demands being placed upon them become more than they can handle, it may be time to consider placement. As with most difficult decisions, it is better to investigate options and make plans before a crisis point is reached, for in some areas, care facilities will have long waiting lists. For more information about the types of services available in a particular community, contact local support groups, area agencies on aging or the blue pages of the telephone directory. Developed by Mental Disorders of the Aging Research Branch, National
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