Women and Aging: Bearing the Burden of Long-Term Care
Committee on Health, Education, Labor, and Pensions and the Special Committee on Aging United States Senate Joint Hearing
Statement for the Record Submitted by the American Association for Geriatric Psychiatry
2/6/2002
The American Association for Geriatric Psychiatry (AAGP) is pleased to have the opportunity to submit a statement for the record on women and caregiving. AAGP is a professional membership organization dedicated to promoting the mental health and well-being of older people and improving the care of those with late-life mental disorders. AAGP’s membership consists of approximately 2,000 geriatric psychiatrists, as well as other health professionals who focus on the mental health problems faced by senior citizens.
AAGP members have a particular interest in this issue because of our work with patients with Alzheimer’s disease and related dementias who require significant care in very difficult circumstances. The primary caregivers for these patients are often their wives, sisters, or daughters – and professional caregivers for these patients are generally women, as well. The work that geriatric psychiatrists do with these patients invariably involves work with their family and professional caregivers.
Below are some statistics on the scope of the problem:
* It is estimated that four million Americans currently suffer from Alzheimer’s or a related form of dementia. Nearly 10 percent of all people over age 65 and up to half of those over age 85 are thought to have Alzheimer’s or another form of dementia.
* Approximately 19 million Americans have a family member with Alzheimer's. Approximately 360,000 new cases occur each year. However, these numbers are increasing as the population of older adults increases. It is estimated that 14 million Americans will have Alzheimer’s by the middle of this century.
* During the course of the illness, patients suffer progressive loss of cognitive function, and become unable to perform simple activities of daily living. They eventually lose the ability to care for themselves and become dependent on caregivers for such basic tasks as dressing, bathing, toileting, and feeding.
* A person with Alzheimer’s lives an average of eight years after initial diagnosis and may live as many as 20 years after the onset of symptoms. The length of time people live with Alzheimer’s disease and its associated disability has profound emotional and financial impact on their families and caregivers.
* People with Alzheimer’s tend to live with their families until the most advanced stages of the disease – slightly more than half of them are at home at a given time. However, many families find that at some point in time, they need to place elderly relatives with advanced Alzheimer's in a nursing home. Today, it is estimated that half of all nursing home patients suffer from Alzheimer’s. The per patient cost for nursing home care averages $42,000 per year, but can exceed $70,000 per year.
AAGP’s educational mission engendered its recent Initiative on Alzheimer’s Disease and Related Disorders, designed to educate consumers, policymakers, physicians and other health care professionals about the diagnosis and treatment of late-life dementia and its associated caregiving and policy implications. Of the many demanding and important roles that caregivers undertake, caring for older adults with Alzheimer’s disease and other dementing disorders is one of the most devastating and dreaded tasks in our society. As the “baby boom” population approaches old age, the numbers of Americans who need such care will increase substantially. And it is women who most often provide the care.
Alzheimer’s disease is a shared condition affecting not only the patient but also the patient’s family. Often, a close family member bears much of the responsibility for ensuring that the patient’s treatment plan is implemented, and that the patient’s basic needs are met. Such responsibility can take an enormous emotional and physical toll on the family member, especially when coupled with the psychological distress associated with watching a loved one deteriorate.
As the disease progresses, the person with Alzheimer’s disease becomes increasingly dependent upon caregivers. In addition to the loss of cognitive ability, there is a loss of self experienced by the patient. Family members must cope with the associated personality changes, as well as disorders of mood and behavior, all of which can be profoundly disturbing. For this reason, the caregiver of the Alzheimer’s disease patient often is referred to as the hidden, or second, patient who suffers from the disease.
One of the roles of a patient’s physician is to help provide much needed support to family and caregivers by explaining the diagnosis and providing information about the expected course of the illness, available treatments, and prognosis. Physicians can also help ensure that problem behaviors and other associated psychiatric symptoms (that are common manifestations or complications of dementia) are being managed as well as possible and provide referral for psychiatric care and other psychosocial support when necessary. The physician must facilitate ongoing discussion about the changing needs of both the patient and caregiver, assessing whether and how these needs are being met, providing information about available resources in the health system and the community, and arranging appropriate referrals.
Alzheimer’s disease can create a significant disruption in a family. Roles and responsibilities change, and people handle these major adjustments differently. Not surprisingly, conflicts may arise. Some family members will be eager to understand the patient’s disease, and some may deny the problem.
Family caregivers of Alzheimer’s disease patients experience a range of natural emotions in response to the disease. These feelings, which may include frustration, anger, fear and sadness, as well as concerns about their own memory lapses, can be managed by talking with their physician or by referral for counseling if necessary.
Beyond natural reactions to the disease, family and caregivers of Alzheimer’s disease patients are at risk for developing serious physical, emotional and behavioral health problems. Therefore, it is important for caregivers and their family members to be aware of, and watch for, symptoms such as anxiety, depression, social withdrawal, sleeplessness, exhaustion, impaired concentration, irritability, anger, and even abusive behavior toward the Alzheimer patient. When these symptoms occur, the caregiver should discuss them with their physician, and should undergo evaluation to determine if treatment is needed.
Numerous studies have linked caregiving of patients with dementia to psychiatric problems and higher rates of psychotropic drug use. Diagnostic interviews also reveal a higher prevalence of anxiety and clinical depression among caregivers than in control groups and the general population. Studies indicate that a substantial percentage of caregivers – as many as fifty percent – experience depressive symptoms severe enough to warrant intervention and treatment.
Spouse caregivers often suffer most. Those with milder depressions may benefit significantly from long term social support. When social support mechanisms are insufficient to alleviate the depression, antidepressant medication may be helpful. In fact, treating even mild depression can make a remarkable difference to both the caregiver and the primary patient. For caregivers with major depression, antidepressant medication is often indicated. Caregivers who develop major depression or problems with alcohol or drug abuse may become so ill that they are unable to continue caring for the Alzheimer patient.
When these conditions occur, psychiatric treatment and other psychosocial interventions can improve the quality of life and well-being for family, caregivers and patients. It is important that appropriate treatment for caregivers be available – both for their own and the patients’ benefit.
It is important to recognize that depression associated with, or brought on by caregiving, is not necessarily alleviated when the patient dies. Caregiver follow-up is often necessary, and referral for bereavement counseling or supportive therapy may be helpful. Some studies indicate that men tend to experience a worsening of depression after the death of a spouse with Alzheimer’s disease, while women may improve.
Sustaining the health and stamina of caregivers should be part of Alzheimer’s disease patient care. Studies have demonstrated that emotional support from family and friends, self-confidence, and help wit household chores all were found to positively influence caregivers and protect against stress. Use of community support services and other resources such as respite care can be extremely helpful, and formal caregiver support programs have been shown to significantly delay nursing home placement of Alzheimer patients. In addition, psychosocial and behavioral interventions for both patients and caregivers can help ease caregiver burden and optimize patient care – while failure to receive appropriate treatment can hasten caregiver burnout and lead to premature institutionalization of the patient. The relationship between Alzheimer’s disease and the family system is reciprocal: the well-being of the family and caregivers depends on the well-being of the patient, and vice versa. Therefore, a coordinated, effective treatment program that successfully manages the patient’s behavioral and mood disorders can have a substantial positive effect on the well-being of all of family members. Conversely, preserving and promoting the health and well-being of family caregivers is essential to maintaining the patient’s well-being.
The behavioral and emotional conditions commonly associated with Alzheimer’s disease caregiving tend to respond robustly to a combination of traditional psychotherapies and supportive interventions. Over time, attention to the caregiver’s mental and physical health can improve quality of life for the patient, the caregiver, and their extended family.
AAGP believes that it is crucial for all stakeholders in our health care system recognize the extraordinary demands made upon caregivers of patients with dementia. There are a variety of public policies that should be adopted, expanded, or strengthened to address the multiple issues at stake.
First, the ultimate relief for caregivers will come from the eradication of Alzheimer’s disease. We know now enough to understand that such a remarkable feat may be attainable in the foreseeable future. We must assure continued research into the causes, treatment, and, ultimately, prevention of Alzheimer’s disease and other dementias.
Second, until a cure is found, the treatment of these patients requires that their caregivers be supported and, when necessary, treated. Programs that provide community support services (e.g., Area Agencies on Aging and other sources of public funding for home health and respite care services) and those that provide coverage for health care services (e.g., Medicare reimbursement for health and mental health services), must recognize that Alzheimer patients cannot be treated adequately unless their families and caregivers also have access to the treatment and the support that they need. Unfortunately, in some situations, Medicare carriers deny coverage for mental health services for Alzheimer patients when those services focus on helping the caregiver to manage behavioral complications. Ideally, care of patients and caregivers should be integrated and comprehensive. An elderly wife caring for her husband with progressive dementia that makes him more and more helpless must have support for her own physical, emotional, and social needs. A younger woman caring for her mother may be physically more robust but may also have a job as well as caregiver responsibilities for her young family. These women, who care for their parents, and who, in turn, are parents caring for their own children, define the “sandwich generation.” If appropriate support and services are not present, these women will be exposed to more health problems and suffering in an already agonizing situation, with the attendant risk of premature institutionalization of their beloved family members, adding further cost and distress.
Our society understandably has an aversion to taking a hard and honest look at these most difficult circumstances, but, in fact, more and more Americans will face these problems in the next few years, even as hundreds of thousands do today. AAGP commends the Special Committee on Aging and the HELP Subcommittee on Aging for focusing attention on the complex issues confronted by women who undertake this kind of care. These women are a vital resource within our families and communities, and we cannot afford to ignore the high risks they face. AAGP looks forward to working with Senators from both panels to develop initiatives – in both the private and public sectors of our health care system – to support these women, ease their burden, and preserve their health.
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