Aging and Long Term Care
1. Identify the physical changes that are associated with aging.
2. Describe common psychological disorders found in aging individuals.
3. Identify signs of aging that may require additional care.
4. Describe the types of care available to aging adults.
5. Describe the unique issues and concerns associated with substance abuse and aging.
6. Describe intervention techniques that minimize trauma to elderly patients and their families.
CEUs Credits Hours (Units): 10
Fee: $ 80
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Aging and Long Term Care Ceus - Page 2
Until a person is in their fourth or fifth decade of life, the finality of aging may not mean a lot, even though it's a lifelong process. Childhood, adolescence and young adulthood are typically filled with feelings of immortality. It's often only when a person starts to notice physical changes that they accept that they are actually getting older.
So what exactly is aging — what causes it, how does the body change and how long can a person expect to live?
Some of the physical effects of aging are wrinkles, gray hair and slower reflexes, but what else is going on that you're not seeing? As individuals age, time takes its toll on the organs and systems in the body. How and when this occurs is unique to the individual. And everyone doesn't undergo the same changes. Still, in general, some of the age-related changes that occur include changes in:
Bones - As one ages, the bones become less dense as they slowly lose mass and minerals. Gradual loss of density weakens the bones and makes them more susceptible to fracture.
Brain - The number of neurons (cells) in the brain decreases. However, in some areas of the brain, the number of connections between cells increases, perhaps helping to compensate for the cellular decrease and maintain normal brain function.
Cardiovascular system - The size of the heart increases slightly. The blood pressure increases, the maximum heart rate decreases and the heart may take longer to return to its normal resting state after physical activity.
Hearing - The normal wear and tear of sounds over the years can damage the cells of the inner ears. The walls of the auditory canals also thin, and the eardrums thicken. Some will have greater difficulty hearing higher frequencies.
Kidneys - The size of the kidneys shrinks, and the amount your bladder can hold decreases. The kidneys also become less efficient at removing wastes from the blood.
Muscles - Muscle mass and strength decrease, though increased physical activity can reduce this effect. As the amount of water in the tendons and ligaments decreases, stiffness increases.
Reproductive system - Women produce less estrogen, progesterone and testosterone as they age. The uterus and the vagina shrink, and there's less vaginal lubrication. Men produce less sperm, and their levels of testosterone decrease.
Skin - The skin thins, and the nails grow at about half the pace they once did. The sweat and oil (sebaceous) glands become less active, and the moisture in the skin decreases.
Additional Reading: Aging Hearts and Arteries: A Scientific Quest
Vision - The eyes are less able to produce tears, the retina thins and the lenses yellow. In ones 40s, focusing on objects that are close-up becomes more difficult due to changes in the lenses. Later, the irises stiffen, making the pupils less responsive. This can make it more difficult to adapt to different levels of light. Further changes to the lenses can make an individual sensitive to glare.
Falls - In the United States, one of every three persons, aged 65 years and older, falls each year. Among older adults, falls are the leading cause of injuries, hospital admissions for trauma, and deaths due to injury. In 1999, about 10,097 seniors died of fall-related injuries. Fractures are the most serious health consequence of falls.
Approximately 250,000 hip fractures, the most serious fracture, occur each year among people over age 65. Many of these falls and resulting injuries can be prevented. Strategies to prevent falls among older adults include exercises to improve strength, balance, and flexibility; reviews of medications that may affect balance; and home modifications that reduce fall hazards such as installing grab bars, improving lighting, and removing items that may cause tripping.
Driving - While rates of motor vehicle related death and nonfatal motor vehicle related injuries among older adults vary by state, there are some consistencies. In most states, the fatality rates for men are twice those for women. In all states, motor vehicle-related fatalities are higher among adults 75 years and older, as compared with adults between 65 and 74 years of age. Among older adult drivers, the number of motor vehicle-related fatalities increased 30% and the number of nonfatal injuries increased 21% between 1990 and 1997.
How Long Do People Live?
One hundred twenty-two years is the longest documented human life span. Though a life span this long is rare, improvements in medicine, science and technology in the last century have helped more people live longer, healthier lives. In the early 1900s the average life expectancy in the United States at birth was only about 50 years. Today, it's close to 77.
Moreover, the 85-plus group is the fastest-growing demographic segment in the United States, although the number of people 100 and older has exploded as well. The U.S. Census Bureau projects that the number of people age 85 and older could increase from 4 million in 2000 to 19 million by 2050. And the number of people age 100 and older is projected to more than quadruple from 65,000 in 2000 to 381,000 in 2030.
In the last 10 years, scientists have made great progress in the study of aging. Currently, thousands of research projects on how to slow aging are under way in numerous medical specialties throughout the world. Scientists are studying a variety of topics including everything from cloning for spare parts to how DNA mutations affect aging to fighting cancer with viruses.
But longer lives also mean that some people may spend more time in an incapacitated state at the end of their lives, in part because the United States has done too little to promote healthy aging. Rates of obesity, sedentary lifestyle, smoking and alcohol abuse are still too high. However, researchers say it's never too late to clean up your act. For example, if an individual quits smoking, their risk of heart disease begins to fall almost immediately. Living a healthy lifestyle can improve how an individual ages. No matter the age, an individual can begin preparing now for their later years. An individual is the master of their own quality of life.
Clearly, old isn't what it used to be. And as more than 70 million baby boomers approach their retirement years, the definition continues to evolve.
ELDERLY, ALCOHOL AND ALCOHOLISM
While alcoholism has been increasingly diagnosed and treated in the general population as a whole, older persons, and 60 years of age and over, still constitute a "hidden" group with a significant number having medical problems associated with alcoholism and excessive drinking. The primary care physician can be the front line identifier of alcoholism and/or excessive drinking in the elderly. They need not be an expert or specialist in alcoholism or addiction medicine to assess the elderly patient, diagnose the disorder and provide for treatment. Physicians can update their own awareness in assessing and establishing a diagnosis, and in referring the elderly patient for on-going treatment for alcoholism and for any medical or psychiatric complications.
ELDERLY ALCOHOLIC/EXESSIVE DRINKERS DISPLAY:
- Severe memory loss.
- Inability to concentrate.
- Defensiveness or irritation when asked even routine, general questions about alcohol use.
- Extreme mood swings, even during a single office visit.
- Undo concern about physical ailments, sometimes bordering on hypochondria.
- Suicidal ideation.
ACUTE PRESENTING PROBLEMS IN THE ELDERLY
ALCOHOLIC/EXCESSIVE DRINKER PRESENTS:
- Severe gastrointestinal complaints.
- Loss of consciousness.
- Panic attack.
- Renal and bladder complications.
- Aspiration of vomitus.
- Angina and other cardiac involvement.
- CNS intoxication effects, including ataxia and dyskinesia.
Treatment of Alcoholism
The treatment of substance abuse and dependence in older adults is similar to that for other adults. Treatment involves a combination of pharmacological and psychosocial interventions, supplemented by family support and participation in self-help groups.
Pharmacotherapy for substance abuse and dependence in older adults has been targeted mostly at the acute management of withdrawal. When there is significant physical dependence, withdrawal from alcohol can become a life-threatening medical emergency in older adults. The detoxification of older adult patients ideally should be done in the inpatient setting because of the potential medical complications and because withdrawal symptoms in older adults can be prolonged. Benzodiazepines are often used for treatment of withdrawal symptoms. In older adults, the doses required to treat the signs and symptoms of withdrawal are usually one-half to one-third of those required for a younger adult. Short- or intermediate acting forms usually are preferred.
Alzheimer’s disease is one of the most feared mental disorders because of its gradual, yet relentless, attack on memory. Memory loss, however, is not the only impairment. Symptoms extend to other cognitive deficits in language, object recognition, and executive functioning. Behavioral symptoms, such as psychosis, agitation, depression, and wandering are common and impose tremendous strain on caregivers. Diagnosis is challenging because of the lack of biological markers, insidious onset, and need to exclude other causes of dementia.
Alzheimer’s disease is the most prevalent form of dementia. However, many of the issues raised also pertain to other forms of dementia, such as multiinfarct dementia, dementia of Parkinson’s disease, dementia of Huntington’s disease, dementia of Pick’s disease, frontal lobe dementia and others.
Counseling Alzheimer’s Patients and their Families
DURING THE EARLY STAGE
The first (mild) stage of AD generally lasts two to four years. Among the signs and symptoms (which may be mistaken for manifestations of aging) are loss of recent memory, inability to retain new information, subtle personality changes (including abandonment of interests and activities, and increasing stubbornness), and difficulty communicating. Depression is common and may be the presenting symptom; first-time depression in a patient older than 65 should be investigated as possible dementia. Patients begin to lack judgment and insight.
After diagnosis, the patient and family need straightforward information about the disease and the cognitive and functional changes to expect with each stage. Patients should be discouraged from driving, as even mild cognitive deficits are associated with increased risk of accidents.
Families will benefit from a list of community resources. The Alzheimer's Association, for example, offers invaluable information about support groups, respite care, individual and family counseling, and other services that can help ease the caregiver's physical, emotional, and financial concerns. The National Institute on Aging funds nearly 30 hospital- and university-based AD centers in the United States.
Patients and family caregivers also need information and advice about available medical treatments. Although medications approved to treat AD are expensive, their early use is an important means of prolonging the first stage--and preserving the patient's ability to participate in creating an advance directive and making other important decisions. Effective early treatment may also make it possible to delay institutionalization.
At each contact, patients should be evaluated for depression. Short-term treatment with selective serotonin reuptake inhibitors that have limited anticholinergic effects (eg, citalopram, sertraline) may be indicated for AD patients with depression. The family should be told to watch for and report symptoms such as apathy, irritability, refusal to eat, and weight loss, with the understanding that these may simply be symptoms of the dementia itself.
Caregivers should be reminded that attending to the patient's comorbid conditions can help slow the progression of disability and maintain function. Hypertension, diabetes, congestive heart failure, chronic obstructive pulmonary disease, arthritis, genitourinary conditions, and hypothyroidism are common concerns, as are vision and hearing impairment.
Early attention to the patient's environment is important (ie, consistency and structure, safety, moderate stimulation, and contrasting colors). Familiar items, including photographs and souvenirs, and orientation cues, such as clocks and calendars, can help stimulate memory and cognition. Some patients benefit from therapy using music, art, exercise, or pets, reminiscence therapy, and psychotherapy (emotion-oriented, supportive, and/or interpersonal).
The earliest stage of AD is an ideal time to broach the subject of advance care planning with the patient in the presence of the family or caregiver. More than one study has found that patients with early dementia can participate in completing advance directives. Considerations should include use of artificial nutrition and hydration, hospitalization, antibiotic use, and do-not-resuscitate orders.
THE MIDDLE STAGE
The moderate second stage of AD may last from two to 10 years. Patients require full-time supervision because of increasing confusion, declining ability to care for themselves, wandering tendencies, belligerence, and, for many, psychotic episodes. Communication skills continue to decline and delusions, agitation, and paranoia are common.
As symptoms progress, many caregivers begin to think about placing their loved ones in a long-term care facility. Behavioral strategies and appropriate pharmacologic management (discussed below) may help to delay this step. Families should be made aware of the available adult day care and community-based programs. They should also be directed to contact the Alzheimer's Association or the appropriate constituent unit of the National Council on Aging for information on financial resources.
Practical Coping Strategies
A safe, predictable environment and a consistent daily routine are the mainstay of managing potentially troublesome behaviors and the starting point for all other interventions. Safety measures include removing throw rugs and other obstructions over which patients may trip, and securing medicine, firearms, keys, toxic substances, and dangerous tools and utensils. Also, caregivers should be taught specific techniques to maintain optimal communication with the patient, such as those outlined by the Alzheimer's Association.
Apathy--manifested as loss of interest, poor persistence, blunted emotions, and lack of social interaction--may occur in 90% or more of AD patients. Apathetic patients may be mistaken as lazy or resistant, because they seem to expect others to initiate activities they themselves are still capable of performing. Functioning may be improved by regular exercise, increased social stimulation, prompt encouragement to begin activities, a structured activity routine, and use of visual cues to expected behaviors.
About 90% of patients also experience psychiatric manifestations, particularly behavioral disturbances. These include agitation (aggressiveness, combativeness, repetitious questioning, shouting, cursing, disinhibition) and wandering. The caregiver should look for physical or environmental stressors--such as pain or discomfort, anxiety, lack of sleep, noise, clutter, and presence of large numbers of people--that may be triggering or exacerbating the behavior, and these should be removed wherever possible. Caregivers can calm the patient better with an easygoing attitude than by challenging him or her.
Spending time outside with the patient when the weather permits, incorporating exercise into the patient's daily routine, and limiting the patient's caffeine intake are ways caregivers can help the patient avoid sleeplessness. A regular sleep schedule should be maintained, with naps limited to 30 minutes and use of the bed restricted to sleep only.
Wandering is a significant problem because it can be persistent and is inherently dangerous. Yet ambulation is considered an important factor in maintaining the AD patient's quality of life. One strategy is to provide a controlled environment where the patient may wander safely, rather than to try to eliminate the behavior. Wandering can be restricted by using child-proof doorknobs, mounting locks or latches higher or lower than eye level, obscuring doors with a scenic poster or curtains, and placing signs on doors with the words "stop" or "do not enter." Another effective technique is to keep outdoor clothing (symbols of departure) out of sight.
PBS: A Portrait of Alzheimer's
Required Reading: Guidelines for Alzheimer's Disease Management
Mental Disorders and Aging
Older adults are encumbered by many of the same mental disorders as are other adults; however, the prevalence, nature, and course of each disorder may be very different. This section provides a general overview of assessment, diagnosis, and treatment of mental disorders in older people. Its purpose is to describe issues common to many mental disorders.
Sleep disturbances are common and pharmacologic intervention should be considered only when other non-pharmacologic interventions have failed (American Psychiatric Association, 1997). The sleeping area should be free of distractions and might contain nightlights if helpful to the patient. Caregivers should be instructed to try to limit the amount of sleep during the day. Naps should be kept short and there should be increased exercise or activity in the morning/early afternoon. Patient should be dressed during daytime hours. Caffeine and nicotine should be avoided and nighttime fluids and diuretics should be restricted. Warm milk and tryptophan before sleep may be successful, as may a tepid bath or light snack high in carbohydrates (Warshaw, et al., 1995). Pharmacologic treatment of other sleep disorders must take into account whether depressive symptoms, fear, pain, or side effects from other drugs underlie the insomnia (Warshaw, et al., 1995). Great caution must be exercised and caregivers warned because of reactions (incontinence, instability/falls, agitation) with major tranquilizers. Antidepressants (e.g. Trazadone), minor tranquilizers or benzodiazepines may suffice in intermittent short-term doses, but should be terminated at the earliest possible time (Warshaw, et al., 1995). Use of various dopamine agonists has been described in case reports, but the efficacy of these drugs has not been demonstrated in controlled studies. Simple remedies, such as use of melatonin, may help insomnia. For stronger sedation, a low dose of antipsychotic is preferable to a longer-acting benzodiazepine, which often has lingering effects. Diphenhydramine hydrochloride (over-the-counter) should be avoided because it may increase confusion due to its anticholinergic effects (Inouye, 1998).
Schizophrenia in Late Life
Although schizophrenia is commonly thought of as an illness of young adulthood, it can both extend into and first appear in later life. Diagnostic criteria for schizophrenia are the same across the life span, and DSM-IV places no restrictions on age of onset for a diagnosis to be made. Symptoms include delusions, hallucinations, disorganized speech, disorganized or catatonic behavior, as well as affective flattening, alogia or avolition. Symptoms must cause significant social or occupational dysfunction, must not be accompanied by prominent mood symptoms, and must not be uniquely associated with substance use.
Prevalence and Cost
One-year prevalence of schizophrenia among those 65 years or older is reportedly only around 0.6 percent, about one-half the 1-year prevalence of the 1.3 percent that is estimated for the population aged 18 to 54.
Misuse of Prescription and Over-the-Counter Medications
Older persons use prescription drugs approximately three times as frequently as the general population and the use of over-the-counter medications by this group is even more extensive. Annual estimated expenditures on prescription drugs by older adults in the United States are $15 billion annually, a fourfold greater per capita expenditure on medications compared with that of younger individuals. Not surprisingly, substance abuse problems in older adults frequently may result from the misuse, that is, under use, overuse, or erratic use—of such medications; such patterns of use may be due partly to difficulties older individuals have with following and reading prescriptions. In its extreme form, such misuse of drugs may become drug abuse.
The special considerations in selecting appropriate medications for older people include physiological changes due to aging; increased vulnerability to side effects, such as tardive dyskinesia; the impact of polypharmacy; interactions with other comorbid disorders; and barriers to compliance.
The aging process leads to numerous changes in physiology, resulting in altered blood levels of certain medications, prolonged pharmacological effects, and greater risk for many side effects. Changes may occur in the absorption, distribution, metabolism, and excretion of psychotropic medications.
As people age, there is a gradual decrease in gastrointestinal motility, gastric blood flow, and gastric acid production. This slows the rate of absorption, but the overall extent of gastric absorption is probably comparable to that in other adults. The aging process is also associated with a decrease in total body water, a decrease in muscle mass, and an increase in adipose tissue. Drugs that are highly lipophilic, such as neuroleptics, are therefore more likely to be accumulated in fatty tissues in older patients than they are in younger patients.
The liver undergoes changes in blood flow and volume with age. Phase I metabolism (oxidation, reduction, hydrolysis) may diminish or remain unchanged, while phase II metabolism (conjugation with an endogenous substrate) does not change with aging. Renal blood flow, glomerular surface area, tubular function, and reabsorption mechanisms all have been shown to diminish with age. Diminished renal excretion may lead to a prolonged half-life and the necessity for a lower dose or longer dosing intervals.
Pharmacodynamics, which refers to the drug’s effect on its target organ, also can be altered in older individuals. An example of aging-associated pharmacodynamic change is diminished central cholinergic function contributing to increased sensitivity to the anticholinergic effects of many neuroleptics and antidepressants in older adults.
Because of the pharmacokinetic and pharmacodynamic concerns presented above, it is often recommended that clinicians “start low and go slow” when prescribing new psychoactive medications for older adults. In other words, efficacy is greatest and side effects are minimized when initial doses are small and the rate of increase is slow. Nevertheless, the medication should generally be titrated to the regular adult dose in order to obtain the full benefit. The potential pitfall is that, because of slower titration and the concomitant need for more frequent medical visits, there is less likelihood of older adults receiving an adequate dose and course of medication.
Increased Risk of Side Effects
Older people encounter an increased risk of side effects, most likely the result of taking multiple drugs or having higher blood levels of a given drug. The increased risk of side effects is especially true for neuroleptic agents, which are widely prescribed as treatment for psychotic symptoms, agitation, and behavioral symptoms. Neuroleptic side effects include sedation, anticholinergic toxicity (which can result in urinary retention, constipation, dry mouth, glaucoma, and confusion), extrapyramidal symptoms (e.g., Parkinsonism, akathisia, and dystonia), and tardive dyskinesia.
What is a Geriatric Psychiatrist?
A geriatric psychiatrist is a medical doctor with special training in the diagnosis and treatment of mental disorders that may occur in older adults. These disorders include, but are not limited to, dementia, depression, anxiety, and late-life schizophrenia. Older adults have special physical, emotional, and social needs. Understanding this, the geriatric psychiatrist takes a comprehensive approach to diagnosis and treatment, including listening and responding to the concerns of the older adult, helping families, and when necessary, working with other health care professionals to develop effective approaches to treatment. Co-existing medical illnesses, medications, family issues, social concerns, and environmental issues are integrated into a comprehensive program of care.
Never has there been an era more conscious of chronological age than this one. People will go to extraordinary lengths to maintain a youthful appearance, from elaborate beauty preparations, to plastic surgery, vitamin cocktails and much more besides. Retirement is often seen as a withdrawal from usefulness and active participation in communities.
Yet in some cultures (like the Hunza and Vicabamba), there seems to be no concept of retirement; people remain active in farming, teaching and walking long distances all their lives. In other cultures, especially where oral traditions are strong, older people have played an important role in society by passing on knowledge to younger generations. This suggests that in contexts, such as modern western culture, where the status of older people is low, it is because attitudes determine that it will be low, not because it is a natural consequence of the ageing process.
A definition of ageism is: 'a set of attitudes that generate fear and denigration of the ageing process and stereotyping presumptions regarding competence'. Ageism is reflected in unjustified age discrimination in employment, in patronizing or denigrating attitudes, negative (or non-existent) media images, and the widespread expectation that retirement from full-time employment means the end of usefulness and of active participation in society.
Long Term Care
Most elderly individuals are independent. But later in life, individuals in their 80s and 90s may begin to need help with everyday activities like shopping, cooking, walking and bathing. For many people, regular or “long-term” care may mean help from family and friends or regular visits by a home health aide. For others who are frail or suffering from dementia, long-term care may involve moving to a place where professional care is available 24 hours a day.
The good news is that families have more choices in long-term care than ever before. Today, services can provide the needed help while letting you stay active and connected with family, friends, and neighbors. These services include home health care, adult day care, and transportation services for frail seniors as well as foster care, assisted living and retirement communities, and traditional nursing homes.
Successful long-term care means planning ahead –
If a patient is having trouble with things like bathing, managing finances, or driving, make sure they consult with a doctor.
You probably will need to get other family members involved. A special type of social worker, called a geriatric case manager, can help the family through this complex time by developing a long-term care plan and locating appropriate services. Geriatric case managers can be particularly helpful when family members live a long distance apart.
Talk about the best way to meet his or her needs. For instance, if he or she is having trouble making meals, would they want meals delivered by a local program or would they like family and friends to help? Would they let a paid aide in their home? If they don’t drive, would they like a friend or bus service to take them to the doctor or other appointments?
Learn about the types of services and care in your community. Doctors, social workers, and others may have suggestions. The Area Agency on Aging and local and state offices of aging or social services can give you lists of adult day care centers, meal programs, companion programs, transportation services, or places providing more care.
Find out how they may, or may not, be covered by insurance. The Federal Medicare program and private “Medigap” insurance only offer short-term home health and nursing home benefits. Contact your state-run Medicaid program about long-term nursing home coverage for people with limited means. Also, your state’s insurance commission can tell you more about private long-term care policies and offer tips on how to buy this complicated insurance. These agencies are listed in your telephone book, under “Government.”
Be aware that figuring out care for the long term isn’t easy. Needs may change over time. What worked 6 months ago may no longer apply. Insurance coverage is often very limited and families may have problems paying for services. In addition, rules about programs and benefits change, and it’s hard to know from one year to the next what may be available.
Facts about long term care:
- 80% of Long Term Care is received in a home-like setting.
- The average cost of a semi-private nursing home bed is $50,000 per year or more!
- Home care costs average $20,000 per year or more!
- Medicare will NOT pay for Long Term Care.
- Medicare HMOs will NOT pay for Long Term Care.
- Caring for the caregiver is just as important as caring for the aging adult.
Signs that one may need additional care:
Elderly adults often are reluctant to accept help from loved ones for fear of losing their independence.
Communicate with elderly patients in a non-threatening manner if you believe they need help for their physical or mental limitations. Ability, not age, is the best way to judge if a person needs daily assistance. Watch for these warning signs:
Difficulty doing basic tasks, such as walking, dressing, eating and cooking may be signs that one needs additional care.
Poor remembering skill are a sign that help may be needed. If the elderly person is unable to remember familiar names, places, or recent events he or she needs extra attention. Poor hygiene and/or an inability to fulfill responsibilities can be signs that extra help is needed. If you spot unopened mail, unpaid bills and bank account overdrafts, you should be concerned.
Changes in health including weight loss, incontinence, changes in appetite and bruising from falls can be signs.
Signs of isolation including lost of interest in friendships and activities are warning signs. You should be concerned with alcohol or drugs use. Paranoia and depression are common signs of dementia and other chronic disorders.
At some point, support from family, friends, or local meal or transportation programs may not be enough. If they need a lot of help with everyday activities, they may need to move to a place where care is available around-the-clock. There are two types of residential care:
Assisted living - arrangements are available in large apartment or hotel-like buildings or can be set up as “board and care” homes for a small number of people. They offer different levels of care, but often include meals, recreation, security, and help with bathing, dressing, medication, and housekeeping.
Skilled nursing facilities – “nursing homes” – provide 24-hour services and supervision. They provide medical care and rehabilitation for residents, who are mostly very frail or suffer from the later stages of dementia.
Sometimes, health care providers offer different levels of care at one site. These “continuing care communities” often locate an assisted living facility next to a nursing home so that people can move from one type of care to another if necessary. Several offer programs for couples, trying to meet needs when one spouse is doing well but the other has become disabled.
Adult Day Care
Over the past few decades, adult day centers have developed as an important service delivery approach to providing community-based long-term care. Adult day centers, although heterogeneous in orientation, provide a range of services, usually during standard “ 9 to 5” business hours, including assessment, social, and recreation services, for adults with chronic and serious disabilities. They represent a form of respite care designed to give caregivers a break from the responsibility of providing care and to enable them to pursue employment.
Over the past 30 years, adult day centers have grown in number from fewer than 100 to over 4,000, under the sponsorship of community organizations or residential facilities. A large national demonstration program on adult day centers showed that they can care for a wide spectrum of patients with Alzheimer’ s disease and related dementias and can achieve financial viability. There also is evidence that adult day centers are cost-effective in terms of delaying institutionalization, and participants show improvement in some measures of functioning and mood.
Long-term care ombudsmen are advocates for residents of nursing homes, board and care homes, assisted living facilities and similar adult care facilities. Since the Ombudsman Program began in 1972, thousands of paid and volunteer ombudsmen working in every state and three other jurisdictions have made a dramatic difference in the lives of long-term care residents. LTC ombudsmen advocate on behalf of individuals and groups of residents, provide information to residents and their families about the long-term care system, and work to effect systems changes at the local, state and national level. They provide an on-going presence in long-term care facilities, monitoring care and conditions and providing a voice for those who are unable to speak for themselves.
The Ombudsman Program is established under the Older Americans Act, which is administered by the Administration on Aging (AoA). Local ombudsmen work on behalf of residents in hundreds of communities throughout the country.
About one thousand paid and 14,000 volunteer staff (8,000 certified) investigate over 260,000 complaints each year. They provide information to more than 280,000 people on a myriad of topics including how to select and pay for a long-term care facility.
While the vast majority of frail and homebound older people receive quality care at home, abuse does occur. Estimates vary, but most studies find rates of abuse by caregivers, either family or non-family members, to range up to 5 percent. Abuse is generally defined in terms of being physical, psychological, legal or financial. The abuse is most likely to occur when the patient has dementia or late life depression, conditions that impart relatively high psychological and physical burdens on caregivers.
A recent report by the Institute of Medicine describes the range of interventions for protection against abuse of older people, including caregiver participation in support groups and training programs for behavioral management, especially for Alzheimer’s disease, and social services programs (e.g., adult protective services, casework, advocacy services, and out-of-home placements). While there are very few controlled evaluations of these services, communities need to ensure that there are programs in place to prevent abuse of older people.
Mandated reporters must report actual or suspected physical and sexual abuse, abandonment, isolation, financial abuse, mental abuse, or neglect of an elder or dependent adult. Failure of a mandated reporter to report abuse is a misdemeanor, punishable by a jail sentence or fine. Report the abuse immediately by telephone followed by a written report within two working days using the standardized abuse reporting form.
Normal Life-Cycle Tasks
With improved diet, physical fitness, public health, and health care, more adults are reaching age 65 in better physical and mental health than in the past. Trends show that the prevalence of chronic disability among older people is declining: from 1982 to 1994, the prevalence of chronic disability diminished significantly, from 24.9 to 21.3 percent of the older population. While some disability is the result of more general losses of physiological functions with aging (i.e., normal aging), extreme disability in older persons, including that which stems from mental disorders, is not an inevitable part of aging.
Normal aging is a gradual process that ushers in some physical decline, such as decreased sensory abilities (e.g., vision and hearing) and decreased pulmonary and immune function. With aging come certain changes in mental functioning, but very few of these changes match commonly held negative stereotypes about aging. In normal aging, important aspects of mental health include stable intellectual functioning, capacity for change, and productive engagement with life.
Cognition subsumes intelligence, language, learning, and memory. With advancing years, cognitive capacity with aging undergoes some loss, yet important functions are spared. Moreover, there is much variability between individuals, variability that is dependent upon lifestyle and psychosocial factors. Most important, accumulating evidence from human and animal research finds that lifestyle modifies genetic risk in influencing the outcomes of aging. This line of research is beginning to dispel the pejorative stereotypes of older people as rigidly shaped by heredity and incapable of broadening their pursuits and acquiring new skills.
Retirement often is viewed as the most important life event prior to death. Retirement frequently is associated with negative myths and stereotypes. However, most people fare well in retirement. They have the opportunity to explore new interests, activities and relationships due to retirements liberating qualities. In the Retirement phase, new feelings of freedom, courage, and confidence are experienced.
Those at risk for faring poorly are individuals who typically do not want to retire, who are compelled to retire because of poor health, or who experience a significant decline in their standard of living. In short, the liberating experience of having more time and an increased sense of freedom can be the springboard for creativity in later life. People can change the course of an individual, family, community, or culture.
Prevention of Excess Disability
Prevention efforts in older mentally ill populations also target avoidance of excessive disability. The concept of excess disability refers to the observation that many older patients, particularly those with Alzheimer’s disease and other severe and persistent mental disorders, are more functionally impaired than would be expected according to the stage or severity of their disorder. Medical, psychosocial, and environmental factors all contribute to excess disability. For example, depression contributes to excess disability by hastening functional impairment in patients with Alzheimer’s disease. The fast pace of modern life, with its emphasis on independence, also contributes to excess disability by making it more difficult for older adults with impairments to function autonomously. Attention to depression, anxiety, and other mental disorders may reduce the functional limitations associated with concomitant mental and somatic impairments. Many studies have demonstrated that attention to these factors and aggressive intervention, where appropriate, maximize function.
Prevention of Premature Institutionalization
Another important goal of prevention efforts in older adults is prevention of premature institutionalization. While institutional care is needed for many older patients who suffer from severe and persistent mental disorders, delay of institutional placement until absolutely necessary generally is what patients and family caregivers prefer. It also has significant public health impact in terms of reducing costs. A randomized study of counseling and support versus usual care for family caregivers of patients with Alzheimer’s disease found the intervention to have delayed patients’ nursing home admission by over 300 days. The intervention also resulted in a significant reduction in depressive symptoms in the caregivers. The intervention consisted of three elements: individual and family counseling sessions, support group participation, and availability of counselors to assist with patient crises.
What is caregiving?
Caregiving means caring for others, whether friends or relatives, who have health problems or disabilities and need help. Caregivers provide many kinds of help to care receivers, from grocery shopping to helping with daily tasks such as bathing, dressing, and eating. Most people who need help from caregivers are elderly.
Caregiver and Stress
Caregiver stress is a daily fact of life for many caregivers. Caregiving often takes a great deal of time, effort, and work. Many caregivers struggle to balance caregiving with other responsibilities including full-time jobs and caring for children. Constant stress can lead to "burnout" and health problems for the caregiver. Caregivers may feel guilty, frustrated, and angry from time to time.
Caregivers often need help caring for an elderly or disabled care receiver. Sometimes other family members or friends and neighbors are able to help, but many caregivers do most or all of the caregiving for a loved one alone. Research has shown that caregivers often are at increased risk for depression and illness. This is especially true if they do not receive enough support from family, friends, and the community.
Caring for a person with Alzheimer's disease or other kinds of dementia at home can be overwhelming. The caregiver must cope with declining abilities and difficult behaviors. Basic activities of daily living often become hard to manage for both the care receiver and the caregiver. As the disease worsens, the care receiver usually needs 24-hour care.
What can caregivers do to prevent stress and burnout?
Caregivers can call upon others for support and assistance. Other family members, friends, and neighbors may be able to help in different ways. It may not be easy to ask for help, and they may need to make very specific requests. But getting help from others will benefit the caregiver and the person being caring for.
Respite care can be a good way to get a break (respite) from constant caregiving. If other caregivers aren't available to fill in for the main caregiver, respite care services may be available in the community.
Caregivers can take steps to take care of their own health: Caregivers should eat a healthy diet rich in fruits, vegetables and whole grains and low in saturated fat. They need to get enough sleep and rest. Caregivers need time for some exercise most days of the week. Regular exercise can help reduce stress and improve a person’s health in many ways. They should see a health care provider for a checkup if they have symptoms of depression or illness. Caregivers should seek counseling if needed. Caregivers should stay in touch with friends. Social activities can help keep a feeling of being connected and should help with stress. Faith-based groups can offer support and help to caregivers. Caregivers should find a support group for other caregivers in their situation (such as caring for a person with dementia). Many support groups are available online through the Internet.
Additional Required Reading: Caregiver Guide
Bereavement and the Aging
For The elderly, bereavement is very much a part of life. Although people of all ages may experience the death of someone they love, for old people losses occur much more frequently. Now that many people live into their 80's and 90's it is no longer unusual to outlive one's children in addition to one's peers. For the institutionalized elderly in hospitals or long-term care facilities death is all around. Although the people who die may not have been particularly close friends, their deaths do not go unnoticed. At the very least, they are constant reminders of one's own mortality.
The Bereavement Process
Whether because of some of the popular literature or because of implicit or explicit cultural attitudes, people tend to think that grieving should be over within a year and that there are set stages one should go through. People who have experienced bereavement will often tell you that this is not so, and numerous studies confirm that the normal grieving process may be long and uneven. Although the acute phase usually lasts only several months, it may take a couple of years for people to resume their normal level of activities and enjoy life again. And in some ways, people never fully get over their feelings of loss.
There are many reactions to loss, including emotional and physiological changes as well as changes in social relations. And the experience of loss differs from person to person. In addition to sadness, a host of other emotions are common during bereavement, including some that may be surprising. Often survivors feel angry--angry for having been left alone, angry at the deceased for dying. Feeling angry at the deceased can heighten feelings of guilt, which is another common emotion following bereavement. People feel remorse about things they did or didn't say, or they wonder whether the death could have been avoided if only they had done something different. Many people experience rapid emotional changes, and even hallucinations about the deceased are not uncommon in recently bereaved people.
The bereaved typically report physical problems ranging from difficulty sleeping and eating to respiratory troubles and even pains and other symptoms that mimic those the deceased person had experienced. Potentially damaging health behaviors, such as increased drinking and smoking, are common.
Usually these emotional and physical complaints taper off after a while and have no lasting consequences. However, some bereaved people are at increased risk for illness and even death. Bereavement can exacerbate existing illness and appears to have a role in precipitating new illness. Widowed men up to age 75 are about 1-1/2 times more likely to die than married men of the same age. Most bereaved people appear depressed for a few months; after one year, an estimated 10 to 20 percent of the widowed population is still sufficiently symptomatic to be considered clinically depressed. Given that there are 800,000 new widows and widowers annually, this means that 80,000-160,000 will suffer true depression each year.
Although it is difficult to predict with certainty who will do well and who will experience lasting difficulty following bereavement, there are several factors that appear to have a significant influence on recovery. Social support has repeatedly been shown to be a reliable predictor of adjustment following a death. People who have no support or feel they have no one to talk to are likely to do poorly. People who are already in ill health, physically or emotionally, are more vulnerable to negative health consequences. This is especially true of people who were depressed to begin with. Concomitant life changes and crises can make the grieving process more difficult. Especially among the elderly, the death of a spouse is likely to result in substantially reduced income and may necessitate significant changes in life style, including moving to a new home, changes which themselves are stressful. The elderly are also more likely to experience several deaths within a short period of time.
Finally, the course of bereavement is likely to be influenced by who died and how. It is generally acknowledged that violent and unexpected death, especially suicide, leaves survivors more vulnerable. And, of course, the nature and meaning of the particular relationship that is lost will affect the bereavement process (for detailed discussions of risk factors, see Raphael, 1983).
Types of Losses
Most of the research and clinical literature on bereavement has focused on the loss of a husband or wife. Very little has been written about the loss of siblings or children in the adult years and even less attention has been focused on the loss of one's friends. Just as each relationship has its own quality and importance, so too, does each death have its own meaning.
Loss of Spouse. The death of one's spouse is a loss in many different ways because marriage has so many different aspects to it. It is the loss of companionship, a sexual partner, co-manager of the household, and partner in decision-making, and for many, it is the loss of one's best friend. The surviving spouse is left alone--alone to make decisions and to perform all household tasks, some of which may be quite unfamiliar. If a couple has lived alone, when one spouse dies the other is often left without anything to prepare a meal for and no reason, other than one that is entirely self-imposed, to adhere to any particular routine. In short, the death of a spouse is not only an emotional loss, it is a social loss often requiring major changes in life style and role performance (Parkes and Weiss, 1983).
Today's elderly may be poorly equipped to deal with many of the daily tasks of living that they must take on when a spouse dies. Older men and women were socialized to think in terms of much sharper division of labor than is the case with many young couples. Elderly widows may know nothing about financial management and suddenly be faced with the seemingly overwhelming task of figuring out how to budget wisely and to decide whether other life changes are necessary or appropriate. Should they move out of the family home and into an apartment if the house is paid off and the apartment will require a substantial monthly outlay of funds? What should be done with the life insurance money? These kinds of questions are difficult enough to answer under the best of circumstances, but when one is not used to thinking about them and one is grieving, they are even more difficult to contemplate.
Elderly widowers are likely to be left with a different, but equally unfamiliar, set of tasks and questions. Many have never done routine household chores such as cooking, laundry, and cleaning. They were the wife's domain. For the widower, these tasks can assume major importance and may affect health. Many elderly men suffer from chronic diseases such as hypertension, heart disease, and diabetes and require special diets and regular medication. Yet, in many families it is the wife who has become knowledgeable about what foods are appropriate and how they should be cooked, and what medicines should be taken when. Inattention to these details can lead to exacerbated illness and sometimes death.
For both men and women, the loss of a spouse alters social status. As a single person, the widowed may be less comfortable or less welcome in couples' activities. Previous friendship networks may be less available in an important time of need for social supports than they were when no special need existed. Because the loss of a spouse alters social status and necessitates learning new roles and tasks, many people refer to bereavement not as a crisis, but as a "transition" (Silverman, 1982). Among the frail elderly, the death of a spouse often results in institutionalization if the survivor cannot manage alone, a traumatic move that is frequently associated with further decline.
In addition to the impact of all of the above on the course of the bereavement process, two types of marital relationships--those involving intense ambivalence and/or excessive dependence--make it harder to separate from the deceased and are likely to lead to difficulties in grieving. Although virtually all relationships are characterized by some mixture of positive and negative feelings (e.g., affection and hostility), high ambivalence appears to complicate grieving. Similarly although most marital relationships involve some dependence on one another, when a person has been overly dependent on his or her spouse (often because they did not complete the separation-individuation process in childhood), bereavement reactions may include exaggerated fear, anger, and distress, which result in particular difficulty in coping (Parkes and Weiss, 1983).
Death of a Sibling. Although there is virtually no literature on the special meaning of sibling death in older life, one can extrapolate from some of the literature on loss of siblings in childhood and from discussions of the nature of sibling relationships to gain some understanding of the special meaning of that kind of loss. Brothers and sisters may be emotionally close or distant. They may live near one another and see each frequently or live far apart and rarely get together. Regardless of emotional closeness or level of involvement in everyday activities, when a sibling dies, it is a powerful reminder of one's own mortality. If the sibling dies of an inheritable disease, it heightens feelings of vulnerability.
The death of one sibling often results in a realignment of responsibilities among the surviving children. Fox example, if the deceased was the one who took responsibility for bringing the family together for special occasions, for looking after an ill family member, or for giving advice about various matters, the survivors will now have to redistribute those tasks (intentionally or unintentionally). Ambivalent feelings are very common among siblings. As mentioned above, such feelings can complicate the grieving process.
Death of a Child. Although a substantial literature exists on parents' reactions to the death of an infant or young child, only one real study has focused on the death of an adult child (Levav, 1982). While some observers claim that the death of a young child is the most stressful, based on his clinical experience, Gorer (1965) believes that "the most distressing and long-lasting of all grief. . . is that for the loss of a grown child."
Until this century, death in infancy and childhood were fairly common, and it was the rare person who lived much beyond 60. Now we expect to live to old age and we certainly expect that our children will outlive us. This expectation of dying before our children do makes the death of a child especially painful--it is untimely and because it seems unfair for a younger person to die, bereaved parents may have heightened feelings of anger. Although it is common for bereaved people to feel some guilt about the death, however unfounded, and to wonder what might have been done to forestall or avoid death, guilt among bereaved parents is even more common. These feelings of anger and guilt have the potential for complicating the bereavement process.
In addition to the emotional impact, an adult child's death may leave the elderly without a caretaker. As with the death of a spouse, other major life-style changes may be necessary.
Assisting the Bereaved
There are three basic approaches to helping the bereaved: mutual support, psychotherapy, and medication. These methods can be used alone or in conjunction with one another.
Mutual support and psychotherapy may be used in a variety of ways. They may be designed for individuals or families, for bereaved people in general or for special groups of bereaved people (such as relatives of suicide victims, parents who have lost children, widows, etc.). These interventions may also be designed to help prior to or after the death. Both approaches offer the opportunity for the bereaved to express feelings in a safe and supportive (nonjudgmental) environment.
Mutual Support. This approach to assisting the bereaved is premised on the belief that "the person best qualified to understand and help with the problems of the bereaved person is another bereaved person". Typically, mutual support groups provide information about the bereavement process, offer practical assistance, and, by example, reassure the newly bereaved that things will get better. Mutual support efforts may be directed by lay people, alone, as alternatives to the health care system, or in conjunction with health care professionals.
Most mutual support groups are modeled after the Widow-to-Widow program developed by Phyllis Silverman in boston beginning in the mid-1960s (Silverman, 1975). Trained widow helpers used an outreach approach to identify new widows. The goal of the program was to assist widows with the life transition by providing information and teaching them the skills they needed to learn to adapt to their altered circumstances. A one-to-one approach was used initially, followed by group interaction. This basic model has been adapted for programs in this country, Canada, and abroad. It has been used extensively for widows, rarely for widowers (for whom few services exist generally), and increasingly for parents of dying or deceased children and other special groups of bereaved people.
One of the most interesting recent adaptations of the mutual support approach exists in hospice programs. Hospices care for terminally ill patients and their families. Because the family is the nit of care, pre bereavement support is offered in addition to help after the death. Hospices have a unique opportunity to observe and assist with family functioning, an opportunity that is lacking in the traditional health care system. Most hospice bereavement programs are directed, and heavily dominated by lay people who have themselves been bereaved, although health professionals, especially nurses, ar also involved. Like other mutual support approaches, hospices vary greatly in the extent of the services offered. Pre bereavement support includes emotional support and validation of feelings, information and education, and practical assistance to the family that is often caring for the dying patient at home. "The entire ethos of hospice are is also likely to lend support through its implicit acceptance of death and willingness to discuss and plan for it" (Osterweis, Solomon, and Green, 1984).
Following bereavement, about 70% of hospices offer support for about one year. The support is often modest--a periodic phone call, social gatherings, or occasional visits. When the patient enters the hospice program, most hospices assign a grief worker to the family to assist during the prebeavement and post bereavement periods. Some hospices, most notably the Boulder Country Hospice in Colorado, assign a new person to work with the family after the death, believing that one of the most urgent needs for the newly bereaved is to "tell his story" repeatedly and without fear of correction or contradiction. This need id best served by a person with no previous involvement with the case (Lattanzi, 1982).
Psychotherapy. For people who experience pathological or distorted grief reactions or who feel overwhelmed by their grief, professional mental health intervention may be warranted. A number of different kinds of psychotherapy exist, using a variety of health professionals. Whether psychodynamic, behavioral, cognitive, or systems-oriented, psychotherapy may focus on individuals, families, or groups of similarly bereaved people, and therapy may be brief and time-limited or open ended and long-term.
The most common approach to assisting individuals is probably the psychodynamic orientation that assumes that abnormal reactions derive from preexisting personality factors in the bereaved individual, special life circumstances, or aspects of the relationship with the deceased. Unresolved previous losses, defective defensive and coping strategies, preexisting emotional instability, and ambivalence and dependence are some of the things they may be worked on. The goal is to work through grief by clarifying neurotic conflicts and troubling emotions.
In contrast to this approach, behaviorists tend to focus more on specific behaviors than on internal dynamics, and cognitive therapists focus on restructuring the loss by reliving it in the imagination. Also, numerous interpersonal approaches work with the family group or with an individual patient but with the focus on psychosocial aspects of the problem. Family systems therapists, for example, emphasize the impact of loss on the family system and work on communication issues, clarification of altered roles, and individual patterns of behavior that strain the system.
Impact of Interventions
There have been very few studies of the impact of any of the many types of psychosocial interventions in terms of their ability to reduce the stress of bereavement or mitigate long term negative effects. Furthermore, there is no evidence that all people need or want formal interventions. For the bereaved whose informal social support may fill this void. Numerous anecdotal reports attest to the helpfulness of various mutual support programs in providing support, reassurance, and information, and there is some suggestion that such interventions may help some people move faster through the bereavement process (Vachon, et al., 1980).
A few evaluations of short-term psychotherapy have been conducted. These suggest that such therapy can be useful in terms of enhancing self-concepts, resolving old conflicts, and ameliorating depressive symptoms. As the Institute of Medicine report concluded:
"For people who experience normal reactions and who are not seen as being at particularly high risk for adverse consequences of bereavement, the support of family and friends, perhaps augmented by some type of mutual support interventions, will generally be sufficient. However, for people who define themselves or who are seen by others in the community as continuing to be overwhelmed by their grief (or unable to grieve), psychotherapeutic interventions may be warranted. In addition, certain categories of people may be at such high risk following bereavement that they should perhaps be evaluated by mental health professionals and followed for some period of time, with psychotherapeutic interventions as indicated. These groups include . . . people with a history of psychiatric disorders (especially depression), and people related or close to someone who committed suicide. (Osterweis, Solomon, and Green, 1984)."
Drug Therapy. Three groups of drugs--anti-anxiety medications (sedatives, minor tranquilizers), sleeping pills (hypnotics), and antidepressants--are commonly prescribed for bereaved people. The bereaved frequently report using sedatives and/or sleeping pills to reduce anxiety and aid sleep. Tricyclic antidepressants, which are effective in relieving symptoms of clinical depression, have also occasionally been used to control symptoms of grief, such as sadness and feelings of hopelessness.
There have been no clinical studies of the effects of any of these drugs for bereaved people. Even if they were shown to be effective in reducing or alleviating the symptoms of grief, there would be substantial controversy about the use of medications for a condition, which though painful, is normal.
In fact, some people worry that drugs can interfere with grief work and will ultimately lead to complications. Even those who support the use of psychopharmacologic drugs to relieve symptoms during the intense period of grief caution that "the final resolution of loss is better accomplished by psychiatric help than by the use of drugs. Although drugs may be helpful in treating the bereaved, their use is adjunctive, symptomatic, and limited in time".
Furthermore, all three classes of drugs carry potential risks--they can be lethal in large doses or in combination with alcohol, and some entail risk of drug dependence. Because elderly patients metabolize drugs more slowly than young people certain anti-anxiety medications and sleeping pills (long-acting benzodiazepenes) may cause problems in coordination, alertness, and mood that develop gradually and are difficult to diagnose; this adds new hazards to an older person's period of grieving.
For most people, bereavement triggers a long and painful process in which one's emotional, social, and physiological functioning may be substantially altered for more than a year. Everyone needs information and support to help them get through this stressful time. The elderly, from whom losses are increasingly frequent, may have special problems following bereavement because of previous ill health, lack of social support, and lack of resources (financial and skills) needed to accomplish a smooth transition. Most of the research on bereavement has focused on conjugal loss, with little attention paid to other losses (siblings, children, and friends) that are especially common among the elderly. Although there are many programs designed to assist bereaved women, there are few for bereaved men despite epidemiological evidence suggesting that men are at higher risk than women for negative outcomes. For reasons that are not negative outcomes. For reasons that are not entirely clear, programs designed for widowers are often underutilized.
The impact on the therapist of a focus on death, dying, and bereavement
Recognizing the growing numbers of family therapists who are choosing a focus on death, dying, and bereavement, this article addresses the nature of the commitment required-as well as the gifts and challenges presented by work in this area. Particular attention is given to therapists' vulnerability to compassion fatigue and/or vicarious traumatization, both of which are described and discussed. A variety of strategies for individuals and institutions, aimed at supporting professionals and preventing problems, are considered. It is concluded that as family therapists focus on self-care as well as client care, they have the potential to increase not only their effectiveness but also to enhance their own well-being. Implications for training and for research on this topic also are considered.
"For there is nothing heavier than compassion. Not even one's own pain weighs so heavy as the pain one feels with someone, for someone, a pain intensified by the imagination and prolonged by a hundred echoes."
As the field of family therapy was coming of age in the late 1960s and early 1970s, this highly volatile era in our social history also saw a great growth in awareness of, as well as responses to, the previously unmet needs of those who were dying. Accordingly, the concepts of hospice and palliative care, pioneered in England by Saunders, and of thanatology, pioneered in the U.S. by Kubler-Ross (1969), emerged, signaling the birth of a new movement. For example, in 1974, the first meeting of what later would be called the International Work Group on Death, Dying and Bereavement was held. In 1976, the Forum for Death Education and Counseling, subsequently renamed the Association for Death Education and Counseling, was created in response to the needs of a growing number of professionals involved in this work.
Despite this shift in attitude toward death and dying and its on-going evolution in the professional arena, in the larger realm of society, denial, described many years ago by Becker (1973), and fear, noted by Foos-Graber (1989), generally have continued to be the norm (Byock, 1997; Kuhl, 2002). Indeed, at various points in the not-so-distant past, perceptions of death have been so negative that it has been construed both as a social disease (Shneidman, 1980) and as a less acceptable topic of conversation than sexual activity (Gorer, 1980). More recently, Stiller (2001) indicates that conversations related to this topic remain taboo and that "cultures take extraordinary measures to eliminate reminders of our impending death". Such efforts at denial undoubtedly are related to fears about death, a concept and an experience about which there always will remain more questions than answers.
The form of such fears has been explained in many ways. In terms of the avoidance of conversations about death, suggests that "We are afraid that talking about death beckons it," that is, if we ignore it perhaps it will go away. According to Neale (1973), tears about death arise from concerns about the dying process, about what will happen the moment after death occurs, and about the loss of one's only life. Fears also may be related to awareness of a lack of meaning in one's life, to negative associations around the decay of one's body, to apprehension about judgment, and to dread of the unknown (Stiller, 2001). Yet another source of fear is described as follows:
Our greatest fear is that when we die we will become nothing. Many of us believe that our entire existence is only a life span beginning the moment we are born or conceived and ending the moment we die. We believe that we are born from nothing and so we are filled with fear of annihilation. (Hanh, 2002)
Thus, even when permission is granted to talk about the subject, dialogues about death generally are conducted in a serious, solemn, and subdued manner (Hainer, 1997). Unfortunately, such a tone tends to heighten rather than diminish fearfulness and anxiety. Hence many lay persons, and even other professionals, express surprise and concern that the choice to work in the domain of death, dying, and bereavement must be morbid and depressing. For example, one therapist recently related to me that, following his voluntary immersion in attempts to help teenagers deal with the death of a classmate in a tragic accident, he had been asked by a colleague, "Why would you want to do that?" Although such a question certainly may make sense from an outsider's perspective, for those on the inside, the nature of a focus in the realm of death and dying generally looks very different and may evolve for a variety of reasons.
For me, the catalyst to begin exploring grief and bereavement was the death of my 22-year-old son in 1987. This was the most devastating event of my life, and one for which I was very poorly prepared. I, too, had been a deny-er, had feared death, and had had little acquaintance with it. Not surprisingly, therefore, the journey back to health and healing took many years. It is only recently that I have been able to write in detail about death in general and my experiences in particular (Becvar). In the intervening period, I invested a great deal of energy in the search for explanations and understanding. As a function of my explorations, I not only lost my fear of death but also achieved a much greater appreciation for life. Today I feel passionate about sharing what I have learned and about helping people who also find themselves living in death's shadow. Like many others who have a similar focus, I feel extremely fortunate that in my role as a family therapist I have the opportunity to work with those who are dying and/or grieving. Al the same time, I am aware of and sensitive to the various dilemmas that may arise as a function of the context within which one is attempting to provide services. This awareness was the impetus for further explorations into the impact of grief work on the family therapist.
GIFTS AND CHALLENGES
For professionals who choose to care for those who are dying and/or grieving, the opportunity and privilege of working in the presence of grief is often considered a great gift. The general attitude is one of gratitude at being able to help and support individuals and family members around end of life issues with all of their complexities. Such work is likely to be life-changing, an experience that enhances and affirms one's ability to treasure the mundane as well as the magnificent, while providing an opportunity to support and hopefully improve the death and dying experiences of others (Becvar, 2001b). To illustrate the significance of this perception, according to one bereavement counselor:
We have the satisfaction of doing meaningful work; we see clients reclaim themselves and their lives; we gain wisdom; and we have endless opportunities to learn about the deeper recesses of the human heart, our own included. Many of us become especially sensitive to the fleeting nature and preciousness of life, and of how things are always in transition. The insight that change is the norm, that nothing ever stays the same, can enhance our ability to savor the sweet moments in our own lives ("This is wonderful, and it is temporary") as well as to withstand the periods of loss and inner desolation that we inevitably encounter ("This is horrible, and it is also temporary"). This heightened awareness and enlarged perspective accompany one's ongoing development as a psychotherapist. (Gamble, 2002)
Indeed, work in the area of death and dying often represents a calling or a lifestyle choice (Gamble, 2002), albeit one that requires great commitment and much emotional involvement (Papadatou, 2000) on the part of the family therapist and other professionals. Accordingly, in addition to the normal stresses associated with work in the health and mental health arena, there arc many other burdens and challenges that are unique to work with dying or grieving persons. For example, those involved with hospice focus on helping
the patient and family by offering support through the stages of grief and by keeping the patient as comfortable as possible. However, the patients' feelings of anger, rage, or fear may be unresolved at the time of death. Patients may die without experiencing either relief of pain or control of symptoms. Other patients may be removed from their homes to a hospital or nursing home because relatives can not or will not continue home care. These departures from the hospice ideal can lead to frustration and stress for the hospice caregiver. Some caregivers are motivated to enter the field by the death of a loved one and the desire to help other families. If a caregiver's grief is unresolved, the risk for stress is great. Finally, the one-way giving characteristic of hospice settings can generate negative stress. (Riordan & Saltzer, 1992)
Further, when the focus is on dying children, professionals may experience significant tension "in their struggle to balance the intense emotional feelings that exist. . . with their desire and need to be competent care providers" (Kaplan, 2000). And when grief therapy is one's chosen area, it is not at all unusual to be preoccupied with or haunted by the pain clients may be experiencing, thus placing great strain on the emotional and spiritual resources of the professional (Gamble, 2002).
Indeed, when the patients for whom one has cared die, the grief experienced by caregivers is very real (Kaplan, 2000). In the face of the losses experienced by clients, professionals also may experience a sense of helplessness (Viney et al, 1994) and hopelessness (Kirchberg, Niemeyer & James, 1998). What is more, repeated similar experiences are cumulative in their impact.
In addition to such Stressors, which are more internal in origin and experience, professionals also may be faced with challenges derived from a variety of external factors as a function of their particular work settings. For family therapists working in private practice, relative isolation is the norm. Thus, there may be a lack of support or understanding from colleagues, who even if they exist may lack knowledge of what really is involved with grief work. In contrast to professionals in institutional settings, family therapists in private practice are also more likely to have longer term involvements with their clients and to have a greater awareness of the impact of a death on the entire family system. At the same time, they are constrained from talking with others about their clients given confidentiality requirements and the absence of team members with whom communication might otherwise be permissible. In addition, the more the therapist chooses such a focus, the more likely it is that referrals for help with death-related issues will increase. However, given that private practitioners rarely focus solely on these issues, the family therapist also must be able to shift gears rather quickly to accommodate the very different needs of a wide range of clients and problems.
For those in agency or institutional settings, other issues may arise. For example, based on their review of the literature, Riordan and Saltzer (1992) have noted such problematic external factors as inadequate communication, both between staff members and between administrators and their staff; staff overloading as a function of unrealistic administrative expectations; the presence of conflict with and the absence of support from coworkers; unrealistic patient expectations; the experience of on-going, anticipatory grief and multiple losses; the consistent requirement for grieving and achieving closure; unrealistic perceptions of and expectations for professional performance expressed by other staff members; the sense of isolation; and the choice to enter this special field on the basis of inappropriate motivations.
To this list of potential issues others (Kaplan, 2000; Marquis, 1993) add the fact that caregivers often are not given adequate time or space to process their losses, either through leave to attend funerals or memorial services or relaxation of the requirement to move immediately following the death of one patient to the care of other, newly diagnosed patients. For Kaplan (2000), such professionals may be understood as "disenfranchised," or hidden grievers, given the lack of either public or institutional recognition of their experience and related needs.
Therefore, whether the family therapist is working in private practice or as part of an agency or institution, the time has come not only to recognize, but also to accommodate the various needs of service providers in this arena. For we live in an era when the demand for professionals in the realm of death, dying, and bereavement currently is increasing dramatically and promises to continue to do so in the future. In terms of general, on-going societal needs that were projected years ago, based on demographic changes and technological advances, Benoliel (1992) cites the following significant factors in this regard:
1. An aging population, with the majority of dying patients being over 65 years;
2. People living longer with diseases that in previous centuries would have killed them;
3. Indiscriminate use of life prolonging technology has created groups or people who are dependent totally on care giving services for survival, (e.g., ventilator-dependent children).
More particularly, in terms of current social events, the acts of terrorism and violence that have become frequent occurrences in our society have created a heightened focus on death and the reality of being a nation in mourning (Becvar, 2001a). In addition, traumatizing situations such as these are much more present in our lives as media coverage expands and we become observers of tragedies as they are taking place. For example, we saw the collapse of the twin towers in New York City and now have been able to watch war and its aftermath unfold before our eyes. What is more, even as those of us who are not directly affected learn the details of the lives of those who have died, the bereaved, those directly involved, also may hear their stories and the stories of their loved ones repeated over and over again. Given this change in societal context, it certainly is logical that more and more family therapists are being drawn to a focus on death, dying, and bereavement, to a desire to work with loss, whether clear or ambiguous (e.g., Boss, Beaulieu, Wieling, Turner, & LaCruz, this issue).
However, although there may be increased clinical interest, it seems important to be aware that few family therapists have chosen to study the coping skills of terminally ill patients (Wright, this issue). What is more, a review of the family therapy literature reveals that even fewer have looked at the impact on the family therapist of a focus on death, dying, and bereavement. This situation exists, "despite growing concern with the 'vicarious traumatization' experienced by professionals who consult with persons who face or have suffered great losses" (Kirchberg et al., 1998). In fact, most such studies have been conducted in the medical realm, particularly among nursing personnel. Fortunately, this body of research supplements that which has been undertaken within the family therapy arena and offers much in terms of both understanding caregiver vulnerabilities and providing suggestions to facilitate the well-being of family therapists in light of the particular stresses with which they may be faced.
COMPASSION FATIGUE AND VICARIOUS TRAUMATIZATION
Two related concepts that describe the experiences to which family therapists and other professionals who work in the area of death, dying, and bereavement are particularly vulnerable are compassion fatigue (CF) and vicarious traumatization (VT). Compassion fatigue (Figley, 1995, 2002) involves and arises as a function of exposure to both primary and secondary traumatic stress as well as the cumulative effects of stress and burnout (Gentry, Baranowsky, & Dunning, 2002). In the case of primary traumatic stress, the professional herself or himself is exposed to extreme events, whereas secondary traumatic stress occurs through exposure to such events through the direct experience of others. With burnout, the professional loses the ability to cope with daily life as a function of physical, mental and emotional exhaustion. When these three factors converge, CF may become manifest.
Professionals with CF may show symptoms similar to but less severe than those of their clients who are experiencing posttraumatic stress disorder (PTSD). They may have intrusive thoughts, or re experience the descriptions of traumatic events; attempt to avoid reminders of the traumatic events their clients have experienced; and be aware of persistent negative arousal as evidenced by anxiety, irritability, sleep disturbances, and/or excess wariness. Gentry et al. have developed a list of symptoms that professionals may exhibit as a function of CF.
1. Difficulty separating work from personal life.
2. Lowered frustration tolerance. Increased outbursts of anger or rage.
3. Dread of working with certain individuals.
4. Marked or increasing transference/countertransference issues with certain individuals.
6. Perceptive/ "assumptive world" disturbances (i.e., seeing the world in terms of victims and perpetrators coupled with a decrease in subjective sense of safety).
7. Ineffective and/or self-destructive self-soothing behaviors.
9. Decreased feelings of work competence.
10. Diminished sense of purpose/enjoyment with career.
11. Reduced ego functioning (time, identity, volition).
12. Lowered functioning in nonprofessional situations.
13. Loss of hope.
A slightly different focus is the defining distinction between CF and VT, offering an alternative view of the potential impact on family therapists of grief work. Based on the work of Saakvitne, Gamble, Pearlman, and Tabor Lev (2000), VT denotes the harmful effects on therapists that may arise from work in the area of trauma. It involves a negative transformation in the inner experience of service providers that emerges from both a "deep empathic engagement" (Gamble, 2002) with clients who are traumatized and a sense of a professional responsibility to provide help. Seen as an unavoidable occupational hazard, VT thus grows out of the pain associated with caring for and being attached to those with whom one is working or has worked. Rather than delineating the symptoms experienced by professionals, this concept places particular emphasis on the inner, subjective experience of helpers as they engage in the process of meaning making relative to their work with clients who have been traumatized:
In contrast to a symptom-focused approach, the concept of VT is grounded in constructivist self development theory (CSDT). CSDT is a comprehensive model of human adaptation to extreme stress . . . [that] provides both a framework for assessing and treating trauma survivors, as well as a map for exploring the inner changes helpers may experience as a result of their work A major emphasis of the theory is how people subjectively interpret and make meaning of their experiences: What is distressing and disruptive to one helper will be different from what is most impactful to another. (Gamble, 2002)
Accordingly, those who experience VT may feel losses in terms of their world view and their ability to feel competent; their sense of self and identity as compassionate helpers; and in the spiritual realm, as they struggle with such challenging existential issues as "the ultimate meaning and purpose of life, what happens after death, and whether it makes sense to hold hope in a world so full of despair" (Gamble). Family therapists therefore are advised to be sensitive to the different ways in which they may evidence signs that their work is taking too great a toll. Perhaps more importantly given the risks and potential for problems, a focus on prevention becomes extremely important. Indeed, one of the gifts of working in the realm of death, dying, and bereavement is the ability to use the inevitable challenges as a stimulus for creating a healthier lifestyle.
More than ever before, individuals and their families are being asked to take part in decisions about end-of-life care. Yet, most people still do not discuss end-of-life care at all, even if they are seriously ill. This fact sheet provides patients with an outline for thinking about these issues and some guidelines for discussion with their doctors, families, and loved ones. This fact sheet is also designed to help patients understand the medical, legal, and personal choices they may face in the future.
1. What rights do patients have regarding their medical treatment?
Patients are entitled to complete information about their illness and how it may affect their lives, and they have the right to share or withhold that information from others. People with cancer should also be informed about any procedures and treatments that are planned, the benefits and risks, and any alternatives that may be available. Patients may be asked to sign an "informed consent" form, which includes this information. Before signing such a form, patients should read it carefully and ask the doctor any questions they might have.
Patients have the right to make decisions about their own treatment. These decisions may change over time. In the face of worsening disease, some patients may want to try every available drug or treatment in the hope that something will be effective. Other patients may choose to forgo aggressive medical treatment. Many patients turn to family members, friends, or caregivers for advice. But it is the patient's decision how much or how little treatment to have. Sometimes a patient is unable to make this decision, due to severe illness or a change in mental condition. That is why it is important for people with cancer to make their wishes known in advance.
2. What is end-of-life care? What are advance directives?
End-of-life care is a general term that refers to the medical and psychosocial care given in the advanced or terminal stages of illness. Advance directives are the legal documents, such as the living will, durable power of attorney and health care proxy, which allow people to convey their decisions about end-of-life care ahead of time. Advance directives provide a way for patients to communicate their wishes to family, friends, and health care professionals and to avoid confusion later on, should they become unable to do so.
Ideally, the process of discussing and writing advance directives should be ongoing, rather than a single event. Advance directives can be modified as a patient's situation changes. Even after advance directives have been signed, patients can change their minds at any time.
3. Why are advance directives important?
Complex choices about end-of-life care are difficult even when people are well. If a person is seriously ill, these decisions can seem overwhelming. But patients should keep in mind that avoiding these decisions when they are well will only place a heavier burden on them and their loved ones later on. Communicating wishes about end-of-life care will ensure that people with cancer face the end of their lives with dignity and with the same values by which they have lived.
4. Why is it important to write a will?
A will is important so that patients can give instructions about distribution of their money and property when they die. Patients can name a trusted family member, friend, or professional to handle their personal affairs (also known as an Executor). It is advisable to seek the expert advice of a lawyer in drawing up a will so that the decisions made about taxes, beneficiaries, and asset distribution will be legally binding. This process can relieve a patient's family and friends of an enormous burden in case of disputes or questions about allocation of the patient's assets.
5. What is a living will?
A living will is a set of instructions documenting a person's wishes about medical care intended to sustain life. It is used if a patient becomes terminally ill, incapacitated, or unable to communicate or make decisions. Everyone has the right to accept or refuse medical care. A living will protects the patient's rights and removes the burden for making decisions from family, friends, and physicians.
There are many types of life-sustaining care that should be taken into consideration when drafting a living will. These include:
- the use of life-sustaining equipment (dialysis machines, ventilators, and respirators);
- "do not resuscitate" orders; that is, instructions not to use CPR if breathing or heartbeat stops;
- artificial hydration and nutrition (tube feeding);
- withholding of food and fluids;
- palliative/comfort care; and
- organ and tissue donation.
It is also important to understand that a decision not to receive "aggressive medical treatment" is not the same as withholding all medical care. A patient can still receive antibiotics, nutrition, pain medication, radiation therapy, and other interventions when the goal of treatment becomes comfort rather than cure. This is called palliative care, and its primary focus is helping the patient remain as comfortable as possible. Patients can change their minds and ask to resume more aggressive treatment. If the type of treatment a patient would like to receive changes, however, it is important to be aware that such a decision may raise insurance issues that will need to be explored with the patient's health care plan. Any changes in the type of treatment a patient wants to receive should be reflected in the patient's living will.
Once a living will has been drawn up, patients may want to talk about their decisions with the people who matter most to them, explaining the values underlying their decisions. Most states require that the document be witnessed. Then it is advisable to make copies of the document, place the original in a safe, accessible place, and give copies to the patient's doctor, hospital, and next of kin. Patients may also want to consider keeping a card in their wallet declaring that they have a living will and where it can be found.
6. What is a health care proxy and durable power of attorney for health care?
A health care proxy is an agent (a person) appointed to make a patient's medical decisions if the patient is unable to do so. Generally, people assign someone they know well and trust to represent their preferences when they can no longer do so. Patients should be sure to ask this person for agreement to act as their agent. An agent may have to exercise judgment in the event of a medical decision for which the patient's wishes are not known.
The durable power of attorney for health care is the legal document that names a patient's health care proxy. Once written, it should be signed, dated, witnessed, notarized, copied, distributed, and incorporated into the patient's medical record.
Patients may also want to appoint someone to manage their financial affairs if they cannot. This is called a durable power of attorney for finances, and is a separate legal document from the durable power of attorney for health care. Patients may choose the same person or someone different from their health care proxy to act as their agent in financial matters.
Where can people with get assistance with their advance directives?
If patients need help making the decisions discussed in this fact sheet, they should not hesitate to call upon family, friends, and other loved ones. Although a lawyer is not needed to complete advance directives, it is important to be aware that each state has its own laws for creating advance directives. Because these laws can vary in important details, special care should be taken to adhere to the laws of the state a patient lives in or is treated in. It is possible that a living will or durable power of attorney signed in one state may not be recognized in another. Appropriate forms can be obtained from health care providers, legal offices, Offices on Aging, and state health departments.
National Cancer Institute
U.S. Department of Health and Human Services, Aging and Long Term Care CEUs
U.S. Administration on Aging
National Institute of Health, Aging and Long Term Care, Online Interns, BBS, Asw, Lcsw, 10 Credits, Units, Hours