ALZHEIMER'S FAMILY SUPPORT GROUPS: A MANUAL FOR GROUP FACILITATORS Lillian Middleton, M.S.W Clinical Specialist and Coordinator, Suncoast Gerontology Family Support Group Suncoast Gerontology Center University of South Florida Medical Center Tampa, Florida Made possible by a grant from the Administration on Aging Office of Human Development Services Department of Health and Human Services Grant # 90-A1-2157 With an introduction by Eric Pfeiffer, M.D. Director, Suncoast Gerontology Center l”-.UEPOSWQDY Published by Suncoast Gerontology Center U.S.F. Medical Center AUG ?1984 1984 " T A B L E 0'? C 0 N T E N T S R c, 5'13 PAGE M 5' ,2 Foreword .“V_“(/ _ ii 2" LI?! 7“ \ 7 Purpose and Use of This Manual fiJ,E5éwa iv Introduction I 1 Chapter I: Significance of Dementia 6 Chapter II: General Knowledge of the Disease 12 Chapter III: Self—Help and Family Support Groups 42‘ Chapter IV: Alzheimer's Family Support Groups 64 Chapter V: Establishing an Alzheimer’s Family Support Group ' 83 Chapter VI: The Suncoast Alzheimer's Family Support Group 132 Chapter VII: Beyond Family Support Groups—Other Interventions 141 Bibliography 162 FOREWORD Alzheimer's disease is one of the most cruel diseases. It Iattacks the mind and diminishes the individual’s ability to function. It has a devastating impact, not only on the afflicted individual, but on that person’s family and on the larger community as well. It constitutes one of our major health and mental health problems today. We here at the Suncoast Geron? Itology Center have made Alzheimer’s disease Public Enemy Number One. Alzheimer's disease is a disease whose causes we do not yet understand and for which there does not yet exist a specific treatment. The disease affects approximately one in a hundred persons aged 65 and increases to affect some 15—20 percent of persons aged 85. Among all the elderly aged 65 and over some 5—6 percent are affected. The disease gradually destroys memory capacity and intellectual functioning and, by stages, over the course of from 2-20 years, reduces capable men and women slowly but inexorably to total dependency, creating a grave and con— tinuing burden on family caregivers and on public and private institutions. ii ti),, pr a» , ~ ‘ ~ ' ~ w iflbng range answers to the problem of Alzheimer's disease will \have to come from basic biomedical research into the root causes of Alzheimer's disease. In the meantime, we cannot stand idly by while afflicted individuals and families struggle to cope with this staggering burden. One vitally important and highly successful approach to this problem has been the development of family support groups to assist family members of victims of Alzheimer’s disease to better understand and cope with this illness. Family members participating in such support groups for Alzheimer's disease constitutes an idea that works. 'Lillian Middleton has rendered an important service by writing a manual to assist interested professionals and lay persons to develop and "run" family support groups for Alzheimer’s disease. From her own experience with the Suncoast Alzheimer’s Family Support Group and her experience in stimulating a large number of additional support groups, she has put together a practical, step-by—step set of guidelines for all phases of operating Alzheimer’s family support groups. I have no doubt that the dissemination of this Manual will contribute greatly to our understanding and our ability to cope with the formidable, challenges of Alzheimer’s disease. Eric Pfeiffer, M.D. April, 1984. iii PURPOSE AND USE OF THIS MANUAL The purpose of this manual is to assist social service, allied health care professionals and paraprofessionals, and interested lay persons in understanding Alzheimer’s disease and the development and on-going maintenance of Alzheimer’s family support groups. It is assumed that the persons reading this manual will become the coordinators and/or facilitators of family support groups. Another assumption is that the readership may have no previous knowledge of the disease, but will have had some exposure to Alzheimer’s patients, either as professional or primary caregivers. The factual information about the disease, its medical diagnosis and management, and other medical problems that can present as dementia is written for a non—medically trained audience, though there is the expectation that the reader will already have, or will acquire more specific knowledge about medical, psychiatric, and behavioral terminology as a result of using this manual and pursuing the suggested readings. It is expected that someone contemplating working with Alzheimer’s patients and their families make it his/her responsibility for becoming as informed as possible about the disease, its mani— festations, and its management. This manual is not designed to teach group psychotherapy, group dynamics, or group processes. Nor will it make a counsellor, social worker, nurse or doctor out of the reader who is not already so trained before reading it. This manual should be viewed as an introductory, practical guide to Alzheimer’s disease and family support groups. iv INTRODUCTION Family support groups for primary caregivers of Alzheimer's patients are an outgrowth of the Suncoast Gerontology Center’s interdisciplinary clinical, research, and training programs. The Suncoast Gerontology Center at the University of South Florida is one of eleven long—term gerontology health care centers in they! United States funded by the Administration on Aging and given the mission of improving the quality of health and long term care \ \ services available to older persons.iLong-term care includes not' only the provision of restorative and supportive services to individuals who, as a result of chronic physical or mental illness, are experiencing decreased ability to function, but also includes preventive services to non-impaired elderly in order to decrease their likelihood of becoming disabled. ~N \. The Center, as a university-based and community—oriented organi- zation staffed by a multidisciplinary team, seeks to accomplish its mission through: (1) developing and testing alternative/V models of long term care; (2) training present and future service providers, such as physicians, nurses, and social workers, in the special skills and attitudes needed for working together to benefit the elderly, and (3) conducting practical and policy oriented research on health and long term care problems facing the elderly. I / r~ , \ / / Activities and programs of the Suncoast Gerontology Center address a continuum of long—term care. This continuum reflects the variety of needs of the older population, as well as a shift in focus of intervention. Traditionally, long-term care has been limited to nursing homes or other institutional care settings for the elderly.§ Thus, concern has only been focused on that 5%-6% of the over aged 65 population that require institutionalized care. Care to the other 95% has been either intermittent acute care in hospital settings or on—going outpatient care for chronic _problems. -The focus of intervention has been upon the identified4 patient, i.e., the older person experiencing symptoms or problems that brought him to the attention of the acute or long-term health care programs. Those in the informal or primary support system caring for the frail and impaired elderly have received no direct intervention or even inclusion into treatment planning for the identified patient. In a time of decreasing resources, increasing number of aged, and 'prohibitive costs of institutionalized care, a shift in direction must take place. Limited resources must be maximized, which means moving from a primary supportive, maintenance, and restorative system to an early intervention and prevention approach. The concept of care of the caregiver through the model of family support groups reflects a change in focus that (1) supports and 3 enhances the informal caregiving system, (2) is early inter— vention and prevention oriented, (3) maximizes resources, (4) reduces costs, (5) reinforces in—home as opposed to institution— alized care. Care of the caregiver shifts the focus of intervention from the identified patient to his primary caregiver who, though often willing and capable of caring for the patient, becomes gradually unable to do so because of the tremendous, but unrecognized stress that the job brings. Due to unameliorated stresses, the caregiver is vulnerable to physical and emotional exhaustion“ that brings him/her into the formal care system as an identified patient, thus, increasing the cost of primary health care. It is already known that the vast majority of elderly remain in their homes in the community throughout their lives. Thus, the informal system is already carrying the greatest burden of patient care. Contrary to popular belief, families do not dump their older members in nursing homes. Wives, daughters, sisters, husbands, sons and brothers care for them during their bouts of illness or for extended periods of time when on—going care and supervision are needed. Because of the nature of some chronic, progressively deteri- orating and terminal illnesses, major interventions aimed directly at the patient are not going to bring about significant 4 changes in the patient’s status. However, education, support, guidance and respite for the primary caregivers not only enhance their ability to care for the patient, but decrease the like— lihood of them becoming patients themselves. It allows them to remain caregivers longer, and thus postpones institutional place— ment for the patient, often at considerable cost savings. Care of the caregiver is an example of early intervention and prevention programs. Because the focus is upon a stressed, but basically well and functioning caregiver, adequate education, support, and guidance to this caregiver may prevent breakdown, either physical or emotional. Its thrust is in intervening before and in order to prevent caregiver deterioration. Care to caregivers maximizes resources in that relatively small resources are applied to individuals able to utilize them, thereby increasing the caregivers' ability to function in the caregiver role. This is achieved through the rendering of needed caregiver education, support, and guidance through a family support group where many people gain from one professional's time and efforts, and also where caregivers themselves become a resource to each other. In—home care is less costly, and it is also therapeutically more beneficial to both patient and caregiver. Premature insti¥ tutionalization of the Alzheimer's patient frequently exacerbates 5 the symptoms of the disease. These symptoms are as yet not well managed in many nursing homes, and thus increase the need for A. acute hospital care or may even hasten death of the patient; The model of care of the caregiver through Alzheimer’s family support groups is thus advocated, not only to indirectly benefit the patient, but to provide direct and on-going recognition to, and amelioration of the burden of caring for a progressively deteriorating loved one. I. SIGNIFICANCE OF DEMENTIA Alzheimerfs disease is the most common cause of senile dementia, estimated to account for at least 60%-70% of the elderly who present with the symptoms of gradual memory impairment and intellectual decline (Wells, 1978). The incidence of the disease is 5%—6% at aged 65 and over. In the United States, this accounts for about 1 1/2 million people, as currently there are more than 22 million in the 65 and older age group (Cohen, 1979). 'Although the disease is not the consequence of aging, the incidence increases with age, so that by the age of 80 the incidence is 15—20% of that elderly population (Mortimer and Schuman, 1981). The absolute number of patients with this disease is expected to increase significantly in the next few decades as a consequence of an increase in the numbers of people over the age of 65, from the current 11% to 12% of the population to an estimated 17% by the year 2030 (Plum, 1979). The disease can have its onset as, early as age 40. Alzheimer’s disease is named after Alois Alzheimer, a German neurologist who, in 1906, first described the case of a 51 year old woman whose problem began with memory loss and disorien— tation, the later onset of depression and hallucinations, and the gradual progression to severe dementia and death. Autopsy of this woman’s brain revealed cortical atrophy and physiological abnormalities of the cells of the cerebral cortex in the form of neurofibrillary tangles (Alzheimer, 1907). Initially, it was believed that Alzheimer's disease was rare, and afflicted only those under age 60. More recent research has shown that this pre—senile form of dementia shares the same symptoms and physio— logical abnormalities as senile dementia (onset after age 60), and now both are lumped under the term Alzheimer's disease (DeBoni and McLachlan, 1980). The disease can be characterized as having early, middle, and late stages through which the patient gradually progresses, but ‘fl not at a predictable rate. The range of the course of the ‘ disease is 2—20 years, with the terminal stage occurring on the average of some 8 years after the onset of the earliest symptoms (DeBoni and McLachlan, 1980). Alzheimer’s disease is the 5th leading cause of death, killing some 100,000 people each year (U.S. Dept. of Health and Human Services, 1980). There is a definite decrease in life expectancy depending on the age of onset of symptoms (Peck, 1973). The impact of the disease on the_hea1th care system is great, not“) only in numbers and costs, but in our current lack of knowledge\,J of its cause and treatment. It is estimated that as much as 58%‘ of the long term nursing home population is afflicted with this. disease (National Center on Health Statistics, 1978). We already know that nursing home care consumes the second greatest number of health care dollars for any one year — $22 billion for 1980 (Emr, 1981). The actual number and percentage of those dollars has increased enormously over the past 15 years. Unfortunately, the model of care for which we are paying these costly dollars is not the care model of choice for Alzheimer’s patients who need personal care that is best provided within the context of a psychosocially and behaviorally oriented setting. The cost of the disease to the patient, of course, is tremendous. The disease can have its onset in the wage earning years, a especially bringing financial duress to the household where the primary or sole breadwinner is afflicted. Even in cases where the non-or secondary wage earner is affected, financial loss is great, often because the breadwinner is forced to give up his or her job to take on the increasingly consuming responsibility for caring for the patient. The non-financial costs are really immeasurable. It is a great waste of minds, productivity, and human companionship. It brings about a gradual and total loss of functioning, that is physically and emotionally, extremely costly to everyone involved. Another cost is that involved in misdiagnosed and/or undetected cases of the disease. Although-Alzheimer’s disease accounts for 60%-70% of the cases of memory impairment in the over 65 age group, some 15% to 20% of the cases are caused by treatable and either reversible or allayable illnesses. The myth that "senility" goes hand—in—hand with aging is a prime reason for misdiagnosed cases that subsequently suffer the tragedy of non—productive and burdensome later years. Undetected cases result from a similar cause, for even among the aged there is a pervasive misconception that memory problems are to be accepted as the price for living into later years. Families, especially the spouses of Alzheimer’s patients, bear a Staggering cost. Total lives become consumed in the care of the patient, drastically altering life-styles. The stress of these mid—to-late life-style changes takes its toll on the caregiver’s physical health as well. Given the ages at which this disease most commonly strikes, the patient has available to him or her 'usually only one person to whom he can turn for care —the spouse— who may already have age-related illnesses. For the older victims, caregivers are more likely to.be non-existent, as spouses and siblings may have already died. The burden then falls upon adult children, now in their mid-life years, and experiencing role changes and life—style adjustments character- istic of that period. Many patients have no in-home caregivers. The financial costs to families are direct and indirect. First can be the loss of income, either that of the afflicted patient or that of the caregiver who has to give up his/her job to assume caregiver responsibility. Medical costs may increase not only for the patient, but for the caregiver as well, who because of the stresses of the caregiver role, may start deyeloping physical and/or emotional problems that require treatment. With families fortunate enough to have the means of hiring outside help, there is the cost for that too. And, for many families, there comes the eventual cost of institutionalization of the patient, which 10 at this time averages about $1,500 - $2,000 per month (Tampa Bay Area, Fla., 1983). Such institutional costs can deplete the family of financial reserves, easily leaving the unafflicted spouse destitute and dependent upon public assistance. l1 References Alzheimer, Alois. Allg. Z. Psychiat:64, 146-148, 1907. Cohen, Gene. Fact Sheet: Senile Dementia (Alzheimer’s Disease). NIMH, 1979. DeBoni, Umberto and McLachlan, Donald. "Senile Dementia and Alzheimer's Disease: A Current View." Life Sciences, Vol. 27, pp. 1-14, 1980. Emr, Marian. Progress Report on Senile Dementia of the Alzheimer's sze. NIA, 1981. Mortimer, James and Schuman, Leonard. (eds.) The Epidemiology of Dementias. New York: Oxford University Press, 1981. ‘National Center for Health Statistics: The Projection of the _Population of the United States, 1975-2050, in Census Bureau Current Population Report Series, 601. Washington, D. C., U.S. Government Printing Office, 1975. National Institute of Health. Alzheimer’s Disease: A Scientific Guide for Health Practitioners, 1980. Peck, A; Wolloch, L.; Rodstein, M. "Mortality of the Aged with Chronic Brain Syndrome." Journal of the American Geriatric Society: 21, 264-270, 1973. Plum, F. Nature:279, 372-373, 1979. Wells, C. E. Stroke. Vol. 9, 1-3, 1978. 12 II. GENERAL KNOWLEDGE OF THE DISEASE Definition In discussing memory loss, it is important to distinguish between dementia, delirium, Alzheimer’s disease, and "senility." Dementia is a generic term, not a specific disease. It refers to memory loss and intellectual decline due to the loss of brain cells or brain tissue. As such it is essentially permanent and not reversible. Dementia can be caused by a variety of diseases or conditions. Delirium is also a generic term which refers to a symptom complex which, too, can be caused by a variety of conditions. Delirium is an acute confusional state which is potentially reversible. Its onset is usually rapid, within hours or days. It results in confusion, disorientation, clouded awareness and memory impair- ment. It is the result of temporarily malfunctioning brain cells, due to internal toxins, medications, or a temporarily impaired metabolism of brain cells. The presence of delirium indicates that something medically serious is going on and needs immediate attention. The symptom of delirium can be caused by any acute infection, high fever, metabolic disturbance, acute cardio—vascular state, respiratory infections or failure, kidney 13 failure, thyroid malfunctions, the result of brain injury or tumors, a side effect of toxic substances, and drug or alcohol abuse. Alzheimer's disease, on the other hand, is a specific type of dementia or ogranic brain disease where brain cells (neurons) of_ the neocortex die off prematurely. The specific cause of thisi death of brain cells is not yet known, but the brain changes are typical and recognizable by neuropathologists as distinctive and indicative of Alzheimer’s disease. The neuronal depopulation of Alzheimeris disease results in progressive memory impairment and intellectual decline. At the present state of our knowledge this decline is irreversible and at this point in medical science, untreatable. Finally, we come to a discussion of the term "senilit ." This term has no specific medical meaning. It should be abandoned as useless and confusing. Normal aging is not associated with memory loss or "senility." Significant memory loss in old age is always associated with a specific brain disease, whether a dementia, such as Alzheimer’s disease, or a delirium. The important thing to remember is that delirium is a symptom, usually of a serious medical disorder. Dementia is an organic brain disease that may have one of several causes and of which Alzheimer’s disease is the most common cause. "Senility" is a meaningless and often inappropriately used term which should be abandoned. l4 Symptoms at Onset f Alzheimer’s disease has a gradual and insidious onset that may go q two to three years before it is formally diagnosed. Its earliest symptoms are a very mild memory impairment for recent events, which may manifest in such behaviors as misplacing things, >7forgetting appointments, a reduction in energy and commitment to' SWOrk endeavors, a mild social withdrawal, a mild but chronic .'confusion, an unwillingness or reluctance to engage in new activities, a lack of spontaneity and an easily triggered irritability. Medically, at this point, no findings are signi- ficant. However, as the disease progresses, the symptoms of memory impairment, disorientation, and confusion worsen. Memory impairment is for recent events — what happened this morning, what happened yesterday. This is because the loss of brain cells prevents the patient from laying down new memory traces. Disor—' ientation occurs first in reference to time, and then to place. Patients usually are unable to give the complete date, the day of the week, the month, the year. They even have difficulty stating time of day, i.e., morning or afternoon, or time of year , i.e. season. Disorientation to place results in the patient getting lost, especially if he goes to an unfamiliar environment. Much later on the patient has difficulty keeping oriented to person, 15 first to correctly identifying others and in the severe stages, keeping orientation even to himself. Memory impairment is exhibited initially in the patient’s forgetfulness. However, he gradually becomes unable to learn new things and to follow sequential steps. This may show up in the woman who can no longer follow a recipe, or the man who gets lost on the highway. The inability to perform simple calculations usually becomes evident first when the patient’s checkbook shows gross errors or is left unbalanced. ‘Eventually the patient’s ability to recall things from long term memory is lost. Along with this more severe mental deterioration is a beginning loss of control of bodily functions, usually first those that require voluntary initiation, (bladder and bowel), and then those of an involuntary nature, (swallowing). The ability to complete thoughts goes, as does eventually the ability to recall words and appropriately name objects. Current Medical Understanding The cause or causes for the premature and progressive dying off of brain cells or neurons in the cortex is not yet known. There are, however, definite physiological findings upon autopsy of the brain afflicted with Alzheimer's disease that differentiate this organic disease process from others. .An abundance of neuro— fibrillary tangles are found at the nerve synapses of brain cells. These neurofibrillary tangles, of course, interfere with and prevent the normal transmission of electrical impulses between the svnansp- 16 Senile or neuritic plaques are another physiological abnormality of Alzheimer’s disease. These plaques are lesions containing amyloid, an abnormal protein not usually found in the brain. There are several leading theories of the etiology of the disease that are under current scientific investigation. Because the physiological findings of the disease are similar to two other diseases that effect memory and intellect, namely, Kuru and Creutzfeldt-Jakob disease — for which a slow acting virus is the cause, it is thought that Alzheimer’s disease may also be virally ‘induced (Goudsmit, Marrow, et a1., 1980). ,Another theory of cause is a biochemical deficiency. Research has demonstrated a significant decrease in the activity of the enzyme choline acetyltranferaSe in the brain tissue of Alz- heimer's patients upon autopsy (Davies and Maloney, 1976). This enzyme plays a major role in the transmission of electrical impulses at the brain cell synapse. There has been a correlation made between this change in neurochemical activity and changes both in cognition and brain pathology. Diagnostic findings using measures such as the CT scan and EEG are observable, though not definitive for diagnostic purposes. Diffuse cortical atrophy and ventricular enlargement often present upon computerized topography. The electroencephlogram reveals a diffuse slowing of brain patterns. There are also statistical evidence and research findings to indicate a possible genetic link to Alzheimer’s disease. A study in Sweden revealed that the risk of senile dementia among relatives of patients in the study was 4.3 times as great as in the general population (Larson, Sjogren, Jacobson, 1963). In another study, (Heston, 1977), it was shown that among 30 patients with Alzheimer's disease, a significantly elevated frequency of Down's Syndrome and blood disorders such as leukemia and Hodgkin’s disease were found among family members as compared with the general population. These findings have led to the speculation that a genetic defect may be causing a disorgani- zation of the cellular structures that have been implicated in Alzheimer’s disease. In a broadened follow-up study, Heston came to the same findings, as well as evidence indicating that the earlier the onset of dementia, the more severe the course of the disease, and the more severe the disease, the greater the frequency in family members (Heston, et al., 1981). A fourth leading theory as to the etiology of Alzheimer's disease is that of an overabundance of trace metals in the brain. In particular, aluminum has been singled out as a culprit in several studies of animal and human brain tissues. 'In one study on animals, the injection of aluminum salts in brain tissue induced the development of neurofibrillary tangles. Autopsy reports of brain tissue of patients dying from Alzheimer’s disease revealed an increase of 10—30 times the normal concentration of aluminum (Crapper and Kirshnan, 1976). It is unclear yet how toxic amounts of aluminum enter the brain. One theory is that it gains access 17 18 through the blood stream with the help of a parathyroid hormone which increases the absorption of aluminum from the gastro- intestinal tract (Mayor, Keiser, Makdani, and Ku, 1977). Of all the leading theories, the excess of aluminum is the most controversial due to studies that have found no significant difference between the amount of aluminum or parathyroid found in the brain cell tissues of Alzheimer’s and non—Alzheimer’s patients (Shore, et a1., 1980). Research and clinical studies continue not only in trying to Iidentify the cause(s) of this disease, but at developing treat? ment based on current findings about physiological abnormalities. For example, a number of studies have implicated a malfunction of the cholinergic system that is involved in both memory and learning. Clinical studies are underway to determine whether the addition of choline through the bloodstream might improve memory (Corkin and Growdon, 1980). Closely linked with this are experiments using physostigmine, a drug that blocks the breakdown of the neurotransmitter, actylcholine, which is found deficient in the brain cells of Alzheimer’s patients (Davis and Mohs,, 1979). Studies are also going on that attempt to remove the excess of aluminum from brain cells, Since studies have shown that the development of neurofibrillary tangles caused by the injection of aluminum salts is not necessarily irreversible. Also, studies of brain metabolism are being conducted. These studies are based on the concept that regional glucose utilization reflects the 1 l9 functional state of the brain and that cognition changes depend on disturbances in metabolic activity in specific brain regions (Sokoloff, et al., 1972). Medical interventions at this point consist of routine and on—going patient-care to treat intercurrent diseases to which the Alzheimer's patient is subject and to which his susceptibility increases as the disease progresses. Medical intervention also includes the pharmacological treatment of some of the secondary psychiatric manifestations of the disease - the depression, the agitation and restlessness, the hallucinations and the paranoia. Medical intervention means minimizing invasive procedures and hospitalization, since both have traumatic impact upon the demented patient, and often exacerbate the symptoms of confusion and disorientation. Medical interventions also include coun- selling with the caregiver regarding coping and patient manage— ment strategies as well as assisting the caregiver in becoming involved in an Alzheimer’s family support group for on-going support, guidance and education. Medical Work—Up — Differential Diagnosis 9 / '/' / / 1’ L ' I ‘ ~ . \‘ 1‘ The accurate diagnosis of dementia is a real challenge for physicians that involves a differential approach of ruling out the reversible disorders that may account for up to 20% of all cases in which older persons appear confused and forgetful. In 20 addition to a detailed history, a work—up for dementia must include a mental status exam, a physical examination, a neuro— /~9 . logical examination, and laboratory work.i‘%l ? ‘u'" 1 In obtaining the detailed medical history, particular attention is paid to the onset of memory impairment symptoms, gradual and progressive, as opposed to sudden and acute; past and current medical illnesses that might impact memory, such as a history of strokes, arteriosclerosis, diabetes, thyroid problems, etc.; a thorough review of current medications; history of psychiatric disorders or recent life—style disturbances/losses, both emo— tional and physical; and current social and environmental situations. An assessment of the patient’s mental status is essential in a work-up for dementia. The Short Portable Mental Status Question- naire (Pfeiffer, 1975) is easily administered and scored, and gives a valid indication of the degree of memory impairment. This 10 item instrument assesses current orientation to time and place, ability to recall sequential data (telephone #, street address), recall from remote memory, ability to update infor- mation, and ability to handle serial calculations. Scoring is adjusted for level of education. A person with a minimum of a 12th grade education can miss up to two items without evidence of memory impairment. Three to four errors indicate a mild degree of memory impairment; five to seven errors, moderate impairment; and eight to ten errors, severe impairment. A person missing all items not only has gross memory impairment, but is not able to PATIENT IDENTIFICATION Date of Birth Initials month day year LE PFEIFFER A E mmth SHORT PORTABLE MENTAg STA US QUESTIONN IR ( PMSQ VISFTDATEI I fiEfiflEfiBETTQCfié15&257&£;T&211RETEQEJZEEQTERIZJEFEJTFTJEJTJJQEESfi """"" column (correct/error)! All responses, to be scored correct, must be given by subJect without reference to calendar, newspaper, birth certificate or other memory aid. CORRECT ERROR I. WHAT IS THE DATE TODAY? MONTH DAY YEAR (Score correct only when the exact month, day and year are given correctly.) 2. WHAT DAY OF THE WEEK IS IT? DAY 3. HHAT IS THE NINE OF THIS PLACE? TScore correct if any correct description of the location is g:ven: 'My home", accurate name of town, city, or name of residence, hospital, or institution (if subject is institutionalized) are all acceptable.) 4. WHAT IS YOIR TELEPPDNE NLMBER? (If none, see 4A below) (Score correct when the correct number can be verified or when subject can repeat the # same number at another point in questions.) 4A. WHAT IS YOUR STREET ADDRESS? (Ask only if subject does not have Telephone.) 5. How OLD ARE YOU? AGE: (Score correct when stated age corresponds to date of birth.) 0. HHEN HERE YOU BORN? MONTH DAY YEAR (Score correct only when exact month, date and year are all given.) 7. HHO IS THE PRESIDENT OF THE UNITED STATES NOW? (Only the last name of the President is required.) 8. WHO HAS THE PRESIDENT BEFORE HIM? (Only last name of previous President required.) 9. WHAT WAS YOUR MOTHER'S MAIDEN NAME? (Does not need to be verified. Lcore correct if a female name plus last name other than subject's last name is given) I). SUBTRACT 3 FRCM 20 AND KEEP SUBTRACTING 3 FRm EACH NEH NIMBER ALL THE HAY MN. :Ihe entire series must be performed correctly in.order to be scored correct. Any error in series or unwillingness to attempt series is scored as incorrect.) - TOTAL MMB ER ERRORS lADJUSTMENT FACTORS: A) SUBTRACT I FR04 ERROR SCORE IF SUBJECT HAS HAD ONLY A GRADE SCHOOL EDUCATION..................... 8) ADD 1 TO ERROR SCORE iF SUBJECT HAS HAD EDUCATION BEYOND HIGH SCHOOL............................. C) SUBTRACT i FRCM ERROR SCORE FOR BLACK SUBJECTS (REGARDLESS OF EDUCATIONAL CRITERIA).............. TOTAL ADJUSTED ERRORS INFORMATION OBTAINED BY: DATE Copyri rum-E. Pfeift'er, 1974. Deficit in Elderiy Patients. 433-441, 1975. All rights reserved, Reference: E. Pfeiffer, A Short ortable Mental Status uestionnaire for the Assessment of Organic Brain ournal of the American Geriatrics Soc1ety, Voi.23: 22 participate in any meaningful way in the history giving aspect of the work-up and an informant must be obtained to get this data. ; The physical examination is routine for anyone presenting with a medical problemfk All systems are checked, paying particular attention in thetolder patient to the lungs, heart, urinary tract, and sensory organs. The physical examination is combined with laboratory tests to rule out medical problems. A complete SMAC is indicated in order to get blood chemistry levels, to check the BUN and creatinine. Thyroid function tests, the T3‘ gand T4 are routine, as are urinalysis, CBC, and 312 levels. An RPR serologic test to rule out neurosyphillis is indicated, as are an EKG and a chest x-ray. The neurological exam, in addition to the routine in-offiCe procedures to determine reflex, perception, coordination, and gait disturbances, should be followed by a CT scan and an EEG to rule out brain lesions, normal pressure hydrocephalus, evidence of old strokes, and electrical brain flow disturbances. If early findings raise the question of a psychiatric disturbance, then a psychiatric evaluation is also included in the work-up.' Particular attention is paid tO‘depression, which in the elderly can mask dementia. All of the preceeding data is compiled and reviewed in an attempt to rule out a variety of treatable causes of memory impairment, confusion, and disorientation. Among those treatable causes are the following. Treatable Causes Infections - urinary, respiratory, either viral or bacterial in nature; pneumonia; tuberculosis; endocarditis; Metabolic Disturbances — diabetes; electrolyte im- balances; liver malfunctions; nutritional deficiencies; (312, folic acid, niacin), dehydration; hyperkalemia; pernicious anemia; renal failure; hypoglycemia; Cardio—vascular diseases - arteriosclerosis; history of strokes; hypertension; TIA's; congestive heart failure; myocardial infarction; vascular occlusions; pulmonary emboli; vascular insufficiency; Drug Toxicity - the result of taking contraindicated medications, or medications in dosages inappropriate for an older patient, or drugs that actually bring on confusion and dis- orientation in the elderly — namely the anticholinergics, anti-hypertensives, psycho— tropics, sedatives, barbiturates, hypo- glycemics, diuretics, analgesics; Toxic substances — such as carbon monoxide; methyl alcohol; certain pesticides; Brain disorders — trauma to the head; tumors (primary and metastatic); normal pressure hydrocephalus; viral or fungal infections; subdural hematomas; intracerebral hemorrhage; concussion; brain abscess; meningitis; 23 24 Neurological disorders - neurosyphillis; Parkinson’s disease; multiple sclerosis; Thyroid dysfunction — hypo and hyperthyroidism; Alcohol and/or drug abuse — Chronic, life-long abuse leads to a variety of problems, both nutri- tional and organic, that effect memory and orientation. Recent late-life alcoholism may effect memory and orientation more because of the older person’s reduced tolerance to alcohol. (Adapted from Fact Sheet, NIMH, Feb., 1979, Gene D. Cohen, M.D. See also "Senility Reconsidered: Treatment Possibilities for Mental Impairment in the Elderly, NIA Task Force, gggg, July 18, 1980, Vol. 244, No 3, 259-263.) There are psychiatric, social, and environmental problems that can effect memory and orientation, especially in the older patient, and these conditions also need to be closely assessed. Sensory deprivation is one of these. As a person ages, the senses of smell, taste, hearing, vision, and touch diminish. They are also often beset with illnesses that effect the senses directly or indirectly. Diabetes, for example, has profound long ‘term effects on vision and touch. Glaucoma and cataracts are age related diseases of the eyes. Taste buds diminish in their activity, which leads to a loss of pleasure in eating for many older people or a tendency to over salt their food, both of which produce medical complications. Hearing losses occur with age, as do hearing obstructions, primary among which is the accumulation of excess wax in the ears. Smell too, diminishes, which also effects appetite and eating habits. Some major illnesses such as 25 stroke, may effect all senses, including the ability to speak. The point is that even moderate sensory losses coupled with social isolation that occurs to many older persons as their spouses, friends and neighbors die, lead to a poverty of stimuli to which the cognitive self can respond. This lack of stimu- lation can, over time, lead to confusion and disorientation, and apparent memory impairment — all of which can be reversed if the underlying sensory and social losses are either corrected or compensated for. A common psychiatric disturbance, though often untreated in the elderly, is depression. The elderly are especially prone to depression as a consequence of the number of losses — social, environmental, physical, emotional, financial, role identity -that they experience, and many times experience multiply. Depression is not recognized, even by themselves. It is seen as a case of the blues, or a disengagement from activities, or becomes manifested in vague and chronic physical complaints, or simply a lack of energy and motivation - often accepted as natural for old people. Acute, prolonged depression, of course, can present symptoms akin to dementia - poor concentration, inattentiveness, emotional irritability and lack of spontaneity, forgetfulness, confusion, social withdrawal — but so too can mild to moderate depression. It is this latter type that goes undetected normally until some external event occurs in the patient's life - such as a spell of physical illness that may lead to hospitalization — that 26 exacerbates the symptoms, sometimes dramatically so. Then, all of a sudden, the patient is diagnosed as "senile" or "demented" without benefit of psychiatric evaluation and treatment. Depres- sion is frequently very responsive to a trial regimen of anti- depressants coupled with either individual or group counselling. Because of the dementia-like symptoms of depression in the elderly, it is often referred to as pseudodementia, and close attention must be given to differentiating it from true organic dementia. Attached is a table from a 1979 issue of the American. Journal of Psychiatry which carefully and clearly demarcates the 1 two illnesses. Dementias All bf the preceding causes of memory impairment, confusion, and disorientation are potentially treatable at this time in medical science. Even though some conditions, such as diabetes or cardiovascular disease, cannot be cured, they can be medically managed so as to minimize their negative impact on memory and, orientation. There are several causes of dementia which are not reversible, in part or in whole, but they are physiologically different from Alzheimer’s disease. Multi—infarct dementia is second to Alzheimer’s disease in producing irreversible brain damage and memory impairment. It is an organic syndrome resulting from numerous _small or massive strokes that have left dead areas in 27 .mmm .a .AmsmF .xqznv 5 .oz .mmp .~o> .xg~wqcoxwm to “nausea cmudhme< cg =mflucmemuouammm= .mfifimz .u mmfiumzu, xHfi:o_quu hafiwe_m >H~:o_gufln mo wxmmu co mocmEuoLqu noon xaucmumqmcou nmqwsqm Lo mxmma co mocmEQOguma Cw xgwqwnmwuw> umxumz amawzc: mUOMQmQ ofiuflomam yo; mama xuosmz cosaou mgcm>m no mtowuma ofiuflumqm no; mama xposmz mucm>m umma no; case mum>om mace xAAmzm: wacm>m acmomu hog mmo~ xmoamz mpm>mm >d~mam3 mucm>m,maosmu ucm acmomu no; mmo~ xuosmz fimzm: no; qmzwzc: mpmzmcm mxmumfle cmago mucmfluma cofigmucmwuo to mama“ co :zocx u.cou: m>flm cmauo mucmfluma .coflumucmqmo mo mamma co . acmzcmgg mgmzwcm queuummz . amowaxu mumzmcm :zocx u.coe: xaasmu x—«mzm: tequmgucmocoo ucm coqucmua< Um>umwmua dam: :maLo coqdmuucmocoo new cowucmuu< monhuzzmm>o 4<3pUM44Msz az< .m>H»quou .>xozuz oh ouh<4mm mmx3pqdwcooo coqaucaumxu Lo xuqum>mw new: mqnwgmasoo xqfimam: gofl>mcmm m>flu_coou Lo xuflum>mw new: “cmanmcoocfl cmduc uofl>mcwm umcflmgmu cmduo mq_qu ~m_oom acmcqsoaa cam xapmm cmamo mq—flxm qmfloom Lo mmo; zoq—mcm vcm m__nm~ dooLL< m>_mm>uma cmdgo mmcwzo m>_.ommu< UQCAmocooca ammqam cmamo mdcmq.wm mmmp_mqu Lo wmcmm occuam m.moficzsaou xfldmam: m.:m_umm @mugkwfluxu mowv.,ou .ouo .mmaoc co x—mu macm_.mm a: ammx o“ xh. do: on mucqumm mxmmu Ehouuma od mama:;dm mflcwqgmm mxmmd mqaeqw co>m anLgma eg.ag0Lum m~uaqq mme m_cmflamm qwq>whd um>mzoz mucmscquaeooum cg acmqqmu mucm_dmm mmgzqqmu .zowfico_z macmfidmm xuqqqnwm_u ammocoo mucmquwm >y«~_nmmfln m~_mmcaem w_coq~mm mzom> xqqmzw: Um~_m.mu Coquocnumxn m>quficmoo Lo macqmfiaeou mucmwumm xaqmsw: acquocaumxv m>_uflcmoo Lo mucwmaaeoo macmwamm mmo~ m>fluflcmoo Lo mqauqa cqmaaeou xqqmzw: macaqumm mmofi m>flaacmou mo cuss cwmaaeoo xdfimsm: mgcm_.mm mo~>w OngMHco>mm m50H>muQ mo xuoumflc oz coesoo coqeocsumxu oflgumflcoxma wzofl>mha Lo xuoamq: mmuaou “JOLGJOHLH weouQE>m no coflmmmumouu 30am Hmwco amagm msoaaexm Lb cofimwmhmoaa uflamm acmaom mfl Q~mc Amofiuma wuoLmn acqumusc aco~ Lo xqqmam: wEouQExm acmsow m“ mam: Hmowums whoLwn coqamuan uponm mo mEouQE»m maqedq nacho cane“: xqco umumu ma :mo hmmco tawwflomua meow ca“: Uwamu mo cmo umwco xuflgw>mm ucm coqaocaumxu no mhmzmc: cmamo xqumu xuwum>mm wag ucm coflaocsumxu Lo mumZm mxmzqm xaflsmu >mohmH: oz< ummaou 4tommon patient ”"N reagtimmeare withdrawal, angry responses and irritability and' ‘depression. Common 93E§91V§§w¥§§¢fiions during this stage, in which the disease often goes undiagnosed, are those of impatience with, and anger toward the patient, feeling that the patient is deliber- ately causing problems, is simply being inattentive. External factors such as stress, the marital relationship, physical illnesses are used to explain the behaviors and memory aber- rations. Because of lack of understanding of what is going on, the caregiver at this point, in response to the patient’s symptoms, even brings on catastrophic reactions in the patient by‘ overwhelming him beyond his capabilities. Stage II lasts many years, and is characterized by an increase in memory loss, time disorientation, and lack of spontaneity. Disorientation to place occurs, often resulting in the patient’s wandering and getting lost. Psycho-motor agitation, especially 35 restlessness at night and sleep disturbances arise. As the patient’s memory becomes more and more impaired for recent events, he increasingly confabulates. in an effort to explain what he cannot recall. There is beginning evidence of memory impairment for remote events. Later in this stage, perception and expression difficulties begin, as do gait disturbances. Social skills begin to disintegrate and the patient does socially inappropriate things. This disintegration of social skills coupled with an increased emotional lability and impulsivity canq create major management problems for the caregiver. Conse- _queH£I§, catastrophic reactions are likely to increase. Near the end of this stage, the patient starts to become disoriented to other persons, to not recognize familiar friends, neighbors, and relatives. At this stage, caregivers must lower their expectations of the patient, recognize the need for and provide supervision, take over many of the activities formerly done by the patient, and learn to anticipate and develop techniques for ayoiding or A \{[be W: ("E'\“‘ k i minimizing catastrophic reactions. Use of psychotropics are indicated at this point to help make some of the patient’s‘ behaviors manageable. Stage III also has an uncertain time span, but it is demarcatéd by a significant increase in the patient's motor agitation; appetite loss, eating difficulties, and subsequent weight loss, incontinence, first of the bladder, then of the bowel; increase in catastrophic reactions; the onset of secondary illnesses 36 (pneumonia, congestive heart failure); and muscular twitches with possible seizure, usually during the last six months. The insurance of safety and provision of all personal activities of daily living are mandatory for the patient at this stage. If the patient remains at home, outside help to relieve the primary caregiver is necessary. Placement of the patient in an institution is often considered and acted upon.‘,fir , '\ / {IV (’1‘) I"; \ . Behavior and Management Problems All stages of Alzheimer’s disease present symptoms and patient behaviors that create potential management problems, and forever tax the caregiver in skills of understanding, coping and manage— ment. Although it is not the purpose of this manual to provide exhaustive information on coping and management skills, (see The Thirty Six Hour Day, Rabins and Mace), it is necessary for the coordinator of an Alzheimer’s family support group to know the major patient behaviors and management problems so as to be 6’“? 7.‘(/" L responsive to caregivers needs in planning support group programs and activities. In the early stages of the disease, even before it is diagnosed, and sometimes the reason why the disease goes undiagnosed at this stage, is the_patient's own denial of his memory impairment. Denial, a Common and normal defense against any loss, is psycho— logically adaptive in helping a person protect himself from a painful reality that he is not yet ready to accept. Prolonged 4’\ r/\ .t/ \ M77“ 4 ‘ (/5 37 denial of memory impairment becomes a problem when the patient insists on doing things that he can no longer handle, like driving a car or handling financial transactions that could be costly to himself and his family, or persisting in operating hazardous machinery. The patient’s denial of memory impairment also makes it difficult for his caregiver to rightfully assume responsibilities formerly the patient's or to even recognize the / I l l . , . . . A“ real impact of the patient 5 disability. 3»? , .1 Misplacing things, initially harmless, can have grave conse— quences for both the patient and his family. As a patient's memory worsens, he forgets where he puts things, and may develop a suspiciousness and outright paranoia that others are stealing from him or playing tricks on him. Danger arises when the patient acts on his belief that others are robbing him, either by directly taking action against the suspected person, or becoming a nuisance to the authorities in reporting these imagined ,1, occurrences. In addition, valuables can be lost or given away. _>~~” In ‘1 Because of the inability to recall correct sequence of events, and the gradual inability to perform serial calculations and do abstract reasoning, a person with Alzheimer's disease cannot be left responsible for handling his financial and business affairs. Arrangements to have a spouse, or another relative or a third party to do so has to be done early on in the disease when the patient can still voluntarily give the responsibility over through a durable power of attorney. Making this arrangement early on prevents the necessity of an embarrassing and emotione ally stressful incompetency and guardianship hearing later on. ‘ l As the person becomes disoriented not only to time but also to Ké§> place, and as his agitation and restlessness increase, he has the tendency to wander and to get lost. This wandering may first occur in the middle of the night when orientation problems and restlessness tend to increase. The dangers of wanderlng are many, from personal injury to the patient, to his causing injury to others, especially if he still has access to the car. i. am . . _ . ", Sleep disturbances frequently go hand-1n—hand With the agitation, restlessness, and wandering. The problem is most significant for the caregiver who experiences disturbed sleep as a consequence x ; ~ L- K of the patient's nocturnal behavior. When caregivers cannot get \ rest, they become less capable of handling both the physical and emotional stresses of caring for the demented patient.i g”In the later stages of the disease, eating disorders often arise, «j not only in the loss of appetite and swallowing difficulties, but i \. earlier on in the actual mechanism of handling food. Adaptations in types of food offered, methods of preparing food, and even food supplements must be considered. It becomes a challenge to the caregiver to maintain adequate nutrition for the patient. a