DEMENTIA: A SURVIVAL GUIDE FOR FAMILY CAREGIVERS

Prepared by: Susan V. Murray, CMSW, LMHP Section of Geriatrics & Gerontology Department of Internal Medicine University of Nebraska Medical Center (2007)

DEMENTIA:

CAUSES AND TREATMENTS

Dementia is not a specific disease. It is a term which describes a group of symptoms that causes a significant decline in intellectual functioning, impairing normal activities and relationships. While memory loss is a common symptom of dementia, by itself it does not mean that a person has dementia. Doctors diagnose dementia only if two or more brain functions - such as memory, learning or language skills, reasoning or judgment - are significantly impaired. Such impairments eventually lessen one’s ability to perform everyday activities like driving, paying bills, household chores and even personal care skills like bathing, dressing and eating. A person with dementia also may exhibit personality changes, loss of emotional control and behavioral problems such as agitation, paranoia and hallucinations. Dementia is most common in older adults, but is not a normal part of aging. It is caused by a number of medical conditions. In come cases, dementia can be reversed or stopped from getting worse. In others, it is permanent and usually gets worse over time. As with any other medical condition, it is essential that a proper evaluation be made when the symptoms of dementia first appear, so that appropriate treatments can be offered. Common forms of dementia include: ALZHEIMER’S DISEASE is the most common cause of dementia in older persons. It is marked by the abnormally rapid death of brain cells. The precise cause of Alzheimer’s Disease is unknown, but this is being aggressively studied worldwide by researchers. Alzheimer’s is characterized by a progressive loss of intellectual and functional abilities. On average, persons with Alzheimer’s Disease live for 8-10 years after they are diagnosed, with death often being caused by pneumonia and other infections that arise late in the disease. Current treatments focus on medications to prolong the functioning of still-living brain cells. These slow, but do not halt the progression of Alzheimer’s Disease. VASCULAR DEMENTIA is caused either by a severe narrowing or blockage of arteries that carry blood to the brain, or from strokes caused by an interruption of blood flow to the brain. The first symptoms of vascular dementia usually start suddenly, and progression is often marked by abrupt “step downs” of cognitive abilities. But vascular dementia may also slowly and progressively worsen over time. Treatment involves preventing additional strokes by treating underlying diseases, such as high blood pressure and high cholesterol, and by use of bloodthinning medications. There is some evidence that use of medications commonly prescribed to treat Alzheimer’s Disease may slow the progression of vascular dementia.

PARKINSON’S DEMENTIA. Persons with late-stage Parkinson’s Disease or “Parkinson’s Plus” Diseases (such as Progressive Supranuclear Palsy) may develop a dementia with symptoms and a progressive course similar to those of Alzheimer’s Disease. LEWY BODY DEMENTIA is marked by small protein deposits found in deteriorating nerve cells in the brain. These often appear in areas of the brain that are associated with the tremor and rigidity of Parkinson’s Disease. When these lewy bodies are spread through out the brain, they may produce symptoms similar to those of Alzheimer’s Disease as well as hallucinations and major fluctuations in alertness. FRONTO-TEMPORAL DEMENTIA is marked by a deterioration of nerve cells in the frontal and temporal lobes of the brain. Initial symptoms include behavioral and personality changes, such as poor judgment and impulsiveness. It then progresses to impairments of language and cognitive skills. Fronto-Temporal Dementia is not curable, and usually does not respond to the medications used to treat Alzheimer’s Disease. Mood and behavioral problems can be treated using standard anti-psychotic and anti-depressant medications. POST TRAUMATIC DEMENTIA may result from a single, significant head injury, or from a series of head blows, such as those suffered by professional boxers. A single traumatic brain injury may produce an immediate dementia, but symptoms vary depending on which part of the brain was damaged. Dementia from repeated head blows may appear many years after the trauma ends, and is often marked by symptoms of parkinsonism. Doctors have identified other conditions that can cause dementia or dementia-like symptoms. In the following conditions, cognitive problems may sometimes be reversed with appropriate treatment. HYPOXIC BRAIN INJURY occurs when there has been a significant disruption in the flow of oxygen to the brain. This can cause serious impairments of physical, cognitive and psychological skills. The rate and extent of recovery are unpredictable and largely depend on which parts of the brain have been affected, and how severe the injury is. BRAIN TUMOR A tumor may press on and damage brain cells, and other structures in the brain. Medical or surgical treatment of the tumor can sometimes reverse the symptoms of dementia however, depending upon the degree of brain injury sustained because of pressure on brain cells and structures, a person may be left with some degree of permanent cognitive disability. SUBDURAL HEMATOMA is a collection of blood that forms on the surface of the brain. It often results from head injury but can occur spontaneously in older persons, especially those who take blood thinning medications. Symptoms may

include numbness and weakness, slurred speech, drowsiness and mental confusion. Cognitive changes occur and progress quickly or slowly depending upon the size and location of the hematoma. This condition requires emergency treatment that may include medications and/or surgery to drill a small hole in the skull to allow the blood to drain and relieve pressure on the brain. Depending upon the degree of brain injury caused by pressure from the hematoma, a person may be left with some degree of permanent cognitive disability. NORMAL PRESSURE HYDROCEPHALUS is a condition that arises when the flow of spinal fluid in and out of the brain is obstructed, causing it to backup into areas of the brain and creating increased pressure that can damage brain tissue. NPH often results from a prior brain injury or infection, and also produces symptoms of walking difficulties and loss of bladder control. NPH may often be corrected with surgery to install a small tube (a “shunt”) into the brain to drain off the excess fluid. The degree of cognitive improvement after such treatment, however, varies among patients. ALCOHOL DEPENDENCE can lead to symptoms of dementia. Long term and/or heavy use of alcohol can damage brain cells, causing them to deteriorate and die off more rapidly than they otherwise would. Alcohol abuse also contributes to nutritional and vitamin deficiencies and liver diseases which can cause dementia symptoms. Abstaining from alcohol can often improve all of these problems. INFECTIONS of the brain and central nervous system, from disorders such as meningitis, encephalitis Lyme Disease or late-stage syphilis, will cause inflammation that damages brain cells if not properly treated HORMONE DISORDERS involve body glands that secrete and/or regulate hormones. These include the thyroid, parathyroid, pituitary and adrenal glands. Severe and/or prolonged imbalances in such hormones can lead to dementia if not corrected. METABOLIC DISORDERS such as kidney, liver and pancreas diseases, can cause symptoms of dementia, and may be progressive and irreversible if left untreated.

WHAT CONDITIONS ARE NOT DEMENTIA? DEPRESSION can make an older person appear to be demented because it can cause inattention, apathy and impair one’s ability to learn and remember new things. Persons with a significant depression, but without any underlying dementia, should regain cognitive skills if their mood is successfully treated. However, depression can also be a symptom of dementia. In such cases, treating depression is still important but does not fully restore cognition.

DELIRIUM causes confusion and rapidly fluctuating mental states. The person may also be disoriented, drowsy or incoherent, and may have personality changes. Delirium is usually caused by a treatable physical illness, such as a poisoning or an infection, and persons will often, though not always, make a complete recovery after the underlying illness is treated. MEDICATION EFFECTS Misuse or abuse of some prescription and over-thecounter medications can produce a delirium that mimics symptoms of dementia. Medications which can produce such side effects include sleeping pills, tranquilizers and anti-anxiety drugs, antihistamines and other cold medications. When such medications are stopped or decreased, the delirium and symptoms of dementia usually lessen or stop. AGE-RELATED COGNITIVE DECLINE is marked by very mild memory impairment and a slowing in the rate in which the brain processes new information. These changes are considered normal and are not considered signs of dementia. MILD COGNITIVE IMPAIRMENT is a condition in which cognitive and memory problems are more pronounced than the cognitive changes associated with normal aging, but are not severe enough to be diagnosed as dementia. Many persons with Mild Cognitive Impairment eventually go on to develop a dementia.

SOURCES: “What is Alzheimer’s Disease?” The National Alzheimer’s Association “Dementia: It’s Not Always Alzheimer’s” www.MayoClinic.com “Dementia Overview” www.eMedicine.com “Dementia” The Merck Manuel or www.merck.com “The Dementias: Hope Through Research” The National Institute of Neurological Disorders and Stroke www.ninds.nih.gov

MEDICATIONS TO TREAT DEMENTIA Approximately 75% of all cases of dementia are caused by Alzheimer’s Disease or vascular brain disease, or by a combination of both disorders. New medications are now available that have been effective in improving mental function in persons with Alzheimer’s Disease, vascular dementia, and with mixed Alzheimer’s and vascular dementia. These medications are also being used more frequently to treat a condition known as Mild Cognitive Impairment (MCI). None of these medications stop the progression of cognitive decline, but they appear to slow down the rate at which such decline occurs. This can help ease the burden of family caregivers and delay placement in a long term care facility.

WHAT MEDICATIONS ARE CURRENTLY BEING PRESCRIBED? There are two classes of medications currently being prescribed to treat Alzheimer’s Dementia: “Cholinesterase Inhibitors” such as Aricept (Donepezil), Exelon (Rivastigmine), and Razidyne (Galantamine); and an “NMDA Receptor Antagonist”, Namenda (Memantine).

HOW DO THESE MEDICATIONS WORK? Cholinesterase Inhibitors: Acetylcholine is a substance manufactured by nerve cells in the brain. It helps transmit “messages” between cells, allowing a person to think and perform tasks. Alzheimer’s Disease and vascular brain disease both destroy some of the brain cells that make acetylcholine. Cholinesterase inhibitors temporarily boost the levels of acetylcholine in the brain, thereby preserving memory and cognitive function. NMDA Receptor Antagonists regulate the activity of glutamate, another “messenger” chemical in the brain. Glutamate triggers NMDA receptors in the brain to allow a controlled amount of calcium to flow into nerve cells to help the brain process, store and retrieve information. Excess amounts of glutamate cause NMDA receptors to allow too much calcium into nerve cells, leading to disruption and death of cells. Namenda may protect cells against excess glutamate by partially blocking the NMDA receptors.

WHAT CAN I EXPECT THESE MEDICATIONS TO DO FOR MY LOVED ONE? Cholinesterase Inhibitors: From 30%-50% of those taking cholinesterase inhibitors experience a mild but noticeable improvement in attention, concentration and in the ability to perform daily activities. The average improvement was comparable to “rolling back” the disease symptoms anywhere

from 6-12 months. Cholinesterase Inhibitors appear to be most effective in the early to middle stages of dementia. NMDA Receptor Antagonists: In US clinical studies, Mementine has proven modestly effective in improving functional performance in persons with moderate to late-stage dementia. It may be most effective when used along with a cholinesterase inhibitor.

WHAT SHOULD BE CONSIDERED WHEN USING THESE MEDICATIONS? Dementia medications differ in two main areas: the number of daily doses required and the types of potential side effects. Aricept is taken once daily. Exelon, Razidyne and Namenda are taken twice daily. The most common side effects of Aricept, Exelon and Razidyne are nausea, vomiting, loss of appetite and diarrhea. The most common side effects of Namenda are dizziness, headache and constipation. When they occur, these symptoms tend to be mild and transient in nature. Side effects may be prevented by starting out with the smallest possible dose of medication, then gradually increasing it to the highest dose. When side effects do appear, they may be able to be overcome by reducing the dose for a week or so, and then increasing it again. These medications may not be appropriate for persons with certain medical conditions. Your physician can determine whether a person has any medical conditions or potential risk factors that would preclude them using these medications. As a rule of thumb, if a person is taking one of these medications - and is doing well - they should not switch to another. If they are not doing well on a particular medication (ie. having side effects, or showing no benefit after 6 months of use), it would be reasonable to stop that drug and to then start another, either in the same or a different class. If a person cannot take, or does not benefit from, any of these currently prescribed medications, it would be reasonable to consider enrolling them in a clinical research trial for medications that are still being tested.

WHAT DO THESE MEDICATIONS COST? The current cost for a one-month’s supply of Aricept, Exelon, Razidyne or Namenda is approximately $130. These medications are covered by many of the Medicare-approved prescription drug plans. The pharmaceutical companies that produce these medications may also offer them free or at a discount to persons of limited means, and without insurance coverage for medications. Speak to your physician or pharmacist about these Patient Assistance Programs, or go online to the following sites: Benefits Checkup Rx: www.benefitscheckup.org Helping Patients.org www.helpingpatients.org

HOW DO I OBTAIN A PRESCRIPTION FOR THESE MEDICATIONS? Any medical doctor may prescribe them. However, it is essential that an accurate diagnosis for the cause of cognitive problems be made first. To do this, the physician must perform a thorough physical examination, blood tests and a brain scan. The physician should also administer basic cognitive tests, and should review all the medication the person currently takes to look for possible side effects. Finally, the physician should gather from the family a detailed history of the type of onset and progression of the cognitive and functional decline, and the type of symptoms being exhibited. Such a thorough evaluation will help the physician identify and treat other medical conditions that may be mistaken for Alzheimer’s or vascular brain disease.

OVER THE COUNTER PREPARATIONS: WHAT WORKS AND WHAT DOESN’T VITAMIN E: All working cells in the body produce chemical byproducts that interact with other compounds in the cells. These byproducts (called “free radicals”) are toxic and can, over time, damage the cells. It is theorized that the damage done by free radicals may cause or contribute to the death of nerve cells in the brain which is what happens with Alzheimer’s Disease. While the body has an elaborate system to “mop up” these free radicals, anti-oxidents such as Vitamin E also aid in this clean up. Studies have shown that taking 400 IU of Vitamin E along with 500 mg of Vitamin C and a multivitamin tablet daily may reduce one’s risk of developing Alzheimer’s Disease. There is also evidence to suggest that persons who already suffer from Alzheimer’s Disease, may show a mild but measurable slowing of the progression of their dementia by taking 1000 IU of Vitamin E twice daily. Because Vitamin E has a mild blood-thinning effect, it could interact with other medications used to thin the blood. Other potential side effects include nausea, fatigue, muscle weakness, headaches and blurred vision. The most recent research studies have concluded that Vitamin E does not provide any protection from vascular disease, and may actually increase the risk of a stroke in persons who have vascular disease.

GINKGO BILOBA: Ginkgo Biloba is a compound extracted from the ginkgo tree. It is an herbal remedy commonly prescribed in Europe to improve cognitive function. Like Vitamin E, Ginkgo Biloba is an antioxident that helps the body clean up free radicals, the toxic byproducts produced by cells in the body. So far, the few studies that have been performed to test the effectiveness of Ginkgo Biloba in preventing the onset or slowing the course of cognitive decline have been small,

and mostly sponsored by drug companies with a vested interest in selling it. Therefore, more scientific studies are needed before Ginkgo Biloba can be widely recommended. Ginkgo Biloba is believed to produce few side effects. Those most commonly reported are headaches, nausea, vomiting and diarrhea. Like Vitamin E, Ginkgo Biloba has a mild blood-thinning effect and could interact with other medications used to thin the blood. Because of this, it should not be taken by a person who regularly takes Vitamin E.

NON-STEROIDAL ANTI-INFLAMMATORY DRUGS (NSAIDS): Scientists have found evidence of inflammation in the brains of persons with Alzheimer’s Disease, and speculate that NSAIDS may reduce inflammation there as they do elsewhere in the body. Research has found that individuals who have taken NSAIDS daily for more than two years had an approximately 60% reduction in the likelihood of developing Alzheimer’s Disease. While Ibuprofen is the most widely used NSAID, most, if not all, NSAIDS are the same and generic or “store brands” are equally effective and less costly. Potential side effects of NSAIDS include irritation, bleeding and ulcers in the stomach, and impaired kidney function.

ASPIRIN: While Aspirin has not been shown to reduce the likelihood of developing Alzheimer’s Disease, one “low-dose” (81 mg) aspirin tablet taken daily is widely recognized as a protective agent against cardiovascular disease, the second most common cause of dementia, and the leading cause of heart attack and stroke. Some experts feel that two 81 mg aspirin tablets per day is the most effective dose for women. Aspirin works to thin the blood, reducing the likelihood of clots. It also retards the growth of fatty plaques on the inner walls of arteries. Tylenol (Acetaminophen) offers no benefit in preventing the onset of any form of dementia. Like NSAIDS, Aspirin may produce side effects such as gastric bleeding and ulcers, and kidney damage. It should not be taken by those persons who take prescription blood thinners, or who regularly take NSAIDS or Vitamin E, unless approved by a physician.

ESTROGEN: Estrogen replacement therapy has long been provided to middle aged and older women to treat the side effects of menopause, and to prevent osteoporosis. The National Institutes of Health, through the Women’s Health Initiative, is studying 70,000 women age 50 and older to assess the long-term benefits of hormone replacement therapy in preventing dementia, heart disease and osteoporosis. The results of studies conducted so far indicate that women who take either

estrogen alone, or estrogen plus progestin are actually at greater risk to develop dementia, blood clots, stroke and cardiovascular disease. There is also now good evidence that once a woman develops Alzheimer’s Disease, estrogen does not help to either slow down or reverse the progression of the disease. Women considering hormone replacement therapy should learn as much as they can about the benefits and risks of estrogen replacement therapy, and consider their personal and family medical histories for such things as heart attack and stroke, osteoporosis, breast cancer and Alzheimer’s Disease.

ALWAYS CONSULT YOUR PHYSICIAN BEFORE DECIDING WHETHER TO TAKE ANY DRUG, HERBAL REMEDY, OR OTHER PREPARATION.

BIBLIOGRAPHY: ALZHEIMER’S DISEASE AND DEMENTIA CAREGIVING GUIDES ALZHEIMER’S ACTIVITIES: HUNDREDS OF ACTIVITIES FOR MEN AND WOMEN WITH ALZHEIMER’S DISEASE AND RELATED DISORDERS. B. J. Fitzray. Rayve Productions, Inc. (2001) ALZHEIMER’S: A CAREGIVER’S GUIDE & SOURCEBOOK. (Revised Ed) Howard Gruetzner. John Wiley & Sons Publishers. (2001) ALZHEIMER’S: CARING FOR YOUR LOVED ONE, CARING FOR YOURSELF. Sharon Fish. Waterbrook Press. (1996) THE ALZHEIMER’S CAREGIVER: DEALING WITH THE REALITIES OF DEMENTIA. Harriet Hodgson. John Wiley & Sons Publishers (1997) ALZHEIMER’S DISEASE: A GUIDE FOR FAMILIES AND CAREGIVERS. Katie Courtice and Lenore S. Powell. Perseus Publishing Co. (2001). ALZHEIMER’S DISEASE: A HANDBOOK FOR CAREGIVERS. R.C. Hamdy, Joellyn Edwards, et. al. Mosby, Inc. (1997).

ALZHEIMER’S EARLY STAGES: FIRST STEPS FOR FAMILIES, FRIENDS AND CAREGIVERS. Daniel Kuhn and David H. Bennett. Hunter House Publishers, 306 pgs.(2003) THE ALZHEIMER’S SOURCEBOOK FOR CAREGIVERS: A PRACTICAL GUIDE FOR GETTING THROUGH THE DAY. Frena G. Davidson. Lowell House Publishers. (1996). BEHAVIORS IN DEMENTIA: BEST PRACTICES FOR SUCCESSFUL MANAGMENT. Mary Kaplan & Stephanie B. Hoffman, ed. Health Professionals Press. (1998). CARING FOR AN ALZHEIMER’S PATIENT AT HOME. Kay Lovette. Practice Management Information Corp. (1999). THE COMPLETE GUIDE TO ALZHEIMER’S-PROOFING YOUR HOME. (Revised Ed.) Mark L. Warner. Purdue University Press. (2000) COPING WITH ALZHEIMER’S: THE COMPLETE CARE MANUAL FOR PATIENTS AND THEIR FAMILIES. R.E. Markin. Citadel Press. (1998). COURAGE TO CARE: A CAREGIVERS COMPANION THROUGH EACH STAGE OF ALZHEIMER’S. Joanne Parrent. Mac Millan Publishing Co., (2001)

DOING THINGS: A GUIDE TO PROGRAMMING ACTIVITIES FOR PERSONS WITH ALZHEIMER’S DISEASE AND RELATED DISORDERS. Jitka M. Zgola. Johns Hopkins Press, 154 pgs. (1987)

KEEPING BUSY: A HANDBOOK OF ACTIVITIES FOR PERSONS WITH DEMENTIA. James R. Dowling. Johns Hopkins University Press. (1995). LATE-STAGE DEMENTIA CARE: A BASIC GUIDE. C.R. Kovach. Taylor & Francis, Inc. Publishers. (1996). LOSS OF SELF: A FAMILY RESOUCE FOR CARE OF ALZHEIMER’S DISEASE AND RELATED DISORDERS. (Revised Ed.) Donna Cohen & Carol Eisdorfer. W.W. Norton & Co. (2001) LOVING CARE FOR ALZHEIMER’S PATIENTS: PRACTICAL SOLUTIONS FOR CAREGIVERS & THEIR FAMILIES. Katie Lovette. Health Information Press. (1999) MANAGEMENT OF CHALLENGING BEHAVIORS IN DEMENTIA. Ladislav Volicer et. al. Health Professionals Press. (2000) SURVIVING ALZHEIMER’S: A GUIDE FOR FAMILIES. Florian Raymond. Elder Books Publishers. (1994). TAKING CARE OF CAREGIVERS: FOR FAMILIES & OTHERS WHO CARE FOR PEOPLE WITH ALZHEIMER’S DISEASE & OTHER FORMS OF DEMENTIA. Jeanne D. Roberts. Bull Publishing Co. (1991) THERAPEUTIC CAREGIVING: A PRACTICAL GUIDE FOR CAREGIVERS OF PERSONS WITH ALZHEIMER’S & OTHER DEMENTIA-CAUSING DISEASES. Barbara J. Bridges & Jaime Temairik. BJB Publishing. (1996). THERE’S STILL A PERSON IN THERE: THE COMPLETE GUIDE TO TREATING & COPING WITH ALZHEIMER’S. Matthew Naythons & Michael Castleman, et al. Berkley Press. (2000). THE 36-HOUR DAY: A FAMILY GUIDE TO CARING FOR PERSONS WITH ALZHEIMER’S DISEASE, RELATED DEMENTING ILLNESSES & MEMORY LOSS IN LATER LIFE. (Revised Edition). Nancy L. Mace & Peter V. Rabins. Johns Hopkins University Press (2000) UNDERSTANDING DIFFICULT BEHAVIORS: SOME PRACTICAL SUGGESTIONS FOR COPING WITH ALZHEIMER’S DISEASE AND RELATED ILLNESSES. Anne Robinson, Beth Spencer and Laurie White. Geriatric Education Center of Michigan, Eastern Michigan University, Ypsilanti, MI. (1989).

WHAT IF IT’S NOT ALZHEIMER’S: A CAREGIVERS GUIDE TO DEMENTIA. Lisa & Gary Radin and Murray Grossman. Prometheus Books, 345 pgs. (2003) WHEN THE DOCTOR SAYS ALZHEIMER’S: YOUR CAREGIVER’S GUIDE TO ALZHEIMER’S AND DEMENTIA. Betty Weiss. FirstBooks Library, 232 pgs. (2004)

THE DIGNITY WITHIN: A HANDBOOK FOR CAREGIVERS, FAMILY MEMBERS AND FRIENDS OF THOSE WITH ALZHEIMER’S DISEASE OR RELATED DEMENTIA. Roger Brumbach, Pat Callone, Connie Kudlacek and Barb Vaseloff. Caring Concepts, P.O. Box 540885, Omaha, NE 68154-0885. (2004)

BOOKS BY FAMILY CAREGIVERS & PATIENTS ALZHEIMER’S: A CAREGIVER’S DAY BY DAY ACCOUNT. Robert V. Rowe. (1998) ALZHEIMERS DISEASE: CAREGIVERS SPEAK OUT. Pam Haisman. Chippendale House. (1998) ALZHEIMER’S DISEASE: THE FAMILY JOURNEY. James J. Pattee, et al. North Ridge Press. (2001) CAREGIVER: A LIFE WITH ALZHEIMER’S DISEASE. Aaron Altera. Thorndike Press. (2000) COPING WHEN A GRANDPARENT HAS ALZHEIMER’S. Beth Wilkinson Rosen Publishing Group. (1995) COPING WITH ALZHEIMER’S DISEASE: A CAREGIVER’S EMOTIONAL SURVIVAL GUIDE. Rose Oliver & Frances Bock. (1989). A DIFFERENT REALITY: AN ALZHEIMER’S LOVE STORY. Faith M. Heinemann & Robert Estell. Alliance House, Inc. Publishers. (2000) HEAVY SNOW: MY FATHER’S DISAPPEARANCE INTO ALZHEIMER’S. John Haugse. Health Communications, Inc. (1999) IN SICKNESS AND IN HEALTH: CARING FOR A LOVED ONE WITH ALZHEIMER’S. William Grubbs. Elder Books. (1995) JOURNEY WITH GRANDPA: OUR FAMILY’S STRUGGLE WITH ALZHEIMER’S DISEASE. Rosalie W. Honel. Johns Hopkins University Press. (1988) THE LAST CHILDHOOD: A FAMILY STORY OF ALZHEIMER’S. Carrie Knowles Crown Publishing Group, Inc. (2000) LIFE WITH CHARLIE: COPING WITH AN ALHEIMER’S SPOUSE OR OTHER DEMENTIA PATIENT, AND KEEPING YOUR SANITY. Carol Hickman-Owen. Pathfinder Publishing Co. (1992) LIVING WITH JOHN AND ALZHEIMER’S DISEASE. Nellie Madison-Kidd. Wellness Institute, Inc. Publishers. (2000) LOSING MY MIND: AN INTIMATE LOOK AT LIFE WITH ALZHEIMER’S. Thomas De Baggio. The Free Press. (2001)

MY GRAMMY: A BOOK ABOUT ALZHEIMER’S DISEASE. Marsha Kibbey and Karen Ritz. The Lerner Publishing Group. (1991) MY MOTHER’S KEEPER: A MIDDLE-AGED SON’S EXPERIENCES AS A CAREGIVER FOR HIS ALZHEIMER-AFFLICTED MOTHER. Bob Apperson. Authority Press, Inc.(2001) MY MOTHER’S VOICE. Sally Callahan. Elder Books. (2000) ONE FAMILY’S JOURNEY THROUGH ALZHEIMER’S. Mary Kunkel Walsh. Tyndale House Publishers. (2000) PAINTED DIARIES: A MOTHER & DAUGHTER’S EXPERIENCE THROUGH ALZHEIMER’S. Kim H. Zabbia. Fairview Press. (1996) PROFILES IN CAREGIVING: THE UNEXPECTED CAREER. Carol S. Aneshensel et. al. Academic Press. (1995) THE RELUCTANT CAREGIVER: LEARNING TO CARE FOR A LOVED ONE WITH ALZHEIMER’S DISEASE. Anne B. Hendershott. Bergin & Garvey Publishers. (2000) SPEAKING OUR MINDS: PERSONAL REFLECTIONS FROM INDIVIDUALS WITH ALZHEIMER’S. Lisa Snyder. W.H. Freeman & Co. Publishers. (1999) STOLEN MEMORIES: ONE FAMILY’S EXPERIENCE WITH ALZHEIMER’S DISEASE. Marie Cloud. iUniverse.com. (2001) WHEN SOMEONE YOU LOVE HAS ALZHEIMER’S: THE CAREGIVER’S JOURNEY. Earl A. Grollman & Kenneth S. Kosik. Beacon Press. (1997) WHERE DID MARY GO?: A LOVING HUSBAND’S STRUGGLE WITH ALZHEIMER’S. Frank A Wall. Prometheus Books. (1996) WHERE’S MY SHOES?: MY FATHER’S WALK THROUGH ALZHEIMER’S. Brenda Avadian. North Star Books. (1999) WORST DAY OF MY LIFE SO FAR: MY MOTHER, ALZHEIMER’S AND ME. M.A. Harper. Hill Street Press. (2001) YOUR NAME IS HUGHES HANNIBAL SHANKS: A CAREGIVER’S GUIDE TO ALZHEIMER’S. Lela K. Shanks. Viking Penguin Publishers. (1999)

RELIGIOUS/INSPIRATIONAL ALZHEIMER’S DISEASE: COURAGE FOR THOSE WHO CARE. Martha O. Adams. Pilgrim Press/United Church Press. (1999) CARING FOR A LOVED ONE WITH ALZHEIMER’S DISEASE: A CHRISTIAN PERSPECTIVE. Elizabeth T. Hall. Haworth Pastoral Press. (2000)

COPING WITH CARING: DAILY REFLECTIONS FOR ALZHEIMER’S CAREGIVERS. Lyn Roche. Elder Books. (1996) FORGETTING WHO WE ARE: ALZHEIMER’S DISEASE AND THE LOVE OF GOD. David Keck. (1996) GOD NEVER FORGETS: FAITH, HOPE & ALZHEIMER’S DISEASE. Donald McKim. Westminster/John Knox Press. (1997) SAFE RETURN HOME: AN INSPIRATIONAL BOOK FOR CAREGIVERS OF ALZHEIMER’S PATIENTS. Tom Batiuk & Chuck Ayers. Andrews McMeel Publishers. (1998) SYMPHONY OF SPIRITS: SPIRITUAL DIMENSIONS OF ALZHEIMER’S & ELDERLY DEMENTIA. Clint Richmond & Deborah A. Forrest. St. Martin’s Press. (2000) TEARS IN GOD’S BOTTLE: REFLECTIONS ON ALZHEIMER’S CAREGIVING. Wayne and Dasha W. Ewing. Whitestone Circle Press. (1999) TALKING TO MYSELF: THE INSPIRATIONAL JOURNAL OF A MAD CAREGIVER. Bernadette McKiernan. (1998).

HOW TO FIND BOOKS: The books listed here are in print at the time this list was prepared. To locate copies of these books, try public libraries and book stores (books not in stock may be specialordered). The following internet book sellers will mail books to you, or direct you to outof-print book finding services: www.amazon.com and www.bn.com. These web sites offer detailed descriptions of the focus and content of most books.

INTERNET WEBSITES FOR CAREGIVERS National Alzheimer’s Disease and Related Disorders Association www.alz.org Alzheimer’s Disease Education and Referral Center (ADEAR) www.alzheimers.org Alzwell Caregiver Support www.alzwell.com Alzheimer’s Research Foundation www.Alzinfo.org Hydrocephalus Association www.hydroassoc.org Lewy Body Dementia www.lewybodydementia.org Picks Disease www.pdsg.org.uk Children of Aging Parents www.caps4caregivers.org Family Caregiver Alliance www.caregiver.org National Alliance for Caregiving www.caregiving.org National Family Caregiver Association www.nfcacares.org The Well Spouse Foundation www.wellspouse.org

ALZHEIMER’S DISEASE & RELATED DISORDERS ASSOCIATIONS National Alzheimer’s Association 919 N. Michigan Ave. #1000 Chicago, IL 60611 (800) 272-3900 www.alz.org

Local Chapters/Satellite Offices: Midlands Chapter The Center Mall #205 1941 S. 42nd St. Omaha, NE 68105 (402) 502-4300 or (800) 309-2112 www.midlandsalz.org

Southwestern Iowa Office 319 Nebraska Ave. Council Bluffs, IA 51501 (712) 322-8840 or (800) 309-2112

Northeast Nebraska Office 811 E. 14th St. Wayne, NE 68787 (402) 375-1790 or (800) 309-2112

Great Plains Chapter 5601 S. 27 St. #201 Lincoln, NE 68512 (800)487-2585 www.alzgreatplains.org

Kearney Office 4009 6 Ave. #16 Kearney, NE 68845 (308) 236-2177

Panhandle Office 1517 Broadway, #122 Scottsbluff, NE 69361 (308) 635-5231

*************************************************************************************************** Big Sioux Chapter East Central Iowa Chapter 502 11th St. 162 42 St. N.E. Sioux City, IA 51105 Cedar Rapids, IA 52402 (800) 426-6512 (888) 397-9635 www.alz-sioux.org www.alzeci.org Greater Iowa Chapter 1730 28th St. West Des Moines, IA 50266 (515) 440-2722 www.alz.org/greateriowa **************************************************************************************************** Eastern South Dakota Office Northwestern Missouri Regional Office 1000 N. West Avenue #250 P.O.Box 1241: 10th & Faraon Sts. Sioux Falls, SD 57104 St. Joseph, MO 64502 (800) 272-3900 (816) 364-4467 www.alz.org/esd

www.alz-heartofamerica.org

TIPS FOR CARING FOR A MEMORY- IMPAIRED PERSON Memory aids (clocks, calendars and written notes) help a person stay oriented. Much of what you say to the person may soon be forgotten. Be prepared to repeat yourself sometimes often. Speak in a calm voice. Make brief, simple statements. Try using touch and direct eye contact when responding to emphasize what you say. Avoid presenting the person with more than one thought at a time, and limit choices (“Either/or”, rather than “multiple choice”). Distract the person from an irritating or repetitive topic by using a word from the conversation to change the subject. Try such pleasurable distractions as taking a walk or drive, looking at family photos, playing music or giving the person a simple, repetitive task to perform, such as folding towels. If distractions fail, try to ignore repeated questions. This may initially anger or agitate the person, but the questions may stop if they are not reinforced by your behavior. Ignoring is an especially good tactic when you are irritated. It may prevent the person from picking up on your irritation. Most memory-impaired persons function best when following a familiar routine in familiar surroundings. Avoid abrupt or frequent changes of routine, activities and location. Avoid discussing plans for non-routine activities/appointments with the person until just prior to the event to avoid agitation and repeated questions days in advance. Positive reinforcement and praise helps a person maintain social and self-care skills. When correcting or directing them, avoid negative commands ("Don't do that”). Use the positive focus ("Let's do this”). If the person's cognitive skills continue to worsen, closely monitor their ability to perform tasks and be prepared to lower your expectations for their performance. Allow the person to do as much for themselves as they possibly can, even if they are slower and less efficient. Take over a task completely only when they cannot perform it even with step-by-step instructions or help. Complex or risky tasks (such as driving, using appliances or managing financial affairs) may have to be assumed by others sooner. To include the person in social conversations, refer to positive memories of the past. Encourage reminiscence, as the person is able to remember past events better than present.

Suggest a word or name the person is searching for in conversation, but avoid correcting mistakes already made. Contradicting or arguing with the person may only cause upset and humiliation. Prevention is the most effective approach to reduce behavior problems. Anticipate and avoid activities and discussions that will provoke anger or agitation. Look for a reason behind a troublesome behavior. Is the person frightened, in pain, hungry or needing to toilet? Respond to the need or emotion you feel the person is trying to express. If the person becomes extremely agitated or verbally/physically threatening, remove them from the stressful situation or place. Avoid quick gestures and try to calm the person with a soothing and reassuring voice and gentle touch. Do not try to reason with the person, as their ability to understand logic and reason is impaired. If you feel threatened, remove sharp or dangerous objects from the area and stay out of reach. Leave and seek help if needed. Make note of when a catastrophic reaction occurs. Is there a pattern - ie. time of day, type of activity, specific person that can be identified? Simplify the environment by reducing extra people, clutter, noise and activity. Soft music, or holding a doll or a stuffed animal may ease agitation and calm fears in a severely impaired person. While use of medication to control behavior should be a last resort, medications may be necessary to control depression, hallucinations, paranoia, sleeplessness and extreme agitation. Discuss this with your doctor. Honestly acknowledge to the person that they have a memory problem, but confronting them with their loss of ability may lessen their sense of dignity and self esteem. Try to remind the person how much they can still do for themselves. Reassure them that they are still loved and valued. Try to discuss openly the person's memory and behavior problems with family, friends, neighbors and others who will have regular contact with him/her. People tend to respond more appropriately and offer assistance when they understand the situation. Emotional support and respite from care giving duties are essential to helping you cope. Arrange for someone else to assume your care giving duties for several hours at a time on a regular basis so you can get out and "recharge your batteries". You cannot provide good care for your loved one if you neglect your own needs.

Consider joining a self-help or support group. These offer an excellent setting in which to express your feelings and learn creative approaches to solve the challenges you face in providing care. Your local Area Agency on Aging or regional chapter of the Alzheimer's Disease Association can direct you to such groups. Be patient with yourself. Recognize that you will make mistakes and will become angry and impatient at times. Know your own limits and try not to feel guilty when you have to say "no" to others. Remember, you are only human!

Section of Geriatrics & Gerontology Department of Internal Medicine University of Nebraska Medical Center (2007)