Understanding and Caring for the Person with Dementia A Practical Guide for Caregivers

1 SIXTY PLUS SERVICES

Sixty Plus Services provides support, education and evaluation to enhance the well-being of older adults and their families. Piedmont Atlanta Hospital established this program in 1987 to address the unique needs of geriatric patients and their family caregivers. Piedmont continues to recognize the importance of providing comprehensive geriatric services and support for the community. Services include: 2 • Aging Information Helpline • Caregiver Resources • Comprehensive Geriatric Social Work • Dementia Support, Education, and Evaluation Program • Guidance Through the Insurance Maze • Care Transitions

TABLE OF CONTENTS

Introduction...... 4 Disease Overview...... 5 Caregiving Tips and Techniques...... 10 Managing Daily Activities...... 13 Understanding and Managing Behaviors...... 20 How Dementia Impacts the Family...... 25 Caring for the Caregiver...... 28 Legal and Financial Issues...... 29 Hospitalization and Transition Back Home...... 32 End-of-Life Care...... 34 Spiritual Care...... 36

Acknowledgements...... Inside Back Cover 3 INTRODUCTION

Understanding and Caring for the Person with Dementia: A Practical Guide for Caregivers is written primarily for family members caring for a loved one. It is also useful for training staff and volunteers who provide care in nursing homes, hospitals, adult day centers, assisted living facilities and private homes. The basic caregiving techniques are similar, regardless of the setting.

Information has been gathered from many sources, including current publications, websites, lectures and seminars, and real-life caregiving experiences. The guide is comprehensive and includes practical tips to help in the day-to-day care of the person with the disease.

The first chapter provides definitions and an overview of dementia. While most older adults with dementia have the Alzheimer’s type, others have dementia from different causes. This chapter 4 also describes the stages of dementia, along with suggestions for working with physicians.

Chapter 2 offers practical caregiving tips including suggestions for communicating with the per- son with dementia. Chapters 3 and 4 focus on daily activities and managing behavioral problems.

Chapter 5 addresses the impact of dementia on the family and provides information to help caregivers cope with the emotional issues they may face. Chapter 6 discusses the importance of caring for the caregiver.

Legal and financial issues are covered in Chapter 7. Chapter 8 explains what can happen during hospitalization, and the importance of having a good discharge plan back to the home.

The guide concludes with information about end-of-life care and spiritual care in Chapters 9 and 10. DISEASE OVERVIEW • Mild cognitive impairment – This is a distinct medical condition which causes What Is Dementia? problems learning new material, trouble Dementia is a syndrome characterized by a recalling previously learned information gradual onset and continuing decline in a and increased incidence of forgetful- previously alert person, resulting in impaired ness. People with mild cognitive impair- ability to perform daily activities. The decline ment do not necessarily develop Alzhei- most often affects memory and at least one mer’s disease, but they are at increased of the following domains of cognitive func- risk for it. tion: language, perception, vision and space • Dementia – This is an umbrella term refer- perception, calculation, judgment, abstrac- ring to the loss of intellectual function and tion and problem solving. Caring for some- progressive cognitive decline. There are one with dementia requires flexibility, prob- many different causes. Some dementias lem solving, some trial and error, and a great are reversible; most are not (see list below). amount of creativity and patience. • Senility – An obsolete term used to de- scribe mental weakness associated with Definitions old age. This term is no longer used and has no medical meaning. • Cognition – Refers to mental processes like thinking, understanding, remember- Common Causes of 5 ing, judging and problem solving. “Cog- Progressive Dementia nitive decline”suggests an impairment in any of these processes. • Alzheimer’s disease – This is the most • Memory loss or forgetfulness – Many peo- common cause of dementia. It is char- ple experience some mild memory prob- acterized by tangles and plaques in the lems or forgetfulness, having temporary brain. It cannot be diagnosed with cer- difficulty recalling someone’s name or tainty until autopsy, but the presentation where an item was left. This often occurs of symptoms follow a typical pattern, with normal aging. The memory lapse is leading to the diagnosis. Memory loss brief, and the information can usually be is the most common feature; behavioral recalled. This kind of forgetfulness does changes cover a broad spectrum, from not worsen over time and does not serious- apathy and social withdrawal to paranoia, ly interfere with daily functioning. The vast combativeness and extreme agitation. majority of older adults retain their ability • Vascular dementia – Also known as multi-in- to learn, remember and solve problems. farct dementia, this disease is caused by Problems with memory can have many the blockage or narrowing of the arteries, or causes, including infection, reaction to stroke, which results in the interruption of medications, depression and vitamin de- blood flow to the brain. Usually the onset is ficiency. Profound memory loss is never a abrupt, with a step-wise decline. History of normal part of aging. stroke or Transient Ischemia Attack (TIA), a temporary decrease in blood supply to the brain, is common. • Parkinson’s disease – Many people with • Mixed type dementia – It’s possible to Parkinson’s will never get dementia, but have multiple causes of dementia at the some will develop it in the later stages of the same time. Brain autopsies of demented disease. The primary symptom of Parkin- patients show that many have evidence of son’s disease is impaired motor function. multiple causes, such as Alzheimer’s, vas- • Lewy Body dementia – This condition is cular dementia and Lewy Body dementia. characterized by cognitive decline as well as motor impairments which resemble those Diagnosis of Dementia present in Parkinson’s disease. Lewy Body With so many causes of dementia, the first dementia is caused by widespread protein step is to have an evaluation and diagnosis by deposits in deteriorating nerve cells in the a physician. Basically, diagnosis of dementia brain. Early symptoms tend to fluctuate, but is made by: the dementia progresses rapidly. Hallucina- • The exclusion of other medical problems, and tions, delusions and paranoia are common. • The presence of progressively worsening • Frontotemporal dementia – Also known as memory, judgment and cognitive deficits. frontotemporal lobar degeneration, this diagnosis represents a group of diseases The diagnostic process usually includes a that affect the frontal and temporal lobes thorough medical and neurological evalu- of the brain. Onset is often under age 65. ation. Internists will often assess and diag- Changes in mood and behavior are more nose, but family caregivers may wish to have 6 pronounced than memory loss. a specialist physician take on this role. Geriat- • Aids dementia complex – A rapidly pro- ric psychiatrists and neurologists commonly gressing form of dementia which typically see many demented patients. In addition, the occurs after years of HIV infection. patient can be seen for extensive testing by • Normal pressure hydrocephalus – This is a neuropsychologist who will then work with a type of “fluid on the brain” which can medical doctors to decide upon the most ap- result in abnormal gait, incontinence and propriate treatments. memory loss. However, if there is early di- agnosis and treatment, these symptoms Presently there is no laboratory test to diag- can be reversed. nose Alzheimer’s disease, but with other types • Chronic Traumatic Encephalopathy (CTE) of dementia existing tests are more conclusive. – Associated with repeated head trauma, Frequently, family caregivers are questioned often due to athletic injuries, this type of de- at length about the behavioral changes they mentia has only recently been identified as have observed before the diagnosis is made. a distinct disease. Symptoms can include depression, memory loss, and aggression. Usually the diagnosing physician will give the • Alcohol related dementia – Long term, news to the patient. This should be done in excessive use of alcohol can affect the the presence of family members and take brain as a neurotoxin. Mental confusion into account the stage of dementia of the pa- and memory loss are the most pronounced tient as well as the individual’s personality. symptoms. The explanation of the disease should match the person’s current ability to understand future events regarding household mainte- new information. When presenting this in- nance, cooking, money management, fill- formation, simple and non-threatening lan- ing prescriptions and using the telephone. guage should be used, and the focus should Getting lost, even in familiar places, is be on the person’s areas of competence, common. Families will notice that some rather than deficits. bills aren’t getting paid, and birthdays are forgotten. But the ability to perform the A dementia diagnosis can be very difficult usual activities of daily living, like bathing, for family caregivers. They may experience a dressing, toileting and eating remains in- sense of mourning and grief, similar to news tact. Explanations of medical issues and of a death. But they need this information as treatments are not well comprehended. soon as possible so that they can begin to Social skills are still good, causing others to plan for the future. question whether there really is a problem. People at this stage respond to visual cues Routine follow-up with the person’s physi- and can remember a series of actions. cian is important for health maintenance and • Moderate dementia – Memory, judgment, treatment supervision. The physician can insight, reasoning and planning are very help the patient and family adjust to chang- clearly impaired in this stage. The per- ing behaviors and learn about what to an- son will have trouble with familiar tasks. ticipate as the disease progresses. Geriatric Grooming often declines, and using the 7 social workers at Sixty Plus can also provide bathroom independently is inconsistent. education and support. At this stage, the person is unable to com- prehend his own safety needs. Falls be- Stages of Dementia come more frequent as the person doesn’t The symptoms displayed with progressive recognize the risk of slippery floors or ob- dementia may vary in severity and order stacles in the way. Strangers are welcomed of appearance. There is a fluctuation of into the home. Fraudulent telemarketers abilities for the person with dementia, of- can easily take advantage of the person. ten depending upon the time of day. Some Language problems increase, with word days will seem much better, making family finding as well as understanding what oth- caregivers wonder if the diagnosis is correct ers are saying. Suspiciousness and par- – only to be followed by days in which the anoid delusions may become frequent. person is much worse. There is no new learning at this stage. Social appropriateness declines, and the Most people with dementia will generally decline person may dress or apply make-up in over time, passing through the following stages: odd or flamboyant ways. In addition, tact- • Early/mild dementia – In the beginning less comments to others can be frequent, there is a slow functional decline result- because the person has lost his social “fil- ing in problems with recent memory, ters.” As the person passes through this judgment, reasoning, planning and minor stage, generalized confusion becomes problems in conversation. People in this more obvious. Actions can be performed stage are unable to organize or plan for in response to physical cues, and the per- son may repeat the action many times. the disease process. Wandering away and getting lost becomes 2. Antidepressants: The basic functions of more common. There is minimal ability to these medications is to lift the person’s use the telephone. It is dangerous for the mood and to encourage greater focus on person to live alone. the surrounding environment. • Severe dementia – In this stage, people are- 3. Antipsychotics: These medications re- totally dependent upon others. They usual- verse or reduce psychotic behaviors ly have bowel and bladder incontinence. like auditory and visual hallucinations, The ability to walk may be impaired, and as well as delusions (fixed false beliefs). there may be difficulty chewing and swal- There are older antipsychotics, such as lowing. Self feeding becomes very slow. Haldol, and newer medications that are People lose weight because their nutri- known as atypical antipsychotics, like tional status declines. Weight loss leads to Seroquel, Zyprexa, and Risperdal. physical weakness and more frequent falls. 4. Complementary or Alternative Treatments: They may become easily distressed with There are many nonprescription medica- some tasks and may resist care. Showering tions, herbs, and natural formulas that are can be frightening, so keeping the person marketed to improve memory and atten- clean becomes more challenging. People tion. Before trying any new therapies, con- with severe dementia become less mobile sult your health care professional to learn which makes them more prone to pressure about any potential risks or side effects 8 sores and infections. with your current prescribed medications. • End-stage dementia – Eventually all body- • Ginkgo: Supplements from this plant are systems will be affected. People in this linked to improving the blood flow to the stage no longer walk and speech be- brain. Studies have found that in some comes unintelligible. They are bedbound people, ginkgo may modestly boost mem- and resist swallowing food, which they will ory and cognitive speed. Several studies often pocket in their cheeks. At this junc- have shown that ginkgo can help with ture most family caregivers seek hospice memory problems caused by dementia, care for their loved one. especially vascular dementia. Ginkgo is also a natural blood-thinner and therefore Medications should be used with extreme caution with While current medications cannot stop or medical anti-coagulation therapy. reverse the disease process, some medi- • Ginseng: Supplements are made from the cations may slow or lesson the symptoms. root of the plant and have been called the Dementia medications fall into four broad “king of all herbs.” Asian ginseng is wide- general categories: ly used throughout the world to improve 1. Memory Enhancers: Aricept, Namenda, memory, boost immunity, build strength, Exelon (pill or patch) and Razadyne are and improve overall health. Let your health commonly prescribed. These drugs influ- care professional know if you’re taking it ence certain brain neurotransmitters, like as it can cause changes in blood sugar serotonin and dopamine. They are most and blood pressure. effective the earlier they are prescribed in • St. John’s Wort: The extract of the fresh or • Become as knowledgeable as possible dried tops of these yellow flowers is made about the medications the person is tak- into supplements which can help with de- ing. An informed caregiver is the doctor’s pression or mild anxiety. best resource. Keep a current medication • Valerian: Supplements are made from the log for the healthcare team to review. This root of this plant. Valerian has been used is especially important when a new medi- as a safe alternative to prescribed medica- cation or different dose of a current medi- tions for insomnia, restlessness, and other cation is started. Jot down any new or dif- sleep problems. ferent behaviors you’re observing. • Rosemary and Lavender: Two wonderfully • Ask questions. Whether it’s the doctor, aromatic herbs with essential oils that are nurse, pharmacist or other healthcare pro- associated with enhanced mental focus fessional, ask clarifying questions so you and clarity. understand why the medication has been ordered, what positive effects you hope General Considerations to see, and which negative side effects to with Medications watch for. • Medications are generally thought of as safe, as long as they are taken as pre- Basic Rules of Medications for Dementia scribed by healthcare professionals. 1. SAFETY FIRST 2. Start low (dose), go slow, but get there Someone with dementia may have lost the 9 ability to correctly dose themselves; there- 3. Keep medications as simple as possible fore, the caregiver needs to assume the 4. Write out instructions clearly responsibility of medication management. 5. Bring ALL medications to EACH doctor Much depends on the person’s stage of appointment dementia. A simple pill box may be all that 6. Use only one consistent pharmacy is needed to ensure that someone with 7. Ask before you crush, dissolve, refrigerate, mild dementia gets the right medication at or store medications the right time, on the right day. However, 8. SAFETY FIRST if the person has more advanced demen- tia, he or she could potentially underdose And finally, a note about the cost of medica- or overdose on harmful drugs. Caregivers tions. Many medications are expensive, par- need to make sure that all medications are ticularly for people with dementia who often secured and unavailable to the person. take multiple prescriptions for their various They must ensure that all medications are symptoms. They may also have other chron- taken correctly. All expired or discontinued ic health problems for which they are tak- medications should be safely discarded. ing medication. Make sure that the person You can call your local pharmacy to ask you’re caring for has prescription drug cov- when and where to bring old medications. erage through Medicare Part D or a similar Please do not flush them down the toilets insurance plan. into our water system – they’re not neces- sarily environmentally friendly. CAREGIVING TIPS • Those affected by dementia are adults and therefore should be treated with respect & TECHNIQUES and dignity, even if their behavior seems childlike. Having a loved one with dementia can be • Not everyone with dementia will exhibit all of overwhelming. The day-to-day problems of- the symptoms associated with their partic- ten seem the most distressing. The disease ular disease, whether it’s Alzheimer’s, Lewy slowly destroys the person’s ability to think, Body, vascular, frontotemporal or another remember events, concentrate, control im- type of dementia. Moreover, not every per- pulses and make judgments about the activ- son will experience the disease the same ities of daily living. The loss of these abilities way as others who have it. The course of creates perplexing behavior which is difficult the disease and the rate of decline will vary for others to understand. greatly from one person to another. • People with dementia experience reality The impact of the disease cannot be mini- differently than unaffected people. Arguing mized. Due to the progressive loss of intellect will not change that reality. Constant cor- and the resulting confusion about reality, the rections to try to bring the person back to person with dementia may become increas- reality won’t work. People who have severe ingly fearful and insecure. This leads to with- memory loss may become agitated if they drawal into still-familiar and comfortable set- feel they’re always being told they’re wrong. 10 tings and routines. Individuals with dementia It’s better for the caregiver to practice rem- become dependent on their caregivers as iniscence. Remembering and discussing anchors and guides in a challenging world. meaningful events of the past can promote closer communication and lift the person’s Many people with dementia don’t realize that self esteem. they are forgetful. As a result, they may deny • Many caregivers find it helpful to enter the recent actions or behavior and become angry reality of those with dementia, no matter when confronted. In some people, the rec- how bizarre it may seem. For example, if ognition of their losses leads to depression, the person with dementia insists his son is especially in the earlier stages of dementia. his father, the son can go along with the misperception and try to have a pleasant, This behavior can be better understood with reassuring conversation. knowledge of the disease process. Often, it • Creativity and flexibility are necessary in the can be controlled through special care tech- caring process. If one approach does not niques. The use of simple communication work, be ready to try another. Techniques tips will improve the quality of life for those can be recycled over time. with dementia and others around them. • The person with dementia becomes more dependent as the disease progresses, Basic Principles for requiring increasing supervision. The Understanding Dementia caregiver needs to compensate more and • People with dementia function best in a more for the loss of skills. calm environment with familiar, simplified • Each task and activity should be simplified routines of daily living and without the bur- as much as possible, broken down into den of making choices. small steps. The person should be encour- and suggesting the car may have been stolen aged to take each task one step at a time, can be a more compassionate way to handle with steady reassurance and help from the what is almost always a devastating loss for caregiver. the patient. This way, too, the caregiver stays • Most people with dementia are not stub- on the side of the patient without becoming born, mean, suspicious or ungrateful on the one who is taking away the right to drive. purpose, nor can they be taught to remem- ber recent events or moral lessons. The Communication Tips disease causes the troublesome behavior; • Speak slowly and clearly. Don’t expect a the person is not being intentionally diffi- quick response. Use short sentences and cult. simple messages, and give the person time • Don’t talk about the person as if he isn’t to process the information. there. Don’t laugh at inappropriate behav- • Present one idea at a time. Don’t try to give ior or speech. too much information in one sentence. • Even though dementia makes people forget • Understand that the person with dementia and lose their capacity to understand what may say one word and mean another. You is being said, they still notice the emotional may have to guess at the correct meaning, responses of those who are caring for them. but try to clarify your guess with the person They can be frightened and hurt by anger – you could be wrong. or impatience. Similarly, they respond well • Don’t approach from behind and startle 11 to calmness, reassurance and patience. the person. • Caregivers should set realistic expecta- • Stand in front or in the direct line of the tions for themselves and for the person person’s vision. Touch his arm or shoulder with dementia. gently to get or keep attention. Maintain eye contact. Ethical Lying • People with dementia can be sensitive to Although it may be hard for family members nonverbal communication. The tone of to actively lie to a loved one, ethical lying, your voice and your facial expression are also known as therapeutic lying, is an essen- as important as the actual words. Use a tial skill to develop. Dementia patients need normal tone of voice in a calm manner. to be kept safe, and they need to be closely • Use gestures and visual cues or aids to monitored for all of their activities of daily liv- convey your messages. Try using more ing. This often requires being less than truth- than one of the senses to communicate, ful in order to accomplish a task that needs such as touching as well as talking. Do not to get done. In many circumstances, it’s also use gestures that threaten the person. kinder to ethically lie than to be complete- • Whenever possible, avoid questions that ly honest. For example, reminding someone put the person on the spot, such as quiz- that a deceased loved one has died can con- zing about names of family members. tinually make the person upset and sad. Avoid “why” questions. Not knowing the answers embarrasses the person. Gen- Ethical lying can also help to ease difficult tly cueing with necessary information is situations such as when the patient needs usually more helpful and much kinder. to stop driving. Having the car “disappear” • It’s extremely important to avoid letting the • Don’t accuse the person of lying. Some- person with dementia make important de- times people with dementia will confabu- cisions that affect other people. Matters late, meaning that they will fill in the gaps that concern money, living arrangements, in their memories with fabrications that and hired help should never be decided by they believe are completely true. When someone with dementia. you suspect that this is happening, relate • Remember that the person with dementia to the underlying feeling that the person is losing the ability to judge between safe is expressing, whether it’s happiness, fear, and unsafe conditions. Evaluate each situ- frustration, etc. ation and do not allow the person to be in • Don’t be upset if the person makes unkind a potentially dangerous situation. remarks about you or is tactless and of- • Create a safe home environment. Re- fensive. This can be very hard for caregiv- move all hazards and obtain equipment, ers, but it’s important to try to step back alarms and other safeguards that will help and realize that dementia causes the per- the person. son to misjudge situations and imagine • Simplify everything – the environment, things that aren’t true. tasks, conversation and routines. Elim- • Similarly, the person may make offensive inate distracting noises and activities statements to strangers when out in public. as much as possible. Remember that It’s helpful in these situations to discreet- change can be upsetting. ly hand a card to the offended stranger 12 • Encourage the person to be as indepen- which states “Please forgive this gentle- dent as possible, depending upon the man. He has dementia and is not always stage of dementia. For example, the person in control of his behavior.” People under- may be able to dress alone if the clothes stand once they know about the demen- are laid out in the right order. tia; chances are, they’re also dealing with • Use distraction. A temporary change of it in their own families. subject often solves the problem and di- • People with dementia lose the ability to keep rects the person’s attention away from the track of time. This often makes them anx- undesirable behavior. The person’s forget- ious. They might feel deserted when only a fulness may work in your favor. few minutes have elapsed, so reassure as • Demonstrate by modeling correct methods much as possible. for those with more severe dementia. For • Encourage the person to participate in ac- example, show the motions of brushing tivities which are pleasurable, with little or teeth when it’s time for this daily task. Or no chance for frustration. Keep in mind, at mealtime, demonstrate eating motions. though, that people with dementia often • Join in the person’s specific reality. Often, have a short attention span. Problems in people with dementia are unable to live in daily living may seem very challenging for the present. They feel safer talking about family caregivers. The most common diffi- the past, and sometimes they believe they culties arise in the following areas. are living in the distant past. Go with wher- ever they are. MANAGING DAILY should take place gradually, to wean the person off of the amount of alcohol they ACTIVITIES had been accustomed to drinking. It’s best to take this step with advice from the The Home Environment person’s physician. Sudden withdrawal of Because people with dementia are unable to alcohol from a heavy drinker could result make sound judgments and decisions about in serious health problems. potential danger, it’s essential to create a sim- ple, safe and familiar environment for them. Bathing Make a thorough inspection of all areas of the It’s common for persons with dementia to re- home, including the surrounding yard and fuse to bathe. They may be afraid of the water neighborhood, to identify possible hazards. coming hard and fast out of the showerhead, Pay special attention to the proximity of busy or they may resist the invasion of privacy that streets and traffic patterns. comes with bathing in front of a caregiver. • Reduce clutter. Often they believe that they’ve showered al- • Keep furniture in the same place; don’t ready, so it’s preposterous to think they have rearrange. to shower again. Caregivers need to be espe- • Clear common pathways. cially creative to accomplish this task. • Lower the thermostat on the water heater. • Try to follow the person’s previous routines. • Place gates or barriers at all stairways. Consider the time of day and type of bath- 13 • Secure or remove potentially dangerous ing that was preferred – showers, baths, items. Many people with dementia live sponge bathing, etc. in homes that have guns. These must be • Have everything ready before starting. removed for the safety of everyone. • Do one step at a time, talking through • Hide a spare key outside the house. each step. • Use a very large key ring to identify keys easily. • Be calm and gentle; don’t rush and hurry. • Supervise smoking. • Avoid discussing whether a bath is needed. • Place a lock at the bottom of the door, near • Use only a few inches of water in a bath, the floor. or a fine, gentle warm spray in the shower. • Use night lights. • Always check the temperature of the water. • Place locks on all the windows or use child- • Avoid bath oils or anything that may make proof door knobs. the tub surface slippery. • Remove control knobs from the stove. • Use safety devices like grab bars, tub • If the person with dementia has a routine seats, and rubber mats. Using a seat and cocktail time, continue the routine but do a hand-held shower attachment, to gently not make real cocktails. Use the same hose and rinse, can be less frightening for glasses, ice, cherries etc., but use apple the person. Introduce the warm shower juice or ginger ale instead of spirits, or water gradually, starting at the feet and non-alcoholic beer or wine. Put the fake moving up the body. beverage into a real whiskey or wine bot- • If the person seems unsteady, use an easi- tle to complete the subterfuge. However, if ly grabbed belt around the waist to quickly the person has been a heavy drinker, the fend off a fall. introduction of non-alcoholic beverages • Remove locks from the bathroom door. • Don’t leave hair dryers, electric razors, etc., Meals and Nutrition within reach. It can be hard to make sure that someone • Check for skin rashes and sores while bath- with dementia is eating a well-balanced diet. ing the person. The disease makes people unable to rec- • Showering with the person may be a solu- ognize the sensations of hunger and thirst. tion. Wear bathing suits if appropriate. What is a favorite food one day may be avoid- • If the person has always washed hair in ed the next. People will rarely say that they the shower, try to keep up this routine. For are hungry; yet if food is put in front of them, women who have always gone to a salon they’ll eat every bite. Sometimes sweet foods for shampoos, try to maintain these out- are craved, and the demented person will ings for as long as possible. If it becomes only want candies or cookies. At other times too difficult to go to the salon, arrange for a inappropriate items may be eaten, such as hairdresser to come to the home. soap or other household items. Monitoring • Use body lotion on dry skin. This can be a what the person eats and drinks can be time very relaxing experience for the person with consuming, but it’s one of the most import- dementia, sort of like getting a massage. ant aspects of caregiving. Proper nutrition re- • To avoid agitation, if the person adamantly duces the risk of constipation, dehydration, refuses to bathe, wait and try again later. and vitamin deficiency. These conditions One good bath or shower per week is usu- contribute to increased confusion and a de- ally fine; just make sure to monitor the skin 14 cline in physical functioning, so they must be for problems, especially if the person is in- avoided as much as possible. continent. Consulting with a nutritionist can be helpful Oral Hygiene in planning balanced, creative meals. The Tooth brushing is often avoided by people nutritionist can often make suggestions, such with dementia. They resist doing it, and they as adjusting the thickness and consistency of don’t want anyone to try to do it for them. liquids to be served. One solution is to use toothettes for effective oral hygiene of teeth and gums. Use with a Evaluation by a speech pathologist is indicat- diluted hydrogen peroxide solution. If the ed when the person begins to have trouble person fights this, stop for a while and try to swallowing. resume later. If the person consistently re- • Avoid trying to convince the person that fuses to cooperate with oral care, fresh fruit, a meal has been eaten. such as apples, can aid in cleaning teeth. • For those with more advanced dementia, Mouthwashes in small amounts may also be use simple, one-step instructions, such as helpful. “Pick up the fork,” “Put the food on it,” and “Raise the fork to your mouth.” Regular dental examinations are as import- • Limit the number of food choices the per- ant for the person with dementia as they are son has to make. for anyone. Consider going to a dentist who • Put only one utensil and only one food in specializes in treating those with memory front of the person at a time. loss. Sixty Plus Services can recommend • Serving finger foods is easier and less messy. such practices. • Encourage the person to sit up in a com- to maintain hairstyles, beards, and make- fortable position. up the way that the person liked to appear • If the person has trouble chewing or has before dementia developed. Social customs poor fitting dentures, grind or cut the food should also be respected. into very small pieces. Serve foods with • Encourage maximum dressing and grooming a soft consistency, such as applesauce, independence for as long as possible. cottage cheese or eggs. • Don’t rush or hurry the task. • Beware of the temperature of food that’s • To reduce choice, remove clothes that are served; demented people lose the ability seldom worn from the closet. to sense hot or cold and could burn their • Use simple garments with large zipper pulls, mouths. few buttons or Velcro fasteners. • Fill glasses only half-full, but encourage • Use cardigan sweaters instead of pullovers. frequent fluid intake. Sweat suits can simplify dressing. • Remind the person to eat slowly. • Be sure clothes are not too long or full as • Suggest frequently that each bite be chewed they may become a tripping hazard. thoroughly. • Lay clothes out in the order in which they • You may need to remind the person to should be put on. swallow the food. • If necessary, use constant repetition to re- • Try to serve favorite foods for a greater in- mind the person of the next step. centive to eat. • Use nonskid shoes, such as washable rub- 15 • Avoid placing condiments on the table ber-soled shoes with Velcro fasteners, or until requested as they may be used in- slip-on shoes. appropriately. • To reduce confusion, use a plain plate with Toileting and Incontinence no design. Dementia will eventually cause the person to • Use a bendable straw if the person has become incontinent. The ability to recognize trouble drinking. or respond to the body’s urges is lost. People • For someone who has trouble using regular also forget where the bathroom is located, utensils, experiment with adaptive devices even if they’ve been in the same house for like curved spoons, sectioned plates and years. They also forget what to do when they non-skid surfaces. can find the bathroom. • Secure all items that look like food such as dog biscuits, flower bulbs, artificial flowers, Family members and other caregivers may etc., so that they aren’t eaten by mistake. feel awkward or embarrassed when assisting • If the person only wants to eat sweet foods, with toileting. This is normal, and it usually sprinkle vegetables, meat, fish and other subsides over time. savory items with sugar or sugar substitute. A matter-of-fact, calm, and reassuring man- Dressing and Grooming ner with the person with dementia is the The self-esteem of the person with dementia best approach. is still very important. Past grooming hab- • Post a colorful sign on the bathroom door to its should be considered as caregivers help help the person identify the room. their loved ones get ready for the day. Try • Set a regular schedule for using the bathroom. • Monitor mealtimes and foods consumed so • Be sure to clean the person properly, using that you can predict when it’s time to use a wash cloth or baby wipes to avoid skin the bathroom. irritations. • Watch for restless behavior, which may be a signal that the person needs to use the Exercise and Leisure Activities bathroom. Walking provides good exercise and may • Respect the person’s privacy as much as relieve tension and stress in people with possible. dementia. It may also help to increase the • Assist with removing or adjusting clothing person’s appetite. Simple exercises that en- as necessary. courage a range of motion in the arms and • Help the person get in the right position, if upper body can help maintain optimal mus- needed. cle functioning. • Give cues if the person doesn’t know what to do. The confused person has a short attention • Talk through each step. span and may become easily frustrated • If you take the person to a public restroom, when faced with multiple-step tasks or activi- go together – don’t let the person enter the ties. Keep things simple. Gardening, painting restroom alone. If you’re a female caregiver with water colors or finger paints, drawing, or with a demented gentleman, use the ladies coloring with chalk or crayons are good ways room and if necessary hand out cards to for confused people to express themselves. 16 startled strangers stating that the person Large, colored wooden beads or blocks strung has dementia. Do the opposite if you’re a on to rope can be another good activity. man caring for a woman. Many places now have “gender-free” handicapped bath- Research shows that activities done in the rooms, so use them as well. past can still resonate with an older person who has advancing dementia. Retired busi- When a confused person suddenly loses ness executives may like to sit at a desk with bowel or bladder control, this should be eval- a phone (better to have it disconnected), with uated by a physician. Possible causes may files filled with paper. An old keyboard and be a urinary tract or other infection, dehy- computer screen may be interesting to the dration, side effects of medications, prostate demented person who was internet-savvy. problems or another medical condition. Older women who spent years as homemak- ers may enjoy baby dolls in cribs, or domes- Suggestions for Incontinence tic activities like folding laundry or sweeping. • Avoid using laxatives but encourage a high-fiber diet. Musical activities are usually very successful • Restrict fluid intake two hours before bedtime. with individuals with dementia, whether they • Use incontinence aids such as disposable are making the music themselves or just listen- briefs and pads for beds and chairs, or ing. Music can help them to recall pleasur- condom catheters for men at night. able moments from the past. They frequent- • Dress the person in manageable clothing ly remember the words to songs learned in and consider eliminating underwear. childhood. Dance music from their youth might encourage them to jitterbug, waltz or ingful to the person with dementia. Family twist around the room. Many people even in members provide commentary about the advanced dementia can still sit at a piano to people and places in the photos. The videos play a favorite hymn. Quiet, familiar music in can then be shown over and over to the per- the background is often soothing and calming. son with dementia. • Many people regularly attend adult day pro- Books, newspapers, and magazine articles grams specifically for those with dementia. can serve as cues for reminiscence and a Although it’s common for them to resist ini- great springboard for family conversation in tially, they eventually like the new routine which the demented person may still partic- and social activities. This also provides a ipate. Certain television programs can be of consistent time for caregivers to get a break. great interest, whether they’re classic mov- • Some people will hallucinate and imagine ies, historical shows, or even cartoons. An- that deceased family members are visiting imal programs are often much beloved by them. They will have forgotten that these those with dementia. loved ones have died. The hallucinations • Rocking chairs can be calming, but make usually are quite comforting and pleasur- sure they don’t cause the person to become able for the person with dementia and ac- unsteady or fall as they get up. tually improve the quality of life. To encour- • Encourage dancing. age this experience, it’s helpful to make • Have the person participate in household life-size photos of the deceased and hang 17 chores, such as folding towels, raking them in the person’s bedroom. leaves, or sorting objects. • Some TV shows can be upsetting to some- Sleeping one with dementia, particularly violent, Sleep disturbances are common and may be suspenseful, or horror shows. Remem- responses to dreams, inadequate exercise, ber that the person can no longer sort out strenuous activity, dozing during the day, what’s real and what’s fiction. News stories confusing night with day, or getting lost at can also be alarming, so caregivers need night on the way to the bathroom. to closely scrutinize what’s being watched. • Give the person a snack and play some • Leaf through family photo albums to en- quiet music. courage past memories. • Try a backrub for a relaxing effect. • Keep activities on an adult level, though • Make sure the person uses the bathroom children’s toys can be usefully adapted in before going to bed. the later stages of dementia. • Put reflective tape around the bathroom door. • Family members can team up with the • Use blackout shades. person to play familiar games – cards, • See that the person gets sufficient exercise bingo, board games, etc. during the day – but not too much. • Having a special place in the garden for dig- • If nothing else works, try medication rec- ging and working with plants and flowers ommended by the physician. can be very enjoyable for both the person with dementia and the caregiver. • “Therapeutic biographies” use home videos that focus on old photographs that are mean- Driving • Having a history of car accidents, from Driving is a complex task that requires the fender-benders to more serious incidents ability to make and execute split-second de- • Confusing the gas and brake pedals cisions. Dementia affects a person’s ability • Hitting curbs to process many different pieces of informa- • Incorrect signaling tion at the same time. Driving and dementia • Riding the brake don’t mix. • Poor judgment about distance, particularly making left turns Some states have strict laws, requiring doctors to contact the Department of Motor Vehicles When caregivers need to take away the car whenever someone is diagnosed with demen- keys, it needs to be done as sensitively, but tia. This is not the case in Georgia. Generally firmly, as possible. Most individuals with in this state it falls to families to ensure that dementia don’t understand why they can’t someone stops driving. drive. They’re likely to become furious. They need reassurance that they won’t be left iso- Very often families refuse to stop the person lated and that other forms of transportation from driving because they know it will cause will be available to them. It can be helpful much distress. Driving is equated with in- for the family to “blame” a health care pro- dependence, and it is terribly hard to give fessional for the decision so that they don’t have to be the bad guys; some doctors will 18 up. In addition, more responsibility falls on the family when someone can’t drive. This work with the family and be willing to take means time taken from work to get to a doc- the responsibility for insisting that the person tor’s appointment, help with grocery shop- stop driving. ping, pick up medications, etc. It’s usually best to completely remove the Nevertheless, when someone has demen- person’s car once they get a diagnosis of de- tia, driving creates too much risk. People get mentia. If it is kept at the home, at the very lost, even in neighborhoods where they’ve least the vehicle should be permanently dis- lived for many years. They can go missing, abled. All car keys need to disappear. driving miles and miles away until the police find them while their families are terrified Doctor-Recommended Driving back home. And in the worst case scenarios, Assessment Programs demented drivers cause accidents in which If you feel that your loved one is still driving they injure or kill themselves or others. well, in spite of the dementia, err on the side of caution and get confirmation by a profes- Poor driving: warning signs sional. A hospital-based driving assessment • Getting lost in familiar areas program is the best source for this type of • Not observing traffic signs evaluation. A doctor’s order is needed to be- • Making slow or poor decisions in traffic gin the process. The assessment is • Driving either too slow or too fast performed by an occupational therapist with • Getting angry or confused while driving special expertise in driving rehabilitation. • Swerving into wrong lanes In-office tests are administered to gauge the person’s reaction time, hearing, vision, and recall; if these tests are passed, then the per- son is taken out for a driving test in a spe- cially equipped car. The person is then told whether he is safe to drive under all circum- stances, safe to drive with specified restric- tions, or not safe to drive at all. This test can be partially billed to Medicare, but usually results in a substantial self-paid charge. Call the Sixty Plus Helpline if you would like more information about local driving assessment programs. Even if someone with early de- mentia passes a driving assessment, contin- ued driving will have to be very closely moni- tored, as the dementia progresses.

19 UNDERSTANDING & – Identify the time when the person functions best. Use this time for ap- MANAGING BEHAVIORS pointments or social engagements. – Try to make all activities, including As dementia progresses, the affected person those done at home, short in duration. continues to become more dependent upon family caregivers. The ability to express one’s • Change – Adjusting to change in any form is needs is more and more impaired, causing overwhelming to the person with dementia. much frustration and confusion. This may re- It causes confusion and agitation due to the sult in behaviors that seem intentionally dif- fear of a new, unfamiliar situation. Minimize ficult or mean-spirited. But the person with change as much as possible. dementia has no control of them, and in fact – Do the same activities at the same time they are a normal part of the dementia pro- and place. The timing is not as im- cess. Not everyone with dementia has such portant as the sequence of activities. difficult behaviors, but they are extremely – Decline offers from others for special common nevertheless. events that will be too disruptive. – Be careful during holidays. Keep dec- All behavior has a purpose. It just may not be orations simple so as not to change easily identified. Sudden behavior changes are the look of the home. Long gather- often triggered by things that can be controlled. ings and crowds of people can pro- 20 duce frustration and anxiety. Simple Triggers for Difficult Behaviors festivities are better tolerated. • Fatigue – People with dementia tire easily – During an outing, keep it short. If the because it takes intense concentration to person becomes restless and wants make sense of their world. They are using to go home, try to comply. many coping skills to adapt to the illness – Traveling with a person who has de- and sort out everyday tasks. mentia can be very challenging. – Provide rest time in the morning and Think hard about whether it’s worth- afternoon, either a nap or just a qui- while to include the person. et period. This should be done in an – Arranging for respite care while care- easy chair or sofa, rather than the givers leave town may be a much bet- bed, so that they recognize it as a ter option. Airports, the confinement rest time and not the beginning of of airplanes, time changes, crowds, another day. and different food all contribute to an – Avoid foods and drinks with caffeine. escalation of confusion and stressful – Provide rest periods before and after situations for everyone. a social activity or trip. Don’t try to ac- – Special occasions like weddings complish too much in one day. Plan and graduations require extra plan- in advance a place and time where ning. If you decide to include your per- the person can rest during a pro- son with dementia, it’s usually best to longed gathering or special occasion. make sure that a designated caregiver is there at all times, perhaps someone who is hired for the event. Otherwise this is a cause for concern and family members may not enjoy them- should be evaluated by the doctor. selves and be free to celebrate. A consultation with a nutritionist may – During a hospital stay, expect in- also be helpful. creased confusion and agitation. Try to arrange for someone familiar • Pain – People with advancing dementia to stay with the person. Educate the typically have trouble identifying and com- hospital staff about behavior man- municating pain and discomfort. Look for agement strategies that help to re- body language that could signal signs of duce agitation in your loved one. pain, like facial grimace, change in posture – Have continuity in caregivers. Allow or gait, falling, knees drawn up, rubbing or plenty of time for the person to be- holding a body part, clenched fists, moan- come acquainted and build trust ing, pacing or fidgeting, decline in interest with any newcomer. in usual activities, combativeness and agi- tation, and problems with sleep. • Illness – The mental abilities of a person with dementia decrease with discomfort or Pain may be caused by an acute illness or acute illness. A sudden change in behavior a chronic condition that results in ongoing or increase in confusion that does not go discomfort. Caregivers need to closely ob- away with rest should be reported to the serve to try to figure out the cause of the 21 physician for evaluation. It could be the pain. Sometimes less obvious causes, like presenting symptom of an acute illness, ingrown toenails or toothache, can be the rather than the natural progression of the culprit. Severe pain is often treated with nar- dementia. A change in behavior may be cotic medications which are effective, but the only signal of a physical problem such often accompanied by troublesome side ef- as pain, urinary tract infection, flu, medica- fects. Constipation is common, as are slug- tion reaction or serious constipation. gishness, dizziness, and an increased risk – Make sure the person’s diet contains for falling. Consult closely with the doctor re- adequate fiber. The risk of consti- garding any pain medication. pation increases as the person be- comes less active. Hard-To-Manage Behaviors – Urinary tract infections are common Because people with dementia lose their causes of agitation. Does the urine ability to receive and interpret information, smell strong? Has the person been they will often display bizarre behavior which drinking adequate amounts of fluid? puzzles and frustrates their caregivers. Fre- Is there sudden incontinence? quently they will “perseverate,” meaning that – Have the physician or pharmacist re- they will get stuck on a subject and ask about view medication frequently, includ- it constantly. Or they might become agitat- ing all over-the-counter medications. ed, feeling anxious, restless, and easily pro- – Avoid alcohol. Many people with de- voked, all at the same time. mentia overreact to alcohol. – If the person unintentionally loses more than six pounds in six months, • Repeated Questions – Very often the ques- – Arrange the person’s daily sched- tions asked are not really about the prob- ules so that few major activities take lem. Try to identify what the person is re- place in the evening. Try to create ally worried about and offer reassurance. a calm, quiet and very predictable – Write the answer on an index card evening schedule. and have the person carry it around. – Eliminate caffeine and alcohol later When the person asks again, point to in the day. the card. – Allow the person to pace. If possible, – To avoid repetitive questions, don’t take an evening stroll which may announce anything more than 24 help to tire the person. hours in advance. – If necessary, consider medication. It’s essential for family caregivers to • Hiding and Hoarding – Hiding things often get their sleep at night, so the per- represents a concern about theft. When son with dementia must sleep, too. the person can’t find things, it might be as- sumed that they’ve been stolen. This can • Suspiciousness and Paranoia – Dementia be a very frustrating aspect of dementia. frequently results in a general feeling of in- – Remove valuables from easy access. security. The world becomes a frightening Pack away larger items. place for the affected person, and so it’s – Place seldom used jewelry in a safety hard to trust anyone. Family members are 22 deposit box, or have a jeweler replace often accused of dreadful things, poten- valuable stones with imitations. tially causing much shock and distress. – Get to know the hiding places rou- – No matter how hurtful the person’s tinely used – typically under a mat- behavior is, try not to argue or reason. tress, in the pages of a book, under – Don’t confront or try to teach a les- pillows, in food containers, in plastic son about the bad behavior. bags, and in the freezer. – Learn to respond calmly, not defen- – Lock closets, cupboards, and un- sively. Remember that it’s the dis- used rooms. ease talking, not your loved one. – Keep duplicates of important items – If the suspicion centers on a missing such as glasses, important keys, item, offer to help find it. and hearing aid batteries in a place – Try not to whisper in front of the per- that the person can’t get to. son. – Check wastebaskets before emptying. – Most people who are very suspicious are also very afraid, though they • Sundowning – Later in the day, as the sun won’t be able to verbalize their fear. goes down, many people with dementia be- Offer reassurance. Let them know come restless, more wakeful, and at times that you understand they feel badly, very agitated. Family caregivers frequently and that you’re there to help them remark about this behavior and how es- and keep them safe. pecially difficult it is. As everyone else is getting ready to go to bed, the person with dementia is more active than ever. • Wandering – This is a common and poten- In most cases, these behaviors can be ef- tially dangerous behavior. The demented fectively managed by reassuring and hu- person who is physically agile can leave moring the person with dementia. How- home quickly and get lost before anyone ever, if the delusions or hallucinations knows there’s a problem. become frightening and threatening, it’s – If the person is becoming agitated or best to consult with the physician about restless, try to distract to a more ab- possible medications to keep them under sorbing activity. control. Antipsychotic medication may be – Provide a safe area for wandering, prescribed. These drugs are very strong such as a fenced-in yard. and need to be monitored closely so that – Obtain a Safe Return bracelet from they don’t cause too much drowsiness, or the Alzheimer’s Association. This unsteadiness leading to falls. Some anti- device, which cannot be removed psychotic medications have more serious once the person is wearing it, will side effects, like diabetes, another import- alert police that the person has de- ant consideration. mentia and is away from home. – Don’t try to argue or convince the – Camouflage the home. Put posters on person that the delusion or halluci- doors to discourage the person from nation isn’t real. Accept what is be- going outside. Put a black mat in ing said. Correcting the person will front of every door – people with ad- only lead to greater agitation. 23 vancing dementia avoid any area that – If the delusion or hallucination is scary, looks like a black hole. Contact the reassure the person that you’re there Alzheimer’s Store, www.alzstore.com, to help. You’ll keep them safe. for other clever suggestions to keep – Reduce clutter and shadows. Have the the person free from wandering. person’s hearing and vision evaluated. – Use childproof doorknobs. – You may be able to identify the spe- – Place locks on doors at the very top cific cause of the delusion. For ex- or at the very bottom. People with ample, many demented people be- dementia will rarely look up or down come frightened by mirrors. They to unlock a door. don’t recognize themselves and pre- sume that a stranger is in the house. • Delusions and Hallucinations – Delusions Cover mirrors if you realize this is are fixed or persistent beliefs that in fact are happening. Similarly, TV shows can not true, but to the person with dementia, be threatening. Keep them turned they’re completely true. Hallucinations are off when the person is awake. anything experienced with the five sens- – Some delusions and hallucinations es that are not real. Most hallucinations are harmless or even pleasurable. If are visual, but they can also be auditory, the person enjoys them, join in and such as when someone is hearing voices, discuss what’s happening. or olfactory, imagining a strong smell that doesn’t really exist. Delusions and halluci- nations are both very common in people who have dementia.

• Catastrophic Reactions – Sometimes peo- – Try to distract and redirect the per- ple with dementia have an intense emo- son’s attention. tional reaction to a minor problem. This – Be alert for any groin rash. Some- can catch caregivers off guard – they may times what appears to be self-stimu- not be able to identify what triggers the be- lation is in fact a skin problem. havior. Anything can cause a catastroph- – Be sensible and practical with family ic reaction: illness, injury, constipation, a members or friends who may be new caregiver, or even a time change. The receiving unwanted attention. Help person may cry inconsolably, shout, swear them understand that dementia is or become combative. Catastrophic reac- causing the behavior, but also let tions do not usually respond well to med- them know that it’s OK if they choose ication. The person needs gentle reassur- not to be around the person. ance and calming attention from family – In public situations, discreetly hand members during these difficult moments. out cards to offended strangers, ex- plaining that the person has dementia. • Sexually Inappropriate Behavior – It’s quite common for people with dementia to • Possible Need for Hospitalization – Most become uninhibited. This is often the case of the time family caregivers are able to with things that they say, blurting out com- handle challenging behaviors with their ments that may be offensive to others. But own calm responses. Sometimes, too, the 24 demented people can also become sexually demented person will need medication, uninhibited and try to touch others around especially if agitation or paranoia becomes them. Lack of impulse control and the de- too intense. But extremely troublesome sire for soothing contact contribute to this behavior may be best treated in a hospi- behavior. This can create major problems tal environment, where the person can be within families and in social situations. closely observed and medicated until sta- bilized. This type of hospitalization, which If you realize that your loved one is dis- is quite common, usually lasts from one to playing overt sexual language or behav- two weeks. Contact Sixty Plus for further ior, try to remain calm and analytical. You information about hospital admissions for may be able to identify triggers and avoid those who have difficult dementia behaviors. future problems. HOW DEMENTIA IMPACTS the person seems much more lucid on some days, contributes to the feeling that things ar- THE FAMILY en’t so bad. But prolonged denial interferes with appropriate planning. It can prevent ac- The diagnosis of dementia can be confusing curate understanding of the symptoms asso- to family members, many of whom may not ciated with the disease. understand just what this diagnosis means. Some families will deny what’s happening and Anger, Resentment, and Guilt insist that the person is not that bad; others Feelings of anger and resentment can have might feel overwhelmed with sadness, grief, many different causes: the loss of dreams and fear. But as the affected person’s de- for the future, feeling trapped in a long-term mentia progresses, usually one or two family caregiving role, having to perform unpleasant members emerge as the primary caregivers. daily tasks, dealing with frightening dementia It may be the person’s spouse, or a sibling behaviors. Many caregivers feel overwhelmed or a child who has the most available time. and find that their resentment significantly -af Someone has to take charge and make sure fects their sleep and general health. Moreover, that the person is getting whatever is needed. not all caregivers have had a good, loving his- In the process, life for the family is disrupted tory with the person who has dementia; this until a new equilibrium can be established. can make caregiving extra hard. If it’s your responsibility to take care of a parent who 25 Dementia changes relationships within a abused you, or a spouse who mistreated you, family. It affects how family caregivers use deep-seated anger is a very normal response. their time. It can also significantly impact their finances. Caregivers often feel guilty. If they lose their temper and snap at the demented person, To cope with this disease, family members they’ll often berate themselves relentlessly. must recognize and accept their feelings If the person becomes ill, or wanders away and develop new ways of relating to the per- from the home while the caregiver is busy, son with dementia. Sometimes dementia will the guilt can be enormous. They can feel splinter families, causing resentment because that they’ve let their loved one down and that not enough of the caregiving responsibility is they’re failing at their job. being shared. But most of the time families rise to the occasion. They may even find that Social Isolation this disease can bring them closer together. There can be so much for caregivers to do every day that they lose touch with their old Family caregivers often careen between lives. There’s no longer time to spend with strong emotional responses. It’s important to friends. There are no more vacations. Mean- acknowledge all that you might be feeling. while, many friends slip away. They don’t un- derstand dementia and feel awkward visiting. Denial And if the person with dementia has difficult It’s not unusual for families to refuse to be- behaviors in public, even trips to the store or lieve a doctor’s diagnosis of dementia. The local restaurants become much less frequent. often fluctuating nature of dementia, where Embarrassment and Shame in the home, or using a long term care facil- Although dementia is a medical disease, like ity. Care may extend over a period of many arthritis or cancer, many families still as- years. Public assistance programs tend to be sociate it with mental illness. The dement- available only to the most indigent families. ed person doesn’t look sick; he just acts in Some patients may be eligible for veterans’ a strange and unpredictable way that can benefits which can help pay for care, but cause much embarrassment for the family. most middle class families will need to incur To complicate matters, not everyone in pub- care costs themselves. lic recognizes dementia for what it is. They may be offended by the person’s behavior. Depression and Anxiety However, as the incidence of dementia in- Lack of control over the progression of de- creases, more and more families are learn- mentia can make caregivers feel helpless ing about this disease first hand. It can help and hopeless. Depression is a natural re- to diminish the feelings of embarrassment if action to any catastrophic disease, and it’s you realize that just about everyone knows extremely common for family caregivers. somebody with dementia. Anxiety is closely connected to depression, but the symptoms are different. Whereas de- Grief pression results in feelings of great sadness, When someone dies, the custom is for fam- sluggishness and exhaustion, anxiety tends to make you feel tense, restless and irritable. 26 ilies to publicly grieve at a funeral or memo- rial service in which the person is eulogized Anxiety can cause many physical symptoms, and honored. The family gets much emotion- such as chest pain, heart palpitations and al support and sustenance from their close other body aches. Both depression and anx- friends and community. But when someone iety affect sleep patterns and appetite. Many develops dementia, there is no formal griev- people suffer from anxiety and depression ing process. Families have to endure the loss at the same time. The good news is that there of the person they knew and loved all on are excellent medications available to treat their own. Often called “the long good-bye,” these conditions. They’re non-addictive and the process of watching your family member very effective, making caregivers feel much decline with dementia is draining, and can better about their ability to cope. last for years. It can cause much suffering for caregivers, who can feel very isolated with Caregiver Role Changes their sadness. Finding yourself in a completely different family role can be so strange and disruptive Financial Fears that it leaves you feeling bewildered, lost and Dementia can be an expensive disease. Care- sometimes, incompetent. The wife who nev- givers may need to leave paid employment to er managed the checkbook suddenly has to stay home with the patient. Patients them- take on all the family finances when her hus- selves may still be in the workforce when band becomes demented. The husband who they’re diagnosed, another loss of income. has never had to cook has to plan and prepare In addition, paying for care can cost a lot, all meals, for the first time in a long marriage. whether it’s adult day programs, hiring help The son who is caring for his mother has to assist her in the bathroom, and help her get dressed. These role changes are especially perplexing. It’s not what anyone is used to, nor what you anticipated would happen. Give yourself time to adjust and let yourself off the hook if things aren’t done perfectly. Not only is the demented person experiencing a pro- found life change, but you are as well.

Planning and Decision Making Making decisions is a continuous process, beginning with the realization that your loved one is becoming increasingly forgetful, and not ending until after the death of the per- son with dementia. There is so much to do: getting the correct diagnosis and treatment; making sure the person is kept safe, with an optimal quality of life; attending to all of the daily chores and caregiving activities that never seem to end; and making decisions 27 about future plans, for yourself as well as your loved one.

Family caregivers need to attend to legal matters early in the course of the disease. Advance directives for both health care and finances need to be completed. Legal guard- ianship may be necessary. Gifts of assets and trusts may need to take place. An elder law attorney can be an excellent resource at this juncture. It can also be helpful to work with a geriatric social worker who can lead you to the most appropriate community re- sources. Call the Sixty Plus Helpline for more information. CARING FOR Most caregivers require steady, predictable breaks, at least once per week, lasting sever- THE CAREGIVER al hours at a time.

Caring for a person with dementia is a stress- Try to maintain your friendships. Try to get ful and demanding job which usually hap- out of town. Try to read your favorite books pens quickly, with little or no preparation for and magazines. Get a massage. Go to a mu- family members. To manage most effectively, seum. Get your nails done. Go fishing. Exer- the realities of the disease must be accepted. cise. Take a long, warm bath while you listen But it’s also necessary to acknowledge the to your favorite music. Meditate. risk that caregivers themselves will face. You must also maintain your own health care If the primary caregiver is not functioning well with regular visits to your doctor. Report any enough, the person with dementia won’t be symptoms of anxiety or depression, sleepless- functioning well, either. Everything hinges on ness, or appetite changes. You might benefit the health and stability of the primary caregiv- from seeing a psychotherapist or counselor er. There are many reports in medical literature who specializes in caregiver stress. about the acute emotional and physical strain that caregivers suffer. In many cases, they die It helps tremendously to attend support first, before the demented person passes away. groups. Sixty Plus offers local groups specif- 28 ically for family caregivers of those with de- Managing someone with dementia is beyond mentia. These groups are free and available the resources of a single, unassisted family in the daytime or evening. They’re comprised member. It’s crucial to get help. of spouses, children, siblings, and close friends who want the camaraderie of others Where and how to get that help will differ who understand what it’s like and who don’t from family to family. Large families with need lots of explanations. Support group par- more available relatives may share in giving ticipants will find a safe place for their tears the primary caregiver regular breaks. Some and frustration and even find themselves families will pay for hired help in the home laughing about the strange world of dementia. or make use of adult day programs for the There’s also a lot of practical information and affected person. Others will take their loved advice that’s disseminated at each meeting. ones for respite care stays in local assisted living facilities. Still others will decide that Many excellent websites are available for caring for the person at home is no longer caregivers. A few to try are www.caregiver.org, viable and seek a good long term care place- www.alz.org, www.thealzheimerspouse.com ment in a convenient location. and www.wellspouse.org.

Remember that there is no perfect caregiver, Whatever you decide to do, and wherever anywhere. What works for one family won’t you go for help, remember that you’re not work for another. You have to find your own alone. Millions of families are dealing with way to leave the caregiving to others so that this disease, and there are many services for you can be replenished. Whatever you de- you and your loved one, in every community. cide, make sure it happens often enough. LEGAL & FINANCIAL ISSUES who are not family members. This docu- ment is available in the Sixty Plus office at If the person with dementia has not already Piedmont Atlanta Hospital and also on our signed advance directives – documents that website. allow for trusted family members or friends to be surrogate decision makers – this should • Durable Power of Attorney for Finances – be done as quickly as possible. However, the The affected person needs to have a des- person with dementia still needs to have some ignated surrogate who can take over finan- lucidity in order for the documents to be val- cial matters, from paying monthly bills to id. For someone with severe dementia, it’s too managing investments. Just like the ad- late. It’s best to get this done very early in the vance directive for health care, the DPOA disease process because it’s hard to predict for finances decrees that the agent named how quickly the dementia will progress. cannot force decisions upon the person as long as he remains mentally capable. How- Similarly, there needs to be close attention ever, when he no longer has mental capac- paid to the financial status of the person with ity, the DPOA for finances is activated. This dementia. A clear understanding of the costs document is available from the bank used incurred for dementia care will help families by the person with dementia; sometimes, plan for the future. however, family attorneys will be responsi- ble for making sure this is signed. 29 Legal Documents Most of the following documents are neces- • Guardianship – If there are no advance di- sary when caring for someone with demen- rectives signed before someone becomes tia. This information is specific to Georgia, significantly demented, the only way to but every state has similar documents. Keep gain decision making authority for health the originals and make as many copies as care and finances is through guardianship. needed for other family members and health This is a legal arrangement which appoints care providers. both a guardian of person and conservator of finances, and requires court supervi- • Georgia Advance Directive for Health Care sion. There is a substantial filing fee for – This document, revised in 2007, com- guardianship. The person seeking guard- bines a living will and the Power of Attor- ianship must submit a petition to the pro- ney for Health Care. It allows the person to bate court in the demented person’s coun- appoint a health care agent, a trusted indi- ty of residence. A court appointed mental vidual who will make surrogate health care health professional will then evaluate the decisions assuming that the person is no person to determine competency. Guard- longer capable of making decisions. It also ianship can be very time consuming; asks the person to record treatment prefer- guardians must justify to the court how the ences, as well as who should be appointed demented person’s money is being spent. guardian should one ever be needed. This It is, however, a necessary step when no document does not need to be notarized. powers-of-attorney exist, and especially It requires the signature of two witnesses when there is family disagreement about care plans. • Do Not Resuscitate/Allow Natural Death For many family caregivers, having DNR/ Orders (DNR/AND) – This is a directive AND orders makes a lot of sense. However, ordered and signed by a physician for those it’s essential to carefully think through how patients who do not want to have cardiopul- you, or others in the home who are providing monary resuscitation (CPR) administered if care, may respond in the moment when the there is a heart attack. Hospitals and nurs- patient collapses. It can be very hard not to ing homes are accustomed to these orders call 911 and want immediate resuscitation. and will honor them, but it is always best Please discuss this with everyone involved in to specifically discuss this issue with staff the patient’s care. Keep in mind that if the members well in advance of any medical patient is in the end-of-life phase of demen- emergency, usually when the patient is first tia and already on hospice care, the hospice admitted. Assisted living facilities and per- nurse should be called, not 911. sonal care homes may have a different ap- proach to DNR/AND orders. Please make Georgia now has another medical order that sure that you discuss this issue in advance enables very sick patients to designate the of moving your family member into one of treatments they want and to ensure that these these facilities. Many families are clear that choices are honored by health care profes- they do not want CPR and would prefer for sionals. The POLST – Physician Orders for their person to die naturally. Whenever a Life-Sustaining Treatment – has recently been demented person moves into this facility, introduced in Georgia, though it is well estab- 30 this issue should always be discussed. lished in other states. It provides choices for Many families are very clear that they want code status, such as whether to do CPR, as CPR to be withheld. well as what types of medical interventions, antibiotic use, and artificially administered Many people being cared for at home also nutrition and hydration the patient may want. want DNR/AND orders. They can obtain a The order should be printed on pink paper, DNR/AND order signed by the primary care and like the DNR/AND, be displayed promi- physician and display it prominently in the nently in the patient’s home. Please note that home. You can get a copy of the order by because the POLST is new to Georgia, many searching on the internet “Georgia DNR or- medical professionals – even paramedic EMT der,” print it, and bring it to the doctor. Every- services – are not familiar with it. Therefore, one caring for the dementia patient needs to if you are caring for someone who does not know about this order and feel comfortable want to be resuscitated, it is best to not rely with complying with it. If the patient collaps- only on the POLST form to indicate the pa- es, 911 should be called but it should also tient’s wishes but to also have a DNR/AND be stated very clearly during the call that order. For more information about the POLST, the patient has a signed DNR/AND order. go to www.gapolst.org. When the paramedics arrive, they need to be shown the order immediately or else they will Paying for Care attempt resuscitation. Once shown the order, • Home Care – If you decide to hire extra they will examine the patient to determine if help in the home to care for the patient, death has occurred. there’s a good chance this will be an out- of-pocket expense. Unless the demented munities, personal care homes, or nursing person has long term care insurance with homes. Sometimes a person with demen- a home care provision, and unless he or tia who is not too advanced in the disease she has a low enough income to qualify for will be able to live successfully in “regu- certain Medicaid programs, all home care lar” assisted living, as long as wandering is paid for privately. Medicare and supple- is not a problem. But for more demented mental health insurance plans don’t cov- patients who want to live in an assisted liv- er the cost of ongoing home help. If you ing community, it is necessary to be in the hire workers from a private duty agency, locked dementia unit, which most commu- you’ll want to request Certified Nursing As- nities have. It is more expensive to live in sistants who are experienced in dementia dementia units. Please note that assisted care. The current hourly cost for CNAs in living and personal care homes are only Georgia ranges from $18 to $25 per hour, paid for privately in Georgia, with just one and usually there is a four hour minimum small exception for those who have a low shift. It’s possible to find independent work- income.*Nursing homes generally take pa- ers who are not associated with an agency tients who are more advanced in demen- who will charge less per hour, but then it tia, and who are likely to have other health is your responsibility to handle their taxes problems as well. Nursing homes are paid and withholdings. In addition, hiring inde- for privately, or for those who qualify, Med- pendent workers requires that you com- icaid will pay. Medicare never pays for long 31 plete thorough background checks and term care. talk to references to ensure that the person is trustworthy. Before making a permanent decision about any residential facility, visit many places and • Adult Day Programs – There are many talk to other families who use them. Recent adult day programs which offer both half state inspection reports on nursing homes day and full day care specifically for peo- are available from www.medicare.gov. You ple with dementia. This is a good option for can also consult with the clinical social work- someone living at home with family mem- ers at Sixty Plus, who are familiar with vari- bers who need to go to work every day or ous facilities, their costs, and programming. who need consistent breaks from caregiv- ing. Adult day care provides socialization *The Community Care Services Program and appropriate structured activities for pa- provides assistance to older adults in declin- tients who tend to enjoy them very much. ing health who want to remain in their homes Some programs offer transportation and a rather than move into long term care. There meal. Costs begin at about $50 for a half is an income cap and CCSP participants day program and upwards for longer days. must qualify for Medicaid. CCSP can also Some programs offer sliding fees based on help some participants with the costs of per- the person’s income, and some long term sonal care homes, which are similar to small care insurance policies will cover day care. assisted living communities.

• Residential (long term) Care – Residential care can be found at assisted living com- HOSPITALIZATION & Hospitals are very busy places where things happen quickly. Not all doctors, TRANSITION BACK HOME nurses, or other health care providers may know that your family members has de- An inpatient stay in an acute care hospital mentia. Their focus instead will be on the can be a turning point in the lives of frail older acute medical problem that caused the adults. Their physical and mental health may hospitalization. You may need to inform seem todecline after hospitalization. This is them of the patient’s dementia. This piece particularly true for patients with dementia. of information could help to determine the course of treatment. Most patients are not followed by their pri- mary care physicians when hospitalized. It • It’s very helpful to the hospital staff to have is usually a “hospitalist” doctor who takes the patient’s family designate one primary over, and then at discharge the patient is contact person; this may well be the pri- transferred back to the primary care doctor. mary caregiver. This will help the commu- Although it may seem distressing to realize nication flow and let everyone know, hos- that the primary care doctor is not the one in pital staff and other family members alike, charge, this new arrangement is actually very that there is one “information keeper” who beneficial considering the complex nature of knows everything that’s going on. You may acute medical care. Hospitalist physicians be asked to have a password in order for 32 coordinate and manage all aspects of the hospital staff to share information. hospital stay; they don’t have private outside practices, and so all of their time and atten- • Be prepared to stay in the hospital, close tion is focused on hospitalized patients. They to the patient, night and day. If you or oth- are specialists in this regard. They know all er family members cannot be there, you’ll other departments in the hospital well and probably need to hire someone to make thus they can network promptly and effi- sure that your loved one is not trying to get ciently on their patients’ behalf. out of bed or pulling out IVs.

However, anyone with dementia is still go- • Understand that a major focus of the hos- ing to have a challenging time when hos- pitalization will be on developing the best pitalized, no matter who is in charge of the discharge arrangement for the patient. medical care. Feeling sick and being in an Hospital staff will begin conversations unfamiliar environment will exacerbate con- about discharge plans very shortly after fusion. Family caregivers are often shocked the patient is admitted. by the swift decline in mental functioning that occurs during a hospital stay. Therefore, • In a notebook, record what transpires it becomes more important than ever to be during the hospitalization: who is treating organized and proactive. your loved one, his/her response to treat- ments, sleep cycles, appetite, etc. This Points to Remember information forms a crucial part of the pa- • Try to think of yourself as an advocate for a tient’s ongoing health history. holistic approach to your patient’s needs. • Be meticulous about discharge medica- tions. Have a list of every prescription your patient should be taking. Make sure that the discharge nurse reviews it with you so that dosing instructions are clear. Discuss any over-the-counter medications you give to your patient, to make sure everything “mixes” well.

• Have a clear understanding of services that are supposed to be offered in the home af- ter discharge. Very often a visiting nurse or physical therapist will be ordered to work with the patient for several weeks. You’ll need to know which agency will be pro- viding these services, their phone number, and when they’re supposed to start.

• Similarly, know what medical equipment you’ll need to have at home. Medicare cov- 33 ers the cost of many types of equipment. Find out what equipment is being recom- mended and the name of the medical sup- ply company involved. Find out when the equipment will be delivered. And remem- ber to bring home any equipment which has been given to you for future use.

• Promptly schedule follow-up appointments with your patient’s primary care physician and specialist physicians.

• Watch out for “red flag” symptoms when the patient returns home. For example, are there signs of a worsening medical condition, like greater lethargy, declining appetite, more confusion or worsening balance? If so, contact the doctor ASAP. END-OF-LIFE CARE living facility, or nursing home where they permanently reside. The hospice team con- For many people with dementia, physical sists of a nurse, social worker, dietitian, phys- health will decline gradually but steadily, re- ical therapist, clergy, and very often volun- sulting in further cognitive problems, weight teer staff as well. They visit frequently and loss, immobility and eventually an inability to remain available to the dying person and to swallow. When someone reaches this point, the family, as often as needed. the family must determine whether to seek tube feeding, to keep the person alive. Often, Some hospice programs offer in-patient care, families will choose to decline extraordinary where those who are “actively” dying can measures to prolong the person’s life, and spend their final weeks or days. Insurance instead allow nature to take its course. coverage for in-patient hospice care is often limited, so it’s important to check with the Hospice care is available to those with life- insurance company about the exact extent limiting neurological diseases, including de- of coverage. Medicare, for example, will cov- mentia. However, the person must be giv- er all home-based hospice services, but not en a prognosis of six months or less to live. necessarily all of an in-patient hospice stay. There are other specific medical criteria which need to be present in order to qualify Hospice care in the home does not pay for ongoing custodial and personal care; family 34 for hospice care. members or hired workers perform these A physician must order a hospice evaluation tasks. Hospice team member visits are brief when it appears that the person is approach- and episodic. Their intention is to monitor ing the end of life. Usually the family will the person’s rate of decline and to ensure decide which hospice program they wish to that maximum comfort and quality of life are use. After the hospice receives the physician being provided. They work very closely with order, a nurse will evaluate the person to family caregivers, providing education, un- make sure that he or she meets the eligibility derstanding, and support. They are available criteria for hospice admission. 24 hours per day.

When families seek hospice care, it is un- Very often those who are receiving hospice derstood that no further lifesaving interven- care will live longer than expected, exceed- tions will be made. The demented person no ing the six month mark of life expectancy. longer goes to doctors’ appointments, and This is not a problem; patients in this situa- if there is an emergency, the person is not tion can be re-certified for hospice care by rushed to a hospital emergency room. In- the doctor, as long as hospice criteria con- stead, the hospice nurse is called. The em- tinue to be met. phasis at all times is on the patient’s comfort and quality of life. You may hear the term palliative care in reference to frail patients who are clearly in Most people receive hospice care wherever physical decline. These patients have little they live – either in the family home, or assisted or no hope for recovery. Sometimes they are said to have a syndrome called “failure to thrive.” More and more hospitals and out-pa- tient programs are developing palliative care approaches which, like hospice care, focus on the person’s comfort. People with advanced dementia are eligible for palliative care before they become eligible for the more structured approach of hospice care.

Remember that those with dementia often suc- cumb to another disease later in life, such as cancer, lung disease or heart disease. But if death is not caused by another terminal illness, end-stage dementia will cause the person to die. The staff at Sixty Plus Services can recom- mend resources for learning more, as well as grief support groups that family members may wish to attend.

Please call us if you are uncertain whether your 35 loved one is ready for end-of-life care. We can help you figure out if the time is right. SPIRITUAL CARE Alternatively, the family may want to set aside regular quiet time for prayer and People with dementia continue to need meditation, perhaps at a point during the spiritual care, especially if spirituality has day when the person is usually more sub- been an important part of their lives. As de- dued and peaceful. Clergy can visit, and mentia progresses, spiritual experiences for Eucharistic ministers can be called upon to both the patient and the family caregivers serve the person at home. can be especially meaningful. Many faith traditions are now actively reach- Even those who are severely demented will ing out to members of their congregations remember prayers, songs, and rituals from who are demented, and to family caregiv- childhood. It can be comforting and reassur- ers as well. Elder care ministries are being ing when family caregivers recite passages recognized as an essential part of organized from the Bible, Torah or Koran, or sing holi- religion, to respond to the overwhelming day carols. If the patient is not part of a for- need for spiritual support as so many fam- mal religion, spiritual time can be preserved ilies contend with dementia. If you are part through music, nature, and other experienc- of a religious community where this has not es that are meaningful to the individual. yet been developed, you may want to ask your spiritual leaders to address this specific need. And please try to find regular time for 36 Although it may no longer be possible for the person with dementia to attend worship your own spirituality. Faith can help you to services, devotional time can still be ob- cope with the daily challenges of caregiving. served by tuning into TV or radio programs. NOTES: ______37 ______NOTES: ______38 ______SIXTY PLUS SERVICES

Sixty Plus Services would like to thank the Georgia Chapter of the Alzheimer’s Association, Jewish Family Services, and the Visiting Nurse Health System for their contributions to the first editions of this guide, in 1985 and 1996. Since then, the guide has been updated every three years by the Sixty Plus staff, to reflect current knowledge and best practice information. We are also grateful to the patients and families with whom we work. It is because of their support and interest that we can continue to offer our services to the Piedmont Healthcare community. For information, call the Sixty Plus Services AGING HELPLINE at 404.605.3867.

The programs and support provided to older adults and their families through Sixty Plus Ser- vices are made possible by the generosity of our donors. The Sixty Plus Services program oper- ates with no private insurance support. All donations are used exclusively for our work with older 39 adults and their caregivers. Piedmont Healthcare is a 501(c)(3), not-for-profit institution. Private gifts to Piedmont Healthcare Sixty Plus Services are tax deductible. For more information or to make a gift, visit donate.piedmont.org or call 404.605.2130.

Piedmont Atlanta Hospital: 404.605.3867 Piedmont Fayette Hospital: 770.719.7214 Piedmont Henry Hospital: 678.604.5999 Piedmont Mountainside Hospital: 706.299.5059 Piedmont Newnan Hospital: 770.400.2010 Email: [email protected] piedmont.org/sixtyplus 40

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