YOUR GUIDE TO LIVING WITH ALZHEIMER S DISEASE

Transcription

1 YOUR GUIDE TO LIVING WITH ALZHEIMER S DISEASE

2 Have you or has someone you love recently been diagnosed with Alzheimer s disease?

3 Or have you been living with the disease for some time? Whatever your answer may be, this booklet will help you better understand Alzheimer s disease. Whether you re the one who has been diagnosed with the disease or whether you re supporting someone who has been, you ll find a wealth of information here, including what to expect at the various stages of the disease and helpful advice on how to improve your day-to-day life. By deciding to read this booklet, you ve taken a step towards learning about the disease and how to better live with it. Your doctor is there to help you take the next critical steps, so be sure to speak to him or her regularly. Together, you ll develop the right plan for your future.

4 What is Alzheimer s disease? Alzheimer s disease is a type of progressive dementia an illness of the brain that affects a person s ability to carry out daily activities. Memory, emotions, mood, behaviour and language are all affected. Because the disease is progressive, the symptoms worsen over time. While there are different forms of dementia, Alzheimer s disease is the most common one among older people. ABOUT AD Currently, there is no known cure for the disease. However, there are treatments that can help alleviate some of its symptoms, and your doctor can tell you more about them. The earlier the diagnosis, the earlier treatment can begin.

5 What are the first signs and symptoms? Alzheimer s disease starts slowly. In fact, when the disease begins affecting the brain, there are no outward signs or symptoms. After a while, small memory lapses appear and, over time, they grow more serious. People may forget things they used to know, like: The names of familiar people or places The words to express what they want to say The location of everyday objects It s normal for people to forget some things as they get older. Mild forgetfulness does not necessarily mean that it s Alzheimer s disease. People with the illness usually have a more noticeable and rapid decline in memory and other cognitive skills. If you become concerned about such changes in yourself or someone you care about, it s important to consult your physician. SIGNS & SYMPTOMS: OVERVIEW

6 Are people with Alzheimer s disease aware of their signs and symptoms? A person with Alzheimer s disease may begin to lose the ability to accurately assess their own abilities. Often, they lose insight and do not realize that they can no longer do the things they used to. That makes it particularly important to take the time to try to understand the meaning behind the behaviour that the person with Alzheimer s disease may be exhibiting, and then attempt to be more empathetic in interactions with them. The types of things that they might do include: Denying that they have the disease (especially in the early stages) Blaming or accusing others of misinterpreting their actions Being completely aware and even apologetic of their condition ( I m sorry, but I have Alzheimer's disease ) Feeling frustrated, agitated or angry Not recognizing the changes in their own personality By the middle stage, most people with Alzheimer s disease are no longer aware that they don t remember things or aren t communicating properly. But, if they are in a safe and supportive environment with regular contact with other people, most seem relatively unaffected by the disease. Watching someone decline is difficult for friends and family, though, and depression can be quite common. Fortunately, there are a host of support groups and tools out there designed to help families and friends deal with what they are experiencing.

7 What are the symptoms of Alzheimer's disease as it progresses? As the disease takes its course, affected people will become increasingly forgetful, and other signs will begin to show, including: General confusion and disorientation of date, time, or place Apathy, irritability, depression, anxiety Problems with language, math, abstract thinking, and judgment Personality changes and disturbing, out-of-theordinary behaviours Wandering, hiding objects, problems with eating and sleeping Later in the disease, paranoia and false beliefs may occur Towards the end, an inability to control bodily functions occurs These are the major symptoms, and not all people will experience all of them. It s important, however, to know what to watch for so that you can get help as it s needed.

8 Why is early diagnosis important? Once you recognize the signs and symptoms of Alzheimer's disease, the sooner you get a diagnosis, the better. This is true for a number of reasons: You may find that the symptoms are from another disease or condition that is curable. If, for example, the dementia is caused by a brain tumour or a vitamin deficiency, you or your loved one can get the right treatment, sooner If the diagnosis is Alzheimer s disease, you can start to speak to your loved ones about long-range planning and decision-making The medications and lifestyle changes that slow down Alzheimer s disease work best the sooner you begin them You can get an early start in treating the manageable symptoms that accompany the disease You can arrange caregiving without undue pressure

9 What are the stages of Alzheimer s disease? If you or a loved one have received a diagnosis of Alzheimer s disease, you may be wondering what to expect as the illness takes its course. From the time of diagnosis, people can live anywhere from three to twenty years with an average of eight years. It s helpful when planning for care to consider the illness s stages. Because Alzheimer s disease affects each person differently, people progress through the stages at different rates. And, although it s true that people with the illness will lose many of the abilities they once had, the best thing for caregivers and loved ones is to focus on the abilities that remain. STAGES

10 Main stages of Alzheimer s disease The disease has the following three stages: What personality and cognition changes occur? Stage: Mild (early-stage) Moderate (mid-stage) What happens: The person can usually function independently and may participate in their health decisions and planning for their future care despite the fact that memory loss and other cognitive deficits become noticeable. Mental abilities decline, personality changes, and physical problems develop, so the person becomes more dependent on caregivers. For instance, the person can still bathe, toilet and dress, although he or she might need help to do so. It is important for caregivers to give the person with the disease the chance to do as much as their remaining abilities allow them on their own. This can be done by simplifying the task at hand by dividing it into easier, smaller steps, and by maintaining the routines the person is used to. In mild Alzheimer s disease, the main thing that occurs is a decline in cognition. That means that the ability to think, reason, recognize and interpret is affected. People living with the disease, as well as their family, friends, co-workers, and medical practitioners, start to notice they are struggling with communicating and logical thinking. Changes in personality, as well as idiosyncratic behaviours, begin to appear. As a result, people with the disease seem less like themselves and so the challenge, at this point, is to try to connect with them in new ways that engage and stimulate them. A general apathy and lack of interest are characteristic of all three stages of the disease, but they begin here. Severe (late-stage) Personality changes, and the loss of control over bodily functions requires total dependence on others for even the most basic activities of daily living.

11 Mild (early-stage) Alzheimer s disease When Alzheimer s disease is diagnosed early, people s loss of abilities is often mild. With a little help, they can continue living as independently as they did before. Medications that help with the symptoms of the disease work best when begun at this early stage. Things to watch for at this stage include: Cognitive and memory problems that may appear Recognizes family and friends Can make structured sentences and express himself or herself fluently, but confuses and forgets names and words; makes up words, or stops talking to avoid mistakes Repeats himself or herself; keeps on asking the same questions May have some problems following/understanding a conversation Forgets recent events Less able to plan, organize, or think logically Increased difficulty with routine tasks such as planning dinner, grocery shopping, paying bills, and/or in his or her hobbies Increasingly unable to make decisions; defers to others choices Can execute basic daily activities, such as walking around and dressing, properly Poor judgment; decline in problem-solving skills Has problems with money and math Disoriented about time and place; becomes lost in non-familiar places Has trouble concentrating and learning new things; avoidance of change Withdraws from social and mental challenges Misplaces things: puts them in strange places Communication problems and mild forgetfulness begin May converse normally, but has problems finding the right words to express themselves Able to respond to what people are saying to them, even if they have trouble keeping up with a conversation Increasing difficulty understanding books, newspapers and other reading material Personality changes occur Apathetic, withdrawn, avoids people Anxious, suspicious, confused, fearful Exhibits repetitive behaviour May start crying or get angry for no apparent reason SIGNS & SYMPTOMS: MILD (EARLY-STAGE) AD

12 Moderate (mid-stage) Alzheimer s disease By the time the disease is diagnosed, it s often already in the moderate or mid-stage. That means that there s a decline in functioning, severe memory and cognitive problems, and that personality has drastically changed or even transformed. There s a marked change in people s appearance and hygiene, and, as they become less able to take care of themselves, they need considerable caregiver support. This moderate stage of the disease is the longest, and medication has proven useful to treat the symptoms of the illness throughout this stage. The range of problems that may occur include the following: Significant cognitive decline and memory problems Can still distinguish familiar from unfamiliar faces, but confuses names and faces of family and friends Still know their own name, but not their address or phone number Forgets their own history and recent events Embarrassed by inability to remember and makes things up to compensate Has trouble comprehending things; their speaking is more disorganized; mixes up words more than before Has decreased understanding of arithmetic and money Is disoriented about the season, day of the week, time of day Impaired communication skills Has problems speaking in complete sentences, understanding, reading, and writing. Some sentence structure remains Repeats words, questions, and gestures Personality changes become more significant May become more apathetic, withdrawn, anxious, agitated May become aggressive or threatening if they feel aggressed. In some cases, these behaviours can be caused by specific triggers or needs. By identifying their cause, changing the person s environment and the way to respond to these behaviours (e.g., staying calm and reassuring, distracting him or her, letting him or her calm down), they can be avoided or reduced Displays suspicion and paranoia: may accuse spouse of having an affair, or family members of stealing Has hallucinations and delusions: may hear, see, smell, or taste things that aren t there May experience an exaggeration of their normal personality traits SIGNS & SYMPTOMS: MODERATE (MID-STAGE) AD

13 Idiosyncratic behaviours evolve Exhibits inappropriate sexual behaviour: may mistake another person for their spouse, may disrobe or masturbate in public. Again, these behaviours can be avoided or reduced in some cases by identifying their cause and triggers, changing the person s environment and the way to respond to them (e.g., avoiding reprimanding him or her, providing him or her some privacy, staying calm, etc.) Paces, is restless, repeats movements; wrings hands, shreds tissues, handles certain objects over and over Wanders, sometimes away from caregivers and the familiar; chats to self while wandering Doesn t follow the normal sleep-wake cycle: sundowns (naps during the day, is active from late afternoon through the night) Increasing dependence and need for help with activities of daily living May eat without help, but needs reminding to eat and drink Needs help dressing for the weather or occasion; may need help putting clothing onto the correct body part Needs help with grooming: bathing, brushing teeth, combing hair Needs help using the toilet May no longer be safe when left alone: may fall, burn, poison, or neglect self; needs full-time supervision for safety Voluntary control of the body begins to decline Incontinence increases Can t get comfortable in a chair or on the toilet Experiences muscle twitches

14 Severe (late-stage) Alzheimer's disease In severe or late-stage Alzheimer's disease, personality has completely changed or transformed. Cognitive symptoms get worse, and physical symptoms become more serious. This is due to the loss of brain cells in all parts of the brain. The behaviours of the earlier stages disappear, and the person may seem more subdued. Drugs used to treat the symptoms in this late stage may be useful and, if recommended by a physician, should be continued throughout this severe stage until clinical benefit is no longer demonstrated. Cognitive and memory problems further decline Doesn t recognize familiar people, including spouse and family members Verbal skills are nearly gone Can no longer smile Doesn t speak or speaks in illogical words or phrases May call or cry out repetitively, or groan or mumble loudly Can t write or understand reading material Voluntary control of the body increasingly disappears Can t control movements; muscles are rigid Complete urinary and bowel incontinence Cannot walk, stand, sit up, or hold up their head without help; falls frequently if not assisted or supported; bedridden Can t swallow easily; may choke on food Can t move voluntarily Complete dependence on others Needs complete help with all activities of daily living Requires full-time care Health declines considerably Loses weight Reflexes are abnormal SIGNS & SYMPTOMS: SEVERE (LATE-STAGE) AD

15 The body shuts down May refuse to eat or drink May stop urinating Sensory organs shut down Exhausted, sleeps more Personality changes Apathetic, withdrawn (continues from mild stage) Dulling of the personality Idiosyncratic behaviours May pat or touch things repeatedly End-of-life care and pain management At the final stages of the disease, persons also suffer from a number of other diseases and conditions that have nothing to do with Alzheimer s disease, but that will often lead to death. For instance, pneumonia is an important cause of death among people with the disease. The main objective of end-of-life care is to alleviate pain or any distressing symptom the person is experiencing. Hence, it is important at this point, more than at any other time over the course of the disease, to provide comfort and preserve the person s dignity. All decisions regarding end-of-life care should respect the person s wishes as much as possible. If there is no advanced directive, or if they have not or could not be expressed, you can take into consideration his or her beliefs and values to make a decision that would be as close as possible to the one he or she would have made. Doctors and healthcare teams are there to help decide what is best for the person, and it is important to talk to them at this stage. Keep in mind that decisions regarding end-of-life care should aim at preserving the person s dignity, privacy, and safety.

16 Just for caregivers Caring for a person with Alzheimer s disease can be a difficult task that can become overwhelming at times. Each day brings new challenges as you learn how best to support your family member s changing abilities and new behaviours. As the end of life approaches, he or she may require constant care. At that point, you ll have to decide whether to hire a full-time healthcare professional to help at home, or whether it s best for your loved one to be in a facility. The guidance of a physician or a long-term care team will be needed. FOR CAREGIVERS Try to remember that as a caregiver, you re never entirely alone. The references on the following pages include hotlines for support and advice, and organizations that can provide referrals to facilities that are affordable and close to where you live. And, of course, your local Alzheimer Society can connect you to support groups and other community resources to help you navigate through the progression of the disease.

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18 Books Alzheimer s Disease (revised ed.). William Molloy, Paul Caldwell (Key Porter Books Ltd., 2003). ISBN: A Caregiver s Guide for Alzheimer and Related Diseases. Alzheimer Society of Prince Edward Island. Navigating the Alzheimer s Journey: A Compass for Caregiving. Carol Bowlby Sifton (Health Professions Press, 2004). ISBN: The Complete Canadian Eldercare Guide. Caroline Tapp-McDougall (John Wiley Canada, 2004). ISBN: Talking to Alzheimer s: Simple Ways to Connect When You Visit with a Family Member or Friend. Claudia J. Strauss (New Harbinger Publications Inc., 2001). ISBN:

19 CA0108AR009E