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I want to better understand my loved one’s agitation but don’t know how

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February 9, 2012

- Alzheimer's Care, Blog, Elder Law Articles

We must make an effort to try to determine what a person with dementia is trying to communicate when he or she displays agitation or other “symptoms.” Many professionals who work with dementia patients think that there is a cause of reason to every behavior. “If we spent as much time trying to understand behavior as we spend trying to manage and control it we might discover what lies behind it is a genuine attempt to communicate,” is how Malcolm Goldsmith of the UK Journal of Dementia Care put it. People with dementia must continue to be viewed as individuals — as people who continue to need to be heard and have feelings. Whoever we are, often we find the source of anger or agitation stems simply from not being heard. Everyone needs to have his or her feelings validated and/or understood. Insensitive or uncaring responses can alienate or agitate anyone. If, for example, a trusted friend is told about a sensitive issue that made you cry and responds with, “Why should that make you cry?” you will not feel as if you’re being truly heard. Your feelings certainly won’t feel validated. A better response from your friend would be something like, “I’m sorry you’re upset. Would you like to talk more about the situation?” Even though your friend’s feelings might differ from yours  — you might not become upset about the same things — she can still validate you. Take another example of validation, using an upset child. The child might tell his parents that he is being picked on at school. If the parents shrug it off or treats the subject too lightly, the child won’t feel as if he’s been heard, understood or validated. However, if a parent responds with, “That really upsets me, too” and asks to talk the problem out so “we” can make things feel better, the child’s feelings will be validated. The end result is the child will feel better about himself. This is critical. A parent might not view the situation at school with the same alarm or concern as the child, but that doesn’t change the importance to the child. It’s very important to remember that, in order to determine if the issue needs to be address, we must LISTEN. This is no less true with a person with dementia. He or she needs to be heard and genuinely validated, just like anyone else. His or her experience might not seem like such a big deal to us, but it might be to him or her. That is a critical aspect to remember. Many every day tasks can become difficult or overwhelming to people with dementia. They can start to feel unsure, inadequate, and even fearful as anxiety builds. Such people need to feel supported and the love that any of us need to get through difficult days. Be generous with lines such as: “You did a good job,” “Thank you for your help!” “You are a wonderful person” “You are in a safe place,” and “I love you.” Affirming statements such as these can boost self-esteem and give a person validation. What you say to them might quickly be forgotten, but the good feeling may last. Validate feelings, affirm often and genuinely listen.
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If I’m suspicious, should I have my loved one evaluated for Alzheimer’s risk? By whom?

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February 8, 2012

- Alzheimer's Care, Blog

The quick answer: yes. A doctor must be consulted for a full evaluation as soon as you notice the first symptoms of dementia —more than just mild forgetfulness or confusion. This type of professional check-up will help determine why the symptoms are present. Are they due to depression? Poor nutrition? Drug use or alcohol abuse? Organ dysfunction?  If your loved one has never been evaluated for dementia before, your best bet is to consult a neurologist or geriatrician. For those who have been diagnosed with Alzheimer’s, a geriatric psychiatrist should be contacted for signs of anxiety, depression, agitation or any other behavioral issues. You must be comfortable with any physician you use, especially since you’ll likely get into very personal lines of questioning. Remember: Everyone is different, so a doctor who might be appropriate for a friend might not work for you. That is OK and you should keep looking if you’re not satisfied. Doctor referral services can provide a list of appropriate physicians. It is often comforting to know you are using a doctor whom others have used and liked. Caregivers also might receive information and referrals at support group meetings so look into those, too. The reason it’s so important to get an early diagnosis of dementia is it can make treatment easier and more effective for all involved. Most importantly, it can lead to appropriate medication that might help slow the progression of the disease. An initial, thorough check-up should include a physical examination, medical history, neurological tests, laboratory tests, brain imaging and function tests. An individual diagnosed with dementia will see a geriatrician, neurologist or psychiatrist for any issues directly related to the dementia. But a patient should inform his or her primary care physician of the diagnosis, and continue with the doctor for general check-ups. Experts agree the best proactive strategy to achieve successful caregiving at home is to have a healthy caregiver. Alzheimer’s truly is a family illness. A doctor needs to be aware of the caregiver’s stress level and be willing to offer support, suggestions and encouragement. The best doctors in this field will be concerned about the health and well-being of the caregiver.  
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Where can I find information about Pick’s disease? What kind of support is available?

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February 6, 2012

- Alzheimer's Care, Blog, Elder Law Articles

Many other conditions and illnesses have deeper support networks and more easily attainable information than Pick’s disease. But help is out there, and you can do certain things to help you or your loved one, regardless. Pick’s disease is a form of dementia manifested by a slowly progressive deterioration of social skills and changes in personality, accompanied by impaired intellect, memory and language, according to the National Institute of Neurological Disorders and Stroke (NINDS). The disease varies in how it affects individuals, but there are some common symptoms that can appear at various stages of the disease. These include difficulty thinking, loss of memory, emotional dullness, lack of spontaneity, loss of moral judgment and progressive dementia. The range of onset can be from 20 to 80 years of age, though it most often affects people 40 to 60. The cause of the disease is not known, though researchers have discovered that patients typically have atrophy of the frontal and temporal lobes of the brain. Some nerve cells have characteristic abnormalities when viewed under a microscope at autopsy. There is no known cure for Pick’s but certain symptoms can be treated. Along with NINDS, the National Institute on Aging (NIA)performs research on Pick’s. A fantastic online Pick’s disease support group is based in the United Kingdom and can be found here.  You also can contact the Alzheimer’s Association or your local area Agency on Aging to inquire about support groups in your area. If there isn’t one available, be proactive and contact a local social service agency to start one. Receiving support from others, and giving it back to others in your situation, is invaluable.
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I have a brother with Down’s syndrome who also has recently been diagnosed with Alzheimer’s disease. What should I expect about behavior changes?

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February 2, 2012

- Alzheimer's Care, Blog, Elder Law Articles

Because individuals with Down’s syndrome are living longer than ever (in general), more are experiencing the onset of dementia. This can be very difficult for everyone to accept, especially if your brother was high-functioning. Odds are your family has become accustomed to having your brother take an active part as a family member. It’s not uncommon for those with Down’s to live at home with other family members into their adult years. But when the dementia sets in, behavior will indeed change. There’s no way around it. One of the changes will be memory loss, another possibly losing the ability to perform even the simplest activities of daily living. Dressing, exercising, even setting the table or generally helping out around the house might be lost skills. As a result, your brother might begin to withdraw and not want to leave the house due to feelings of insecurity and fear of suddenly unfamiliar routines and surroundings. A routine is critical for maintaining self-esteem. Always allow your brother to help at whatever the appropriate levels are to boost his self-worth. Provide a failure-free environment, to the degree you can. Make sure family members are on board with this, and have everyone compensate for your brother’s lost duties. [Note that it’s possible you could forget or temporarily not realize your brother is functioning at a different level. While physical disabilities are typically obvious, Alzheimer’s disease involves the brain, leaving the patient to look quite the same on the outside. You might expect him to be just like he was. This is not realistic. Go with the flow and let him be himself, at whatever stage he is.] As the sibling of an Alzheimer’s patient, you must allow yourself to grieve. You have lost a person you once knew at a higher level of functioning, and you will continue to lose him more as time goes on. Feelings of shock, denial, anger, isolation, fear and depression can be expected on your part. Write them down in a journal. Realize you will go through these stages. The final one will be acceptance. You need to get there — for your sake and your brother’s. But even when you get to acceptance, you will continue to grieve at times, and that is normal. How can you help yourself cope? Gather photos of your brother, you and your family. Look at them. We are given the gift of memory so that we can go back to when times were good, or at least better. This can be a painful activity, but through the pain you can find healing. Life will be different when an Alzheimer’s diagnosis is added to Down’s syndrome conditions. Lower your expectations. Let your brother do what he can, at the levels he can. If you go into, and remain in, denial, you will push for things that your brother is not capable of accomplishing. Then, you will both become frustrated. Accept him for who he is, where he is. Let him assist with activities that he will feel successful doing. Always find the appropriate level. This may be a continually sliding bar. Constantly assess — activities may be the same kind as before, but just at a different level of expectation — and modify your actions accordingly. A good, free reference source for any family member of someone diagnosed with Alzheimer’s is “The Indispensable Alzheimer’s Resource Kit.” Click here to check it out.    
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Do I tell my loved one she has Alzheimer’s disease — and how do I prepare the rest of the family for what is then in store?

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February 1, 2012

- Alzheimer's Care, Blog, Elder Law Articles, Estate Planning

This is one of those topics that has been debated by experts for years. Some feel that anyone diagnosed with Alzheimer’s should be told, while others think they should be spared the knowledge. What it comes down to is this: What do you think will be best for your loved one? Some people will go into a tailspin and become severely depressed. Others might take it more in stride. Would your loved one want to know, to help her cope? Keep in mind, if you don’t speak up, someone else is liable to slip and that would be devastating. If there is a good doctor-patient relationship, it is best to let the doctor relay the information in a somewhat matter-of-fact way. A family member, however, should be with your loved one when the physician talks with her. Then, after the doctor broaches the subject, you have an opening to call other family members and let them know. A family meeting is a good idea. Having the diagnosis out in the open is usually liberating and helpful for everyone involved. At this family meeting, you can begin brainstorming about what you want to do next. Getting an Alzheimer’s patient’s financial and legal affairs is a very important step early on. One very helpful resource is this free pamphlet on estate planning “Don’t Lose Your Wallet! The Indispensable Guide to Estate Planning.” Sometimes tension arises among family members when these topics are discussed. Whatever you do, keep in mind that extra pressure is not a good thing for your loved one. You should arrange a time when you can meet without him or her present so you can talk openly with family members without upsetting him or her. If it comes to needing a mediator, then get one. This is the time to act like responsible adults and do what is right for your loved one, nothing else. Allow the individual — and yourself and family members — to grieve. Alzheimer’s can be devastating to not only the patient but also family members and other loved ones. It’s important for everyone to take care of each other and offer support. No one should be hesitant about joining a support group. It helps to be with others in a like situation. There should be one or more support groups nearby for early-stage Alzheimer’s patients. Have your loved one get involved with one of them. It’s important for Alzheimer’s patients to have a forum to express themselves to others in similar situations. (This is true for many emotional conditions and situations.) If anybody is still having a lot of difficulty coping after trying out a support group, have them consult a professional counselor. It’s vital that you support one another. Teamwork will take you farther than working alone. Let go of circumstances you can’t control. Choose your battles wisely. And, as odd as it might sound, always try to keep a good sense of humor.
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Is Alzheimer’s disease hereditary? What should we be aware of?

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January 31, 2012

- Alzheimer's Care, Blog, Elder Law Articles, Uncategorized

The jury is still out on this one. Scientists now tell us that if you have a blood relative who has Alzheimer’s, your chances of getting it are much greater than someone who doesn’t. This does not mean, however, that if you have more than one relative with Alzheimer’s, your family has one of the forms of the disease that apparently could be strongly inherited. A good place to look for more information on this topic is the website of the Alzheimer Society of Canada. (http://www.alzheimer.ca) There is a lot of detailed information about genetic research and Alzheimer’s here. If you have a loved one with Alzheimer’s, it’s best to deal with the situation in a constructive way. As difficult as it might be, you should not worry about something that might or might not happen, ruining your quality of life in the process. People have become debilitated by the fear of possibly inheriting Alzheimer’s. Don’t fall into this trap. Put your thoughts into a journal. Obtain professional counseling if your normal routines start to fall apart. Whatever you do, don’t try to deal with this alone. Your best support group will probably be friends and family, so keep them near. Join a formal support group (and start one if there’s not one available for you). Even if it you just wind up going for coffee with a friend or relative, that’s a start that can be built upon. You need to talk about Alzheimer’s after it has entered your life (in whatever manner it does). Talking with others in a similar situation can be especially helpful since they will understand what you are going through and vice versa. There are many beneficial resources available in the Indispensible Alzheimer’s Resource Kit including resources to assist you in journaling.
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I feel so guilty that my loved one has been diagnosed with Alzheimer’s Disease! How can I get help with the guilt I feel?

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January 24, 2012

- Alzheimer's Care, Blog, Elder Law Articles

First, you must realize what the definition of guilt really is. That helps frame this discussion. Guilt is defined as “being responsible for the commission of an offense; remorseful awareness of having done something wrong; or self-reproach for supposed inadequacy or wrongdoing.” Quite often, we assign guilt when we shouldn’t. If you are feeling guilty while caring for a loved one with Alzheimer’s, you need to “let it go.” In other words, put it into perspective and give yourself a break. Don’t let others who might try to make you feel guilty succeed. Rise above it and take control over how you respond. You can’t control everything you want to but you can control your responses. In brief, that’s life. Guilt can be very destructive and play havoc with your internal mechanisms. This, in turn, can make you less effective in everything else you do. It can be a very harmful cycle — if you let it. Think about what you are doing if you are a caregiver. In brief, it’s this: You’re doing the very best you can. Your best is good enough. Remember, too, that you can always be your loved one’s advocate. If he or she is in a facility such as a nursing home, you (and your loved one) still have a multitude of rights and powers. Educate yourself about them and use them to your advantage. One good suggestion is to record your feelings in a journal. This will make it easier to reflect on what you’re doing over time, and then make adjustments. Most of the time, you will realize you have no reason to feel guilty. You might have siblings, other family members or family friends who try to make you feel guilty. Don’t let them do it. You can’t control what they are doing, but remember: You can control your responses, so be determined that you aren’t going to let them get to you. After all, you are the one who has stepped to the plate and volunteered — possibly even as the primary caregiver. You didn’t ask for your loved one to have Alzheimer’s or any other form of dementia. But you have chosen to help.  That matters. Let go of the guilt. Give yourself a break. Here’s a good saying to remember: GUILT: Give Undeserved Illusions Little Thought. Here is something, however, that you should give a lot of thought to: “The Indispensable Alzheimer’s Resource Kit.” It will help you deal with any feelings of guilt, as well as with dozens of other subtopics.  
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Are drug side effects or Alzheimer’s Disease itself responsible for hallucinations and delusions?

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January 23, 2012

- Alzheimer's Care, Blog

Both can cause hallucinations or delusions. It’s worth keeping in mind that hallucinations and delusions are not the same thing. First, delusions are beliefs that do not agree with existing facts and persistently remain, despite all evidence against them. Hallucinations can involve any sense but are usually associated with seeing or hearing. They cannot be confirmed by anyone other than the person experiencing them. If you think medication might be causing either of these in your loved one, consult the individual’s doctor. You also can do some research yourself by speaking with the pharmacist or by clicking into the medication’s own website. (Just type in the name of the medication in whatever search engine you use, and you should get the information you need.) Even then, if you believe a medication is the reason for hallucinations or delusions, check with the prescribing doctor before cutting off its use. Why? Many medications should not be stopped abruptly and need to be tapered off. Another cause of delusions and hallucinations can be dementia. Alzheimer’s disease, for example, affects each person in a different way. Some people have delusions. Some experience hallucinations. Some have both, some neither. A general rule of thumb is if the hallucinations don’t frighten or upset someone (they’re “friendly” hallucinations), the people around the sufferer need to just “go with the flow.” Validation is important when hallucinations appear to enter the picture. If a loved one says he or she hears or sees someone who isn’t really there, you can ask, “Are they nice?” or “What’s your friends’ names?” The situation gets more difficult, of course, if hallucinations are not friendly. The sufferer might think someone is out to kill him or her, violate his or her loving space or do some other type of harm. Validation helps in this situation, too, but getting it is trickier than with “friendly” hallucinations. This is where “therapeutic fibs” might come in handy. You won’t be telling the entire truth but it will be in your loved one’s best interests. If your loved one feels threatened, you can sympathize and say that you, too, were worried so you called 911 and authorities took the offender away. This might or might not put the person’s mind at ease; and even if it does, it might not last long. Unfriendly hallucinations can start up again and you will have to respond again. If such a routine persists, you should consult a doctor. For more information about Alzheimer’s and how it might affect a loved one, check out the free, Indispensable Alzheimer’s Resource Kit from The Law Offices of Anthony B. Ferraro, LLC.
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Should I move my mother who has early-stage Alzheimer’s across the country to be nearer to me? What’s the best environment for her?

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January 19, 2012

- Alzheimer's Care, Blog

Discuss this situation with her directly if she is still lucid and can be meaningfully involved in reaching a decision. If possible, have a face-to-face talk with her. If this means traveling to her home, use the opportunity to assess her living conditions and suitability to live alone. Determine if you are comfortable with her solo routine, and if in-home care would be a suitable accommodation. This could set the stage for your hiring a geriatric care manager to look after her when you leave. If this is something you don’t want to do or isn’t feasible, then you can explore care facilities in her area. Discuss the situation with a social service agency near where your mother lives to find suitable resources. You can still hire a geriatric care manager to make regular visits and report regularly to you if she does move to a facility. The manager would be your liaison and be an advocate for your mother to ensure she gets proper care. THEN if you are still not comfortable, discuss her moving closer to you. There are numerous considerations for this, such as will she live with you or in a facility near you? If she were to live with you, would she need additional supervision (while you were at work or otherwise away)? In-home care is an option, and adult daycare may be another. You’ll want to get a hold of a social service agency in your area to obtain a list of nearby resources. With adult daycare, your mother could get supervision and also meals, socialization and activities. Some might also offer nursing services. These centers typically have transportation services of some sort so you should inquire about them, if you do not otherwise have a way to drop her off or pick her up each day. By talking with your mother, you will be able to form ideas about what environment would be best for her. Carefully consider the options — and be sure to bounce ideas off a trusted friend. Then make a decision and proceed with optimism. Alzheimer’s affects people all around Chicago and its suburbs. The Law Offices of Anthony B. Ferraro can help you plan what’s right for you and your loved ones. See our free, “The Indispensable Alzheimer’s Resource Kit,” for many more tips and advice.
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My wife has Alzheimer’s. Can she be affected by “Sundowning?”

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January 17, 2012

- Alzheimer's Care, Blog

“Sundowning” is the name of condition that results in a person becoming increasingly confused or agitated as the day wears on. While the actual cause of it is unknown, its occurrence can be somewhat predictable once a pattern begins. Fatigue, low lighting and increased shadows — the basis for the sundowning label — are factors known to bring on the condition. As they become more prominent during the day, an individual with Alzheimer’s tends to become more confused. Certain steps can be taken to make things easier on individuals with Alzheimer’s and their caregivers. For example, urging your loved one to nap after lunch, or at least have some “quiet time” during his or her daily schedule is a good idea. Relaxation can help a person “recharge” to deal with the rest of the day with less confusion or agitation. Create a good setting to promote relaxation by considering all five senses:
  1. put on relaxing music,
  2. get your loved one to a comfortable chair or bed,
  3. burn incense or a fragrant candle,
  4. dim the lights,
  5. turn on something that can create “white noise,” such as a bubbling water or a fan.
You can also gently massage her hands and arms with pleasant lotion. Always soothingly inform your loved one of the changes you are introducing, especially if you’re going to turn the lights off altogether or otherwise drastically change the atmosphere. This relaxation period is an excellent time for an outside volunteer (a neighbor, friend, church volunteer or other family member) to get involved your loved one’s care. It’s also a good way to get you, or whoever the regular caregiver is, a break from regular duties. Since shadows and darkness are what tends to make “sundowners” confused, make sure there is plenty of lighting after the relaxation period, and throughout the rest of the day. Placing nightlights throughout the living quarters is a good way to keep lighting up. To avert problems with sundowners who are in non-typical settings, such as a hospital room, be sure to keep familiar things on hand. These could include pillows, stuffed animals, a special radio or quilt and so on. As a person’s typical sundowning time period begins, try to keep him or her very busy. If they feel they are involved in something worthwhile, it could be enough of a distraction to lean toward neutralizing the agitated, confused behavior. More information on this topic, and others about living with Alzheimer’s disease, can be found in our free Alzheimer’s Resource Guide.  Whether you’re in Illinois or beyond, Alzheimer’s disease is a difficult challenge with which to deal. Don’t try to do it without help.
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