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What kind of support is there for a person with Alzheimer’s?

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March 22, 2012

- Alzheimer's Care, Blog, Elder Law Articles

Head to www.alzhope.com. That’s where people with Alzheimer’s can become part of a loving community, can post questions to others caring for their loved ones with Alzheimer’s and more. Another good place is the Alzheimer’s Association’s website (www.alz.org). It has a list of programs offered, including for supporting individuals diagnosed with Alzheimer’s. Link from this nationally focused website to the appropriate local association. That will get the person resources closer to home. Perhaps the most common support is an early-stage support group. These are sponsored by the Alzheimer’s Association and are spreading around the country. These are primarily for the support of individuals who have just learned of their Alzheimer’s diagnosis. An experienced facilitator guides the group in discussions about issues such as the meaning of the diagnosis, family dynamics and emotional issues, and financial and legal concerns. This is a place to express one’s deepest feelings in a safe place — with people who will identify and understand. These groups laugh, cry, eat and problem-solve together. The groups meet once a month on average, typically for about an hour and a half. Someone from the Alzheimer’s Association will be able to judge individuals to determine whether the meetings would be a benefit to them. Meanwhile, family members have simultaneous meetings in their own special area (often in the same building). Professional counselors, members of the clergy and home health agencies also are options for individuals’ support. You also can get in touch with the Alzheimer’s Disease Education & Referral Center (ADEAR) at (800) 438-4380 or www.nia.nih.gov/alzheimer’s, or the National Institute on Aging/Alzheimer’s Disease Information at www.nia.nih.gov or (800) 222-2225.
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My mom has Alzheimer’s and continually says things like, “I wish I were dead.” What should I do?

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March 21, 2012

- Alzheimer's Care, Blog, Elder Law Articles

There are a few possibilities for this. Your mother could be dealing with depression, or it could be her way of expressing her frustration about the disease. Regardless, she needs to be observed and monitored. A physician can examine her and prescribe an antidepressant if he thinks it’s warranted. So do call a doctor if you think it’s depression-related. Your mother needs assurance about her changing condition. Inquire regularly about how she is feeling and discuss things — not just Alzheimer’s. It is OK to talk until she gets in touch with feelings she might have such as frustration, anger or fear. This is where validation comes into play yet again: It is essential. Say things such as, “I know you’re not feeling yourself lately, but you are so wonderful, Mom. That hasn’t changed.” Or maybe, “Mom, please tell me what you are feeling that makes you want to die.” Odds are she will talk about how inadequate she feels. Constantly reassure her, tell her she is loved and needed. Then go another step and give her opportunities to help so she feels she has something to contribute to the family. All human beings need to feel they are contributing. When Alzheimer’s or dementia hits, however, it’s easy for a person to feel he or she has nothing to offer. That’s where loved ones must see to it that this individual is given an environment where he or she can feel needed and useful. Provide opportunities to help with chores around the house. No matter what the activity is, modify it as needed in order to make the person feel useful. It makes no sense to start a chore set that is too difficult, or start appropriately and then not simplify as needed. For example, if laundry were the focal point, your loved one might be able to start with gathering, loading/unloading and folding the clothes. Also measuring soap, setting the dials, drying and folding could be included. But then, as the disease progresses, tasks might need to be peeled off or scaled back. This still allows your loved one can keep his or her “laundry” duties and identity. For additional information, get our FREE “Indispensible Alzheimer’s Resources Kit” by clicking here.
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What can I do to make my house safe for an Alzheimer’s patient?

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March 8, 2012

- Alzheimer's Care, Blog, Elder Law Articles

A person with Alzheimer’s is likely to walk, pace or wander. As a caregiver, you must allow this type of behavior. But you have to create a safe environment for it. People with Alzheimer’s have perception problems. Carpeting or other flooring with black patches can give the appearance of black holes that have to be stepped over. Shiny floors might appear to be wet, also causing altered behavior or motions. Good lighting that reduces glare will ease anxiety. Get the clutter out of the house! It is very important that things such as plants on the floor, footstools, baskets, and any papers or magazines not be left lying around. Remove these and any other things that could be construed as obstacles. There are many vendors that have products that can increase home security appropriately. In fact, there are so many products, a prudent review of their capabilities, costs and pros/cons is in order. Some have bells or alarms, while others can quietly page or notify someone off-site. There are special locks and door aides that also can help keep individuals with dementia safe. Monitoring equipment is plentiful. A common baby monitor works especially well for monitoring at night. If your loved one is prone to falling out of bed, lower the bed (even putting the mattress on the floor) and/or put an extra mattress(es) next to the bed to cushion any tumble. There are also monitors available that can tell you whenever your loved one gets out of bed, or rises from a chair. A good place to find out more about home safety devices is http://www.alzstore.com. Places that sell baby-safety equipment are also good, as are outlets such as Radio Shack. There are plenty of manufacturers and sponsors out there — be sure to compare prices and quality whenever possible. For further information, please access our FREE  “Indispensable Alzheimer’s Resource Kit” by clicking here.  
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Does Alzheimer’s disease ever bring positive personality changes?

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February 27, 2012

- Alzheimer's Care, Blog, Elder Law Articles

Yes, it can — but probably not the way you think, or may be hoping for. What Alzheimer’s can do is essentially erase bad behaviors or attitudes, which fall by the wayside as memory and decision-making abilities fade. When something like alcoholism, bipolar disorder or schizophrenia is present before the onset of Alzheimer’s, it “goes away” as the disease progresses. This has led some people who have loved ones with Alzheimer’s to say dementia or Alzheimer’s has “blessed” the person. If the victim was abusive or harsh beforehand, he or she might become happy, loving and docile afterward. Sometimes the families can joke about having a support group for people who are happy about Alzheimer’s. One man had an alcoholic wife for most of their 50 years together. This included the rearing of six children. As Alzheimer’s symptoms started to take more and more control of her mind, she forgot to drink and became more loving and soft-spoken. It was as if the dementia had brought out the best of her. She showed sides of herself that close friends and relatives had not seen in many years. Her children liked visiting, and she was kind to them. She also showed a good sense of humor. Often, her husband said those years were some of the happiest times of their married lives. In some ways, he was grateful for the dementia that claimed his wife’s mind. He went as far as to suggest that the disease had given him and his wife a second chance to live together happily. She stayed in their home, and he was her primary caregiver until her death. Alzheimer’s is a tragic disease, but sometimes it brings blessings.  For more information, check out our Indispensable Alzheimer’s Resource Guide which is available FREE online by clicking here
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Having heard a lot about agitation, I’d like any extra advice I can get

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February 22, 2012

- Alzheimer's Care, Blog, Elder Law Articles

“Love cures people. Both the ones who give it and the ones who receive it.” 

— Karl Menninger

The above is a good quote to keep in mind. Dealing with agitation and/or dementia can be a marathon struggle. Choose your battles wisely and know that just because a person’s behavior might be bothersome to you, that does not mean it is an issue for a person with dementia. If you’re stressed about a loved one’s behavior, first ask yourself: Is this person in danger? Is anything detrimental to his or her health? Do I really have to do anything? Or might I be making a mountain out of a molehill? Here’s a good example: Your loved one is getting dressed — with multiple layers of clothing. This is a change from pre-dementia days. Before worrying, getting angry or trying to change anything, ask yourself: “Is it really hurting anyone?” If the answer is “no,” then let it go. Confronting someone with dementia about this and making him or her change clothes, could produce agitation, and possibly an angry outburst. Remember: Your goal in this type of situation is to prevent or divert any stimulus that could bring on agitation. As typical adults, we don’t like being told what to do. A person with dementia is no different in this regard. Being able to “go with the flow” on your part will go a long way; concentrate more on the issues that are truly serious enough to address. If you can do this, you and your loved one’s lives will be much less stressful. We must constantly remember an underlying premise: People with dementia always need to feel loved, useful and needed. We must help create an environment that shows them love. We also must allow them to help as much as they want, and in so doing set them up for success. A big tenet of this is coming to grips with “behavior acceptance.” As caregivers and loved ones, we have to realize unwanted behavior is part of the disease process and that there is a reason for it. When we think this way, we can respond more effectively to situations where agitation is present, as well as others that need attention. What are some strategies for doing this? For example, instead of putting someone on the defensive with something like: “Your clothes are dirty. Would you please change into something clean?” You could phrase it this way: “Let’s go change our clothes so we an go to the store.” This directs action but it is less demanding of the person with dementia. By involving yourself, it comes off as less threatening. Use this line of thought, if it will help: “We cannot control what comes our way, but we can control how we respond.” If our thought preparation is, “How can I best respond to this situation or behavior?” it averts putting the onus on your loved one as “the problem.” The person with dementia is not able to change, so we have to.
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Sometimes words don’t seem like enough when trying to communicate with someone with dementia

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February 16, 2012

- Alzheimer's Care, Blog, Elder Law Articles

Nonverbal communication is important, more so perhaps with someone who has Alzheimer’s or dementia than with others. That goes for communication in both directions: from you and to you. Body language can be responsible for up to 80% of all communication. It is very important therefore, when communicating with our loved ones to do more than just get the “right” words. Facial expression and tone of voice are a big part of your message. Alzheimer’s patients are still sensitive to people around them and can be rather intuitive. They know when someone is not being sincere. Similarly, they can be very aware if they’re being excluded from something or being talked down to. People with Alzheimer’s can sometimes look into your eyes and seem to read your soul — like a “sixth sense.” Be aware of the body language they may be sending your way. Bouncing up from a chair and pacing around could indicate, for example, that a visit to the restroom is warranted. Or it could be an indicator of some type of pain or discomfort. Always keep in mind that pain could be a part of the equation. As for calming your loved one’s agitation or anxiety, sometimes less is more — as in talking less, or not at all. Sometimes you don’t need to say anything. Touch is an important part of the human condition, so resort to hugs and gentle touches on the hand, arm or shoulder often, if you can. A simple hug can dramatically change a person’s mood instantly. Sometimes, an angry caregiver might not want to give a hug, but that’s the time when your loved one might need it most. Embrace her, and the opportunity to improve one’s existence. It might be stepping out of your comfort zone, but the results could amaze you. A hug can release tension immediately (in your loved one and you). A gentle massage or back run also can soothe the mood and have a relaxing effect. For more information, download the Indispensable Alzheimer’s Resource Kit which can be obtained at no cost by clicking here     
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How can I minimize my loved one’s agitation while trying to communicate with her?

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February 15, 2012

- Alzheimer's Care, Blog, Elder Law Articles

An important part of any type or relationship is communication. An often tough task becomes increasingly difficult, however, when a person with dementia is involved. Both processing and expressing information become more difficult, which can lead to frustration, which can ultimately manifest itself as agitation. Anything from mere pacing to lashing out can be a sign of agitation. As a caregiver, you want to avert agitation as much as possible. Effective communication can help. Below is a list of ways to improve communication. It is by no means complete, but if you follow these tenets, you’ll be doing well:
  •  Talk with a calm presence
  • Don’t argue — you’ll never win
  • Validate feelings
  • Smile and be pleasant
  • Approach from the front so you don’t startle your love one
  • Identify yourself, if needed
  • Maintain eye contact
  • Ask one question at a time
  • Go slowly. Remember that hurrying heightens frustration
  • Use short sentences
  • Give plenty of time to respond
  • Repeat information as needed. Repetition is good and usually helpful
  • Use touch, such as on the shoulder, knee, back or hand
  • Give hugs — many times a day
  • Laugh together
  • A high-pitched voice might convey that you are upset so speak with a lower tone when possible
  • Speak clearly and directly (and, to repeat, slowly)
  • Don’t correct your loved one
  • Ask things nicely: Don’t make demands
  • If you feel your words becoming heated, stop. Take a deep breath. Try again later
  • Don’t take adverse behavior personally.
  • Respect the person as an adult; don’t talk down to him or her
  • If he or she cannot find or make the words, gently finish a sentence as needed.
  • When at all possible, allow choices — such as “Should we pay the gas bill or electric bill first?” or “Would you like tea or coffee?” etc.
  • Frequently praise your loved one and spread affirmation — for even the smallest things. Make phrases like these a frequent part of your vocabulary: “Thank you,” “Good job!” and “You’re the best!”
For more information, be sure to downloard the Indispensable Alzheimer’s Resource Kit which is available at no cost to you simply by clicking here.
       
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Besides medication, how can one deal with agitation?

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February 10, 2012

- Alzheimer's Care, Blog, Elder Law Articles

First, it’s important to be on common terms when discussing any word, concept or issue. This holds true for agitation. Many of us have experienced agitation at some point in our lives. When we get so emotionally overwhelmed, it leads to unrest. Let’s look at the meaning of agitation, as cited in several authoritative resources:

* “Extreme emotional disturbance.” (The American Heritage Dictionary of the English Language)

* “A mental state of extreme emotional disturbance, the feeling of being agitated; not calm.” (WorldNet 1.6)

* A stirring up or arousing; disturbance of tranquility; disturbance of mind that shows itself by physical excitement.” (Webster’s Revised Unabridged Dictionary)

Most people can identify such a feeling in themselves and use appropriate coping mechanisms. But this can be impossible for people with Alzheimer’s disease. Often, they are unable to get in touch with, or express, their feelings. When they experience agitation, therefore, it is hard for those around them — caregivers, family members and others — to understand or offer help. We won’t go in-depth into it here, but the issue of medication should be mentioned. Medication could be responsible for sudden changes in mood or behavior, and that includes agitation. A new medication or a changed dose might be the source of new levels of agitation. Keep notes and discuss them with your physician. Do not think you have to wait for your next appointment, which could be weeks or months away. Call right away for assistance. Realize that both prescription and over-the-counter medications can be responsible for heightened levels of agitation. Always consult a doctor before starting, stopping or changing any medication.
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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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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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