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Helping Teens Cope with a Grandparent’s Alzheimer’s Disease

teens and Alzheimer'sAn Alzheimer’s diagnosis challenges everyone in the patient’s family. Teenagers may sometimes seem to be wrapped up in their own worlds, but a grandparent who has Alzheimer’s disease can be very troubling for them and significantly affect their lives. Of course, it goes without saying that when a teenager’s parent is diagnosed with Alzheimer’s, it is all the more devastating. Teenagers are likely to need some help from older members of the family in understanding the disease and what they can do to cope. First, reassure your teenager that the emotions that they’re going through – which may include fear, regret, confusion, and anger as well as sadness – are all normal responses. It may be helpful for them to hear that this will be a difficult time in the family, and for you to acknowledge that this experience is a hard one for them specifically. And of course, it may be good for them to know that they are far from being the only teen in the world dealing with a grandparent with Alzheimer’s, even if none of their friends have any experience with the disease. If there’s no support group in your area that they can turn to, you may want to point them to the website of AFA Teens, a branch of the Alzheimer’s Foundation of America. There they can find articles written just for them, a community message board where they can connect with other teens, and numerous other resources. One of the most useful things you can do is to explain to your teenager how to communicate with their grandparent. The following are some tips you can pass along to them:
  • Approach a person with Alzheimer’s from the front, so that they are aware someone is coming.
  • Use their name to get their attention.
  • Ask questions one by one, rather than giving them too much to think about at once.
  • Maintain eye contact.
  • Speak clearly and not too fast.
  • Remember that if they forget your name, it says nothing about how much they love you. Just be patient and tell them who you are.
  • Use a voice that is gentle and kind.
  • Smile and use hand gestures and other body language. This sets a positive tone and makes you easier to understand.
One aspect of the disease that teens have trouble with is how to spend time with their grandparent. How do you connect with someone who doesn’t even remember you? Let them know that their grandparent will be glad to have someone come visit them and pay attention to them, even if they don’t know who that someone is. Here are some tips for visits:
  • Help grandparents do some basic, manageable chores. The feeling of getting something done and being useful can be very therapeutic.
  • Ask them questions about the distant past, for example: “What was your life like when you were my age?”
  • Listen to your grandparent’s favorite music. This may also get them talking about the past.
  • Go through family photo albums, especially older ones.
  • Play a game together or work on a puzzle.
  • Read them something that they might enjoy.
It can be easy to forget the needs of teenagers during this difficult time, especially for a parent who is scrambling just to take care of their aging mom or dad. But remember that teens can be very sensitive to what’s going on around them. Spending just a little time to help them adjust to what’s going on can make all the difference.
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Talking to Your Parent’s Doctor About Alzheimer’s

Talk with your parent's doctor about Alzheimer'sIf your parent has just been diagnosed with Alzheimer’s disease, it’s a confusing time for your family. One important item to add to your to-do list is to plan to have a talk with your parent’s doctor about their condition. Below are four important questions you’ll want to make sure you include. Keep in mind that in order to have this conversation, your parent will need to let the doctor’s office know that you have permission to discuss their health matters. 1. Why have you chosen a diagnosis of Alzheimer’s, rather than another disease? This question will help you better understand your parent’s illness. It can also be valuable in cases where family members or your parent wants to deny that they have the disease. Find out what signs demonstrate to the doctor that this is Alzheimer’s and not another disease or another form of dementia. You’ll also want to ask how your parent’s symptoms differ from the normal forgetfulness and confusion that can come with aging. 2. What medication is available that might help? Prescription medication is available that can help slow the progress of the disease or alleviate symptoms. However, not all patients respond to these aids, and the doctor may not think any of them are appropriate for your parent’s particular situation. Also know that at this point there is nothing that can be done to reverse the progress of the disease or to cure your parent. If the doctor does recommend medication, ask how it works and how it treats particular symptoms. Also make sure you understand the side effects, and what to do if your parent takes the medicine incorrectly or misses a dose. The doctor may be able to offer suggestions about how to make it easier for your parent to keep track of their drug regimine. If you or your parent is thinking about trying herbal remedies, be sure to include these in the conversation as well. The doctor may be able to share information with you that you haven’t previously considered, such as the latest research. He or she can also let you know if herbal remedies would be wise for your parent’s individual situation. For example, there may be harmful interactions with the medicine your parent is currently taking. 3. Are there clinical trials we can participate in? By participating in research studies on new treatments, your parent may be able to receive cutting-edge care for free. However, these arrangements are not without risks. Your parent’s doctor can help you determine whether volunteering in clinical trials would be a good idea. 4. How can I reach you if I need you? This may be the first time you’ve had any conversation with your parent’s doctor. Make sure you know the office’s procedures for getting in touch with the doctor. Does he or she take questions over email? What should you do if your parent is having a medical emergency and the office is closed? Having the answers to these questions can ease your mind greatly and help you prepare for the unexpected.
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Discussing Alzheimer’s with Family Members and Friends

Stigma against Alzheimer's prevents seniors from getting diagnosed.An Alzheimer’s diagnosis can be isolating, both for the person with the illness and for their caregivers. Illness can often create distance between those who were once close, and the nature of Alzheimer’s disease compounds the problem. Others are unsure if the person will remember them or if they’ll behave inappropriately. Still others may remain in the person’s life, but not acknowledge the disease at all, and thus leave a big silence about a major life event. Many people who suspect they have Alzheimer’s avoid an official diagnosis because they fear the effects on their social world and the painful feelings of rejection and loneliness that would come with it. However, it is vital that patients get a diagnosis so that they can receive proper care. If someone close to you is going through this important turning point, here’s how you can help. Listen before judging. A time like this is ripe for family conflict. Should the person get diagnosed and when? If they do have Alzheimer’s, how will the family plan for the future? It may be that the Alzheimer’s patient has disagreements with the rest of the family, or people within the family are fighting among each other. You will have your own opinion on the issues at hand, but make sure you’re hearing out the other side and giving their point of view fair and compassionate consideration. Hold back on stating your viewpoint and ask others for theirs first, to make sure they have a chance to give input. A third-party mediator may be able to help if you worry that conflict will get out of control. Be supportive. One of the best things you can do for your loved one is to help them think through all the choices they have to make at this time. This may require you to keep your own emotions in check at a time when you might be feeling a lot of fear, so it may not be easy. Keep in mind that your loved one will likely be afraid of seeming to be needy or a worry-wart. Encourage them to talk through their concerns rather than keeping them private. Stay calm. At this time it’s very important to be patient, and not all of us count this as one of our strengths. But keeping your cool can go a long way towards maintaining a positive relationship with your loved one that will keep them open to your much-needed help. Remember that pointing out that you were right or expressing negativity may not be the most productive course of action. Put a focus on keeping a good relationship. Using these skills will put you in a position not only to support your loved one, but also help you bridge the gap between them and family and friends. You can play an important role in keeping the peace.
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How to Handle Hallucinations and Delusions

Dementia patients may experience hallucinations.One of the more unnerving side effects of dementia are the delusions and hallucinations these patients sometimes suffer. They can leave the patient very troubled and scared, yet they’re difficult for loved ones to address because they know these illusions aren’t real. Around 25% to 40% of dementia patients experience these episodes. They will often respond with agitation, aggression, or even violence. This behavior may be more threatening and troubling as the disease advances, as patients are more likely to respond to what’s going on in their minds. Your initial instinct might be to try to reassure your loved one that what they’re seeing isn’t real. But this is often a mistake. The patient can easily get the perception that you don’t take them and what they’re seeing and feeling seriously. Rather than being comforted, they may feel isolated and hurt. Instead, what you’ll want to do is offer some acceptance to their reality. No, you don’t have to believe that mom’s long-dead sister is in the room with you, but you should understand that the experience is real for your mother. If you do this, you’ll bring stability to the situation much more quickly than if you tried to fight them on what they’re perceiving. Be reassuring: “You must feel frightened. I would be frightened too. But I will stay here with you to make sure you’re safe.” It may also help to offer some form of physical comfort, such as a touch on the arm. No only does this reinforce that you are there for them, but also helps draw their attention towards you and away from what’s bothering them. You can also help make the problem vanish by getting your loved one to a different environment like another room or outside for a little fresh air. Some hallucinations might be comforting. Dad may be imagining that he hears birds pleasantly tweeting. If he seems to be happy about this, you may not want to disrupt this at all. You only really need to worry if what your loved one is perceiving puts them or others in some kind of danger. Unfortunately, you won’t always be so lucky and there isn’t much you can do to prevent these incidents. Medication may help, but it may have side effects that bring new problems. Understand that feeling distressed and overwhelmed in these situations is normal. By learning all you can about this effect of dementia, you can help yourself to cope with it more effectively.
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The Process of Alzheimer’s Memory Loss

Alzheimer's memory lossHow memory loss in Alzheimer’s patients works may at first seem mysterious to those whose loved one’s are suffering from the disease. The senior can tell stories about their childhood, but doesn’t remember that they had lunch just a half hour ago. It just doesn’t seem to make sense. First, it may be helpful to learn a little bit about the nature of memory. When a person who does not have Alzheimer’s undergoes an experience or learns a piece of information, a part of the brain called the hippocampus plays a role in taking in that new tidbit. However, in Alzheimer’s patients the hippocampus is one part that suffers first, thus preventing new memories from registering properly. Also, memories that have an emotional component to them are stored separately from other memories. This may explain why dad can’t remember what he did with his glasses, but can talk about his service during the Korean War. As the disease advances, even older memories stored elsewhere in the brain begin to disintegrate. Also, plaque builds up in the nerve cells in the brain, which may lead to disorganized thinking or confusion. Unfortunately, there is nothing we can do yet to stop this process. However, you can help a loved one with Alzheimer’s by sticking to a routine. The regular schedule will help them be more comfortable and feel less confused. Also try to reduce the amount of extra stimulation, such as noise, that the patient is subjected to. All the additional activity can contribute to disorientation. It can be very stressful for caregivers to watch their loved one lose their memories, especially their most-cherished ones. During this time, be sure to take care of yourself. Seek out friends and family who can give you support. Caregivers can too easily feel alone and shut themselves in their own worlds. Don’t let this happen to you. You might find it helpful to learn as much about Alzheimer’s as you can, so that you know what to expect. Never take your loved one’s forgetfulness personally: it is the disease that is causing your dear Aunt Judy to forget your name, not any lack of love on her part. And finally, choose to make light of the situation as much as you possibly can. Yes, the pain will still be there, but if you can laugh about the effects of the disease, you can manage to ease the negativity you may be feeling.
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Alzheimer’s 101

Alzheimer's introductionIf you or a loved one has recently been diagnosed with Alzheimer’s disease, you probably have a lot of questions. This article is intended to address some of the most basic facts and get you started in the learning process. Alzheimer’s disease, which is the most common form of dementia, is a problem with the brain and affects a patient’s behavior, thought processes, and memory. The symptoms are fairly minor to start, and then gradually get worse to the point where they drastically affect the individual’s everyday life and they need other people to help them complete even basic functions. There are several million people in the US who have Alzheimer’s disease. It usually starts sometime after 65 years of age, and becomes more likely the older a person gets. Among those people older than 85, some estimate that half have Alzheimer’s. One of the first signs of Alzheimer’s disease is problems with thinking skills, especially memory, and behavior alterations. The person may be moody, restless, or confused. They may display uncharacteristically poor judgment or have trouble processing visual information. They may also experience difficulties communicating and using language. Alzheimer’s can be difficult to diagnose because its symptoms can easily seem like the normal effects of aging. The disease is frequently ignored in the early stages. How can you know the difference? When you see the doctor for a diagnosis, he or she will run a variety of tests designed to measure cognitive functioning and behavior. The only way anyone can know for sure that a person has Alzheimer’s, though, is to see if there is plaque in their brain tissue. This usually isn’t possible until after the patient has passed away and an autopsy is performed. The disease may take anywhere from around 5 to 20 years to run its course. Because it damages the brain, it can cause a person to have trouble with basic physical functions such as swallowing, which can in turn lead to death. Alzheimer’s patients are also more likely to get an infection. As of yet, no cure has been found for Alzheimer’s disease, but there are treatments available that can lessen some of the negative effects of the disease on patients and caregivers, as well as slow its progression. To learn more about this disease, see the articles below: How to Choose a Memory Care Facility When Your Parent Forgets Who You Are Three Big Questions to Consider After an Alzheimer’s Diagnosis
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New eBook: How to Choose a Memory Care Facility

Free memory care ebookAre you searching for a memory care facility for your loved one, but aren’t sure where to start? Our new complimentary ebook, How to Choose a Memory Care Facility for Your Loved One, is a thorough resource that tells you everything you need to consider when making this important decision. Alzheimer’s disease and dementia are challenging conditions, both for patients and for their families. There comes a point when the care mom or dad needs goes beyond what adult children can provide on their own. It’s at this stage that families begin to seek out a place where their loved one can not only have their care needs met, but hopefully thrive as well. This guide covers the following:
  • What to look for regarding a facility’s environment, safety, staffing, quality of care, and policies.
  • A checklist of important details that can help you distinguish high-quality care homes from the rest.
  • How to identify signs that a facility has serious underlying problems.
  • Types of facilities that have dedicated staff and highly personalized care.
  • Important considerations when evaluating the cost of memory care.
This ebook is a free resource provided courtesy of Raya’s Paradise. We encourage you to share it with anyone you know who is looking for a memory care facility for a loved one. Click here to access the book in PDF format. For the best quality, we recommend that you download the file to your computer, rather than reading it in your browser.  
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When Your Parent Forgets Who You Are

Photos can help Alzheimer's patients remember loved ones.On your last visit, Mom seemed kind of down so you’re determined to cheer her up today. You open the door to her room. She looks up with a smile that reminds you of the days you’d run home from school with a 100 on your spelling test. She rises and gives you a big hug. “Ella, I am so glad to see you. I was beginning to think you’d forgotten all about me.” She’s showing more enthusiasm than she has in weeks. So why is your stomach in free fall, and your heart pounding to beat the band? It’s because your name is Barbara. Ella is Mom’s older sister who died four years ago. What do you do? You want to keep her spirits up, but you don’t feel it’s right to play along. Mistaking children for siblings or other loved ones is not uncommon in Alzheimer’s patients. Alzheimer’s patients lose short term memory but not their recall of the past. You look after her interests. You make sure everything’s going well. You’re her protector, just like big sister Ella used to be. Seeing you may have caused a cross wire. When Mom recalls her long ago, it’s like she’s living in a dream. Now you’re here but the dream remains. She’s made you a part of it. You want to wake her up, but gently. There are several things you can do. But first and foremost, do not take offense. Think of her misrecognition as a compliment. She’s connecting you with someone she loves. Secondly, do not argue with her. Don’t make her see. Help her see. Listen to her, let her say what she has to say, then try to re-direct her focus. Switch the topic. A change of scenery may help. Suggest going for a walk. Address her by name – Mom. Hearing that one word may be all it takes, but it may not always work. It’s in both of your interests to try to prevent this from happening again. Here’s a suggestion you may want to try. This may even be fun – for both of you. First, gather up all the old photos you have at home. Scour the basement or the attic. What you want is a time line of Mom’s life: as a young mom, with you and all your siblings, and on through all the stages of the family’s life If you’re lucky you can extend it even further back, with photos of Mom when she was a child – with Aunt Ella. This may keep her in the present and if nothing else, will be an emotional bonding experience for you both. Next, gather some present time photos. You, Mom, your siblings, the grandkids, if they visit. That’s all you need. You don’t want to confuse her or you’ll be back where you began. Bring some cute labels. Make it a project. Label each photo, and create a timeline from past to present. This may help to trigger mom’s memory about who you are, by connecting an image of you from the past with what you look like now. Hang the timeline in a prominent place in her room. Finally, you don’t want to go down this path again, so next time you visit, identify yourself – face to face. “Hi Mom! It’s your daughter Barbara.” If mom has a favorite nickname for you, refer to yourself that way. If you can keep her in the present, there’s no need to bring her back.  
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Three Big Questions to Consider After an Alzheimer’s Diagnosis

Plan for a future with Alzheimer's sooner rather than later.Learning that your loved one has been diagnosed with Alzheimer’s will bring a flood of worries and emotions. You’ll feel shock, grief, fear, and anger. You’ll wonder how you can help them and what changes will take place, both for them and for you. This will be a difficult time. In the midst of this whirlwind, though, know that there are decisions to be made, and it’s better to tackle them now rather than put them off. The earlier you do so, the easier it will be for everyone, and the more chance you have of making sure your loved one is involved in the process. 1. Who will take care of your loved one’s finances and medical decisions when they can no longer act on their own behalf? This is never an easy conversation, but it’s an essential one for all adult children to have with their parents. Hopefully, you’ll be able to discuss this while your parent is still competent enough to make arrangements, and you can get their wishes in writing. An attorney who specializes in elder issues can be a helpful guide, and the Alzheimer’s Association also provides a number of useful resources. 2. Who will care for your loved one? Don’t assume that a particular person, whether it’s your parent’s spouse or your sister who lives five miles from your parent, will be the one to take on the primary caregiving responsibilities. No one wants such a large commitment foisted upon them. Remember that someone with Alzheimer’s eventually will require constant care, and that may not be something that anyone in your family is able to provide. Those closest to the patient should meet to discuss expectations and the feasibility of different possible situations. 3. Where will your loved one call home? Most seniors will want to stay in their own home as long as possible, but at some point it’s likely that this living arrangement will no longer be viable. Think about how easy their current residence will be for them to navigate as the disease progresses and as they continue to age. Consider both having your parent move to be closer to family and choosing an assisted living facility or board and care home. It may seem next to impossible to tackle these big decisions during such an emotional time. But you’ll be glad later that you’ve moved forward on taking charge of the situation. You can’t control the diagnosis, but you can influence how you and your family begin to move ahead.
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Coping with the Loss of Your Loved One to Alzheimer’s

Losing a loved one to Alzheimer's isn't easy.If you feel that you’ve already lost your loved one, even though he or she is still alive, you may be experiencing some of the classic and normal signs of grief that usually aren’t felt until your loved one has died. Reading articles, websites, and books about coping can be helpful, and you can also consider some of these ideas. Know That They’re Still There Remember that at one time, your parent knew a different “you.” You as a baby, a toddler, and a child were a different version of you, but it was you nonetheless. If you can see your parent as being at a different phase of his or her life, it can be less painful than allowing yourself to think that he or she is gone. Cherish the Memories Make the assumption that your loved ones can see and hear some of what you’re saying and doing. Talk to them, read to them, and continue the same as you would if they were sitting up smiling at you. It will absolutely give you much comfort in knowing that you have truly done your best. Be Kind to Yourself Were you patient enough? Did you love them enough? Did you respond quickly enough to feed them, change them, and answer the phone when they called? Were you…good enough? Yes. You were. The loving care that your parent is receiving now is a result of you being “good enough.” Your parent cared for you, and you were able to come full circle and care for him or her and ensure that he or she is receiving the best possible care. Explore Others’ Experiences When he was diagnosed at the age of 57, Tomas DeBaggio wrote Losing My Mind: An Intimate Look at Life with Alzheimer’s. His book, the first of its kind, chronicled the extraordinary account of his journey through the disease. He said that it “silently hollows the brain” and slowly “gobbles memory and destroys life.” He wrote the book for himself in an effort to remember his life before he lost it forever, but it serves as a landmark piece of literature that helps the aging and their families understand the mind of the Alzheimer’s victim. The first step in this challenging time is for families to understand that their loved ones are not gone. They may appear to be gone, and their doctors may say that their minds are gone, but they are still there. All research indicates that though they may not respond to much and they cannot express themselves, they do feel. Above all, be good to yourself. This time is probably at least as difficult for you as it is for them.
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