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Video: Losing a loved one to Alzheimer’s

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    >>> this morning on " forever young " alzheimer 's disease. millions of americans suffer from this progressive and debilitating condition. it can take an emotional toll on their families and caregivers as well. dr. richard isaacson is from the university of miami school of medicine and the author of "treating alzheimer 's, preventing alzheimer 's, a patient and family guide 2011 ." dale atkins is a psychologist. good morning to you both. yesterday we talked about age-related memory loss that happens to a lot of people around the age of 50. you had a huge response from people.

    >> i think people were heartened to know some of the issues of memory loss related to aging didn't mean they would have alzheimer 's disease which we'll talk about today.

    >> we need to define alzheimer 's.

    >> as opposed to normal age-related memory loss which is slowness of processing which is where you forget a word but it comes back to you. it's on the tip of your tongue. alzheimer 's is a progressive disorder commonly characterized by short-term memory loss , changes in behavior, sleep, orientation and date. it's a much more progressive and insidious disease.

    >> some of the signs would be that you may notice in somebody?

    >> we can have losing the keys, cell phones, forgetting appointments, getting lost while driving. basically not being able to take care of the things you were able to take care of before the onset of the disease.

    >> if somebody you know and love develops alzheimer 's, how do you begin to deal with that?

    >> well, i think how you begin is also not going to necessarily be how you end. how you begin is you are usually shocked and confused. you're getting a lot of information that you may not be able to process because it's a frightening diagnosis for people. what you can do is try to get as many people around you who can help you. support is important. learn as much as you can about alzheimer 's and learn as much as you can about yourself and what you need to do and who's going to help you because if you are the primary caregiver , what do you need in order to do things correctly? i say correctly because every person is different. also, be conscious that this is still a person and this is always a person. the dignity of the person is what is foremost. so the person needs to be safe, secure and you will change yourself as you relate to the person so that you will have to be very present, understand that there will be so many feelings that will overtake you at times. deal with the feelings in the appropriate situation so when you are with the person you are as pleasant, as positive and as focused as you can be.

    >> my dad had alzheimer 's, my sister did. my brother is now in a facility with advanced stage alzheimer 's. we can trace it back. he's only 62. when he was first diagnosed and if people have been recently diagnosed he knew it was going to happen. that was devastating for him. what do you say to those patients?

    >> it's important that as soon as we notice signs of changes, short-term memory loss , whatever the first symptom is, get informed, educated and see a qualified health care professional . the earlier we diagnose, the earlier we can treat. and the better patients do. there is nothing to be ashamed of with alzheimer 's. alzheimer 's disease is one of the most common diseases out there. if you're 85 or older you have a 45% chance of having alzheimer 's disease. so it's common. get out there, get informed. develop a network of caregivers, nurses, psychologists. see a social worker and a qualified health care professional . get diagnosed early.

    >> i think one of the issues, too, dale. we were talking about this on the break. if you have somebody in your life with alzheimer 's, very often people stop visiting that person and feel guilt about it but there is a disconnect because the person no longer knows who they are.

    >> often people don't know who they are, but there are so many ways to reach people. it's not just the familiarity of, oh, hi, meredith. i remember you. there are other ways we reach people. with music, with pets. we reach people with photographs from the history. you never know what's going to trigger that memory. we also reach people by just being with them, having a gentle touch and being able to connect in a way that is a human to human soul . if someone doesn't recognize you, don't give up. number one, they need to have social stimulation. people need to be engaged and the people who care for them need respite care . they need to have someone to support them. but additionally, you can be present and understand that if you're with someone at this moment, don't worry about the future. when they start saying something over and over again say, yes, i understand that's a concern to you and then distract. speak in short sentences. use concrete language. be gentle and keep yourself as quiet and calm as you can. people who have alzheimer 's are very often distracted and are bothered by loud noises and things like this. if you are there and you're calm and present, you can maximize your time together.

    >> all right. dale, thank you very much. dr. isaacson as well, thank you.

    >> thank you.

updated 1/25/2011 4:47:50 PM ET 2011-01-25T21:47:50

More than 5 million Americans have Alzheimer's Disease, according to the Alzheimer's Association, and almost 11 million people are unpaid caregivers to someone with Alzheimer's -- usually family members. Taking care of someone with dementia can be frustrating, lonely and heartbreaking. But there is help, and hope. Experts urge caregivers to reach out for support, and offer these tips for coping.

Dr. Richard Isaacson, University of Miami Miller School of Medicine, author of "Treating Alzheimer's, Preventing Alzheimer's: A Patient and Caregiver Guide."Caregiver support is essential. 

If stress and fatigue begin to affect the caregiver's own health and well-being, the patient's condition will also decline.  I advocate for a social worker to get involved early, and I spend a great deal of time with patients to make sure that the caregiver has adequate support. 

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I also emphasize quite strongly something that I learned from my cousin Cynthia, who did an amazing and admirable job caring for my Uncle Bob.  I try to convey to caregivers that it is okay to let people help.  Taking periodic breaks is essential as it helps to keep up ones strength so they can do more for their loved one later.  Some other tips that she taught me were to fold laundry together (especially mixing and matching socks), brush the dog, or collect shells on the beach.  As time progresses, additional individual and group activities can be found to both help the caregiver, and give them a well-deserved break.

I suggest reaching out to the Alzheimer's Association (www.alz.org) as an initial contact.  Early and continued caregiver support is essential.  I also suggest an evaluation by a licensed clinical social worker, therapist, or geriatric care manager who can help give advice, support, do a home assessment, etc.  They can also suggest activity programs within the community and other available resources such as adult daycare and activity programs (when necessary).  I also consider a home health assessment and visiting nurse referral to help with medication management across all stages of the disease, especially if there are recent medication changes or if the patient or caregiver is having trouble keeping up with medication management.

There are a variety of support groups all across the country.  Each year there are a multitude of educational programs and conferences sponsored by the Alzheimer's Association and other organizations for patients, caregivers, and family members.  Try contacting the local chapter by phone or review their website. 

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Psychologist Dale Atkins, Ph.D.

People with Alzheimer’s are people first. They need to feel valued, be treated with dignity, encouraged and loved.

Many feelings come up when dealing with someone who has Alzheimer’s Disease (or if you suspect your own vulnerability). But in the end, it is all about attitude. Care-giving forces you to examine yourself and your life. It invites you to revisit this particular relationship mindfully, openly and respectfully as you become aware that the past cannot be changed.

Be open and be prepared. Breathe, realize most things are out of your control, expect to be surprised, believe you will handle whatever happens, relax your mind and calm yourself. When your loved one sees you calm and comfortable, they pick up on that mood as well. Smile and let them know you are happy to be with them.

If you understand why your loved one is acting in a certain way, you'll be more likely to respond with skill and patience. Your purpose is to take care of yourself, to bring joy and to find joy. This is more possible when you stay in and focus on the moment.

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Here are some practical tips on how to do that:

Focus on what is left, not what is lost. Find a new normalcy and adapt with a positive outlook. Appreciate what you have NOW. Look at photos and tell stories. Avoid saying, “I told you this before.” Avoid tests, which can make the person feel stressed, devalued and insecure. Make sure the person’s basic needs are met (hunger, thirst, bathroom, fatigue). Show the person how to do what they need to do, rather than doing it for them. This helps maintain skill level as well as independence.

Keep yourself and the environment calm and peaceful, with few distractions. Whenever you can, limit visual and noise distractions so the environment is less confusing. Reducing the “noise” of an environment helps keep the mind focused and helps the person follow a thought or an activity without being sidetracked. Interact face-to-face and when you are in a group, keep the group small and help the person follow what is going on. Help them follow conversation with cues such as, “Jim is going to tell us about his new car.”

Keep the person safe and feeling secure. Treat the person as an adult (NOT as a child). Condescension breeds resentment and tension. Try to keep to a scheduled routine. Some days and some situations are better than others. What works one moment may not work the next but keep track of what works. Try music, prayers, dancing, taking walks, petting animals, being in familiar environments, sports, playing cards — even if the game is his or her own “style” (someone who played chess well may enjoy moving the pieces around the board).

Keep yourself and your loved one physically active and eat healthfully. Exercising (a walk in the neighborhood, at a mall, in a garden; taking a swim) every day gets more oxygen to the brain and reduces the risk for disorders that can lead to memory loss, such as diabetes and cardiovascular disease. And exercise appears to enhance helpful brain chemicals that protect brain cells. Whether you go out to eat or cook at home, overdo it on the vegetables, fruits, whole grains and “healthy” fats. Antioxidants keep the brain cells firing and B vitamins protect and help reduce the risk of cardiovascular disease. Increase foods with Omega 3s for brain health.

Keep your language simple and sentences short. It is difficult for people with Alzheimer’s disease to follow complex thoughts and sentences. Offer reminders. Just speak slowly, clearly, in a natural tone of voice, and keep sentences short and to the point. You can say a lot in few words and have confidence that your loved one is following you. Use the person’s name. A gentle touch helps to keep them connected. Always tell the “plan” and keep it simple: “We will put on your shirt and pants.” "We will go to the grocery store.” Repetition is part of the routine. Consider each time you say something the first — because it is, for them. So keep your anger, sadness, and frustration out of the interaction. Address it; just not in the presence of your loved one. They are not doing this to you. They have a disease which causes them to change. That which was familiar, predictable and comfortable now appears totally different. Things, people and behavior become strange, often scary — on both sides.

Dale V. Atkins, Ph.D.. is a licensed psychologist with more than 25 years of experience as a relationship expert, focusing on families, couples, parenting, aging well, managing stress and maintaining balance in one's life. Dr. Atkins has a private practice in New York City

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