A couple of years ago, I wrote about a wonderful Alzheimer’s disease (AD) resource in Fairfax County, Virginia located about 15 miles south of Washington, DC, the Alzheimer’s Family Day Center (AFDC). Not only are they a day care center for AD patients, but they have excellent programs for caregivers. I recently attended one such program on communicating with Alzheimer’s patients.

Titled “Understanding the Person with Dementia: How to Communicate Effectively,” it was presented by Susan Stone who is with AFDC and does outreach and education. Susan is an excellent communicator herself and interacts with the audience extremely well. I want to share some of her thoughts in this article and I will continue next month.

Because communication is only 7% verbal and the rest nonverbal, it is important to not limit your communication to just words. People with Alzheimer’s prefer not to talk on the phone and initiating phone calls is difficult. They have difficulty keeping up with conversation and may not understand your words. Their attention span is limited and they may have trouble finding the correct word. Furthermore, they may pick up only every three to four words.

For example, the conversation may sound like this:

___ WANT ___  ___  ___ GET ___  ___  ___ TAKE ___  ___  ___ . WE ___  ___  ___ APPOINTMENT ___  ___  ___  ___ WE ___  ___  ___ BEFORE ___  ___  ___ HOME.

NOW ___  ___ HURRY.

Here is the entire message:

I WANT you to GET up now and TAKE a good shower. WE have a doctor’s APPOINTMENT at 11:00 and WE can have LUNCH before we go HOME.

NOW please just HURRY!

Getting angry and adding a sharp tone of voice is not going to make this message any easier for the AD person to decipher. Here are some suggestions Susan offered:

  • Restating key words will help.
  • Give one direction at a time.
  • No rushing – time does not mean anything to an AD person.

Here are further suggestions repeating just the key words.

  • Get up. (Offer your hand).
  • Shower.

This is all the person needs to know at this point. They don’t really need to know about the appointment and having lunch is too far in the future to mention it now. You want them to take a shower and all they might remember is having lunch.

More suggestions will be coming next month. I hope this gives some understanding as to why communication is so challenging for those with dementia.

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Caregivers of Alzheimer’s disease patients have one of the toughest jobs in the world and yet sometimes one of the most rewarding. Stephanie Jewett, RN, MBA, in an article in ezinearticles.com, offers the following tips for caregivers in a home setting.

  • Find something they love to do and keep that favorite thing going everyday, i.e. take a walk in the park, watch their favorite television show or read articles in a magazine. Go to the Internet and learn more about their favorite subject.
  • Keep life simple; follow a schedule everyday. Eat at particular times, keep hair appointments to one specific day a week, and enjoy a meal out once a week, on the same day.
  • Get lots of rest – take a nap if one feels tired, but don’t sleep the day away. Get up at the same time each day, bathe and then have a nutritious breakfast each and every day!
  • Go through scrapbooks and old pictures, reminding them of family members — their names, ages, etc.
  • Get a dog or a cat so that the patient has some responsibility and company in the home. Pet therapy is one of the best methods known to keep a person happy and healthy.

As a caregiver, your top priority is to take care of yourself so that you will have the strength and stamina to take care of your loved one. So the tips for your Alzheimer’s disease patient apply to you as well. Take good care!

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Hope for Alzheimer’s Disease

I know it’s difficult for families with an Alzheimer’s disease patient. What looks like so much promise for those of us who are candidates down the road, will not be a solution for those currently experiencing this dreadful disease. What’s available today are only five medications discussed previously here. These may slow down the progression of the disease, but they also have side effects (like most prescription medications) and are not permanent solutions. There are also many clinical trials going on. The Alzheimer’s Association is an excellent place to start your research.

This year there has also been a greater focus on caregivers because of organizations like the Alzheimer’s Foundation of America and celebrity involvement. Earlier this month, Al Roker of the Today show, hosted the first telethon, Together for Care, for the foundation. See video below.

Occasionally, we hear good news such as “New Piece of Alzheimer’s Puzzle Identified” which is very encouraging. Sometimes encouraging news turns out to be disappointing, but there’s always hope. In this new study, researchers from the Mayo Clinic in Rochester, Minnesota found that endothelial dysfunction increases production of proteins that provide the raw material for the amyloid plaques seen in the brains of people with Alzheimer’s disease. Simply put, endothelial dysfunction is a problem with the lining of the blood vessels. Read the full news release here.

So, as we turn the page to a new calendar year, let us keep the hope in our hearts. I wish all of you and your families a heart-warming new year.

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Last week Heather Stephenson of Edelman, the public relations firm for the Pharmaceutical Research and Manufacturers of America (PhRMA), sent me links for a report (2010 Report: Medicines in Development for Alzheimer’s Disease) and video from PhRMA. In my next post I will talk about the report. In the meantime, the video below reminds us of the staggering numbers.

As we get ready to celebrate Thanksgiving 2010 in the United States, I am thankful that the pharmaceutical companies are in communication with each other as well as joint venturing with many research institutions to find a cure for this devastating disease. The video below reminds us of the staggering numbers of people affected by the disease itself, not to mention the effects on all of the caregivers. Our thoughts and prayers go out to all affected by Alzheimer’s and related diseases and wishing everyone a very Happy Thanksgiving!

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In my last post, I talked about a handy booklet available for caregivers at the Alzheimer’s Family Day Center. I just finished reading another valuable resource, a book by Frank Fuerst, published in 2007, Alzheimer’s Care with Dignity. This is definitely a handbook worth owning for anyone caring for someone with Alzheimer’s disease. Frank Fuerst shares his 17 years of experience caring for this wife. In his Preface, he says:

After doctors diagnosed June Fuerst with early onset Alzheimer’s disease (AD), her husband attended lectures and read every available book and article on the subject. He followed most advice and found what worked, and what did not. He kept daily notes. As the disease progressed, he found himself in uncharted territory and relied on his own creativity and a process of trial and error. He realized that some information he needed was not available from any source.

Alzheimer’s Care with Dignity is not a big book — just over 200 pages — but loaded with helpful information. It’s an amazing book to read, but more importantly, it’s an essential handbook to have at your finger tips. Caregiving for an Alzheimer’s patient is an extremely challenging and daunting task, particularly in the later stages and unfortunately, everyone is different so that the suggestions he makes may not work in your situation. Facetiously, he says of the job:

  • On call — 24 hours each day
  • Regular pay — None
  • Overtime pay — None
  • Holidays — None
  • Sick time — None at night, weekends or holidays
  • Time off — None without a paid replacement
  • Ambidexterity — Mandatory
  • Needing more than two hands — Mandatory

I will introduce other chapters in future posts. If you cannot afford to buy the book, check to see if it’s in your local library.

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Mary Lucas (Photo courtesy of FCPS)

Some caregivers have discovered a useful way of coping with caregiving challenges—they write. Writing their story makes it easier to carry.

Mary Lucas, for example, is a professional woman who specializes in providing marketing and sales support to credit unions. She is also the primary caregiver to her mother, who has Alzheimer’s Disease. Mary began writing when her only child left for college. Here, she reflects on writing about her mother, what that’s been like, and her thoughts about attending a “Writing Workshop for Caregivers” that will be held on Feb. 20, 2010, in Alexandria, VA.

I’ve done a lot of freewriting about my mother. I write about my mother to help me deal with the situation. At this point she has to go into assisted living. I have to find the right place, hope she likes it, clear out her condo, deal with the financial arrangements. When I think of the whole thing … I feel a weight pushing down on me.

Yesterday I visited my mother, and she made a funny comment that was really apropos to what was going on. Writing about those moments helps you deal with the situation in pieces rather than as this whole crushing weight. I’ve never done any psychoanalysis or worked with psychologists, but I know people who have, and they were told to write about things. Now I understand why. When you write about things, you can deal with things in layers, even create good memories.

To me writing is very similar to the visualization they do with athletes. The writing helps you focus on what you need to focus on.

When I write, I generally like to write by myself. But I also like writing with others. You can find a lot of inspiration in a class or a writing group. Sometimes you might not know if someone in the group is at a bad point with something you’re writing about and want to share with the group, so you might be a little reluctant to bring that out. But I don’t dwell on that, and I go with what comes up.

People can be afraid of their emotions, but again, people aren’t coming to dump, to be sad, they’re coming to support each other. There will be laughter and there’ll be a lot of bravery—this is how we get through it, how we stay focused on the goal and what we have to do today.

There’s something about being in a room of people with shared experience. This workshop, for instance isn’t going to be maudlin. It will be positive. I know this from being around different writing groups over the years. I don’t know anyone—even people who say they’re not writers—who didn’t walk away from a workshop or retreat and say, “This was so good for me.”

If you are interested in giving yourself the gift of sanity—the chance to make sense of your life, to write, alone and with others—consider attending the “Writing Workshop for Caregivers” on February 20, 2010, from 10 A.M. – 2 P.M. We’ll meet in the welcoming environs of the Fireplace Room in Hollin Hall, a lovely historic home on the grounds of Mt. Vernon Unitarian Church in Alexandria, VA. Or share this information with another caregiver, someone who may need or want a chance to write her story. For details, please email Joanne Glenn or call 703.721.2088.

Alzheimer’s Disease Educator: Nancy Dezan

Nancy Dezan at Positive Aging Fair

Nancy Dezan at Positive Aging Fair

I first heard Nancy Dezan speak about Alzheimer’s disease at the Positive Aging Fair in early fall. Her topic was “The Mind, Body & Spirit of Brain Health.” I heard her again speak on “Reducing Your Loss of Memory” at the Aging and Wellness Conference and Expo in McLean, Va, about a month later. Nancy is the dynamic Executive Director of the Alzheimer’s Family Day Center, the only adult day center in Northern Virginia devoted completely to the care of Alzheimer’s clients. She is an Alzheimer’s disease educator with an extensive background in Alzheimer’s and an excellent public speaker.

In her speeches, she assured us that forgetting a person’s name soon after being introduced is not a “senior” problem; it’s a problem of not concentrating. In normal aging, everything slows down; cognitive ability slows down around 40.

If you lost your keys every day, that is not necessarily a red flag. But if you don’t know what to do with the keys, that’s a red flag. Everyone with Alzheimer’s knows something is wrong and they feel vulnerable. Hence, they put keys in odd places like the freezer because they know that the keys are valuable, but since there’s no short-term memory, they can’t remember where or why they put it in the freezer.

She referred to the Nun Study which showed that nuns who were always exercising their brain fared the best, not necessarily those that were the most intelligent, because it sparked new neurons. She offered many tips on how to keep the brain healthy as well as the body. What is good for the normal person is good for one with Alzheimer’s as well. She mentioned four risk factors — blood pressure, cholesterol, obesity, and diabetes. High levels of stress can affect the brain and it is especially important for caregivers to reach out and ask for help.

In my next post, I will introduce you to the Alzheimer’s Family Day Care Center.

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