Alzheimer’s disease (AD) is the most common form of dementia – a disease that affects adults older than 65 and causes the death of nerve cells in the brain. A person with AD loses memory and the ability to complete everyday tasks. As the number of older American grows, so does the prevalence of the disease. Currently, there are 5 million people living with AD in the United States. By 2050, that number is expected to triple.

People caring for AD patients may have several challenges, including:

• Communicating and coping with changes in the patient’s personality
• Other conditions that affect the elderly such as slip-and-fall injuries that may require hip replacement surgery
• Heart troubles
• Diabetes

On top of this, these are several medications for treating AD that have varying levels of effectiveness and safety. Symptoms like depression, psychosis and apathy may be treated with additional drugs that also carry a host of side effects and may interact with AD medications.

Caregivers should know what to look out for when it comes to these medications because some can cause serious harm.

Types of Medications Used to Treat Alzheimer’s

In the United States, there are two classes of U.S. Food and Drug Administration (FDA)-approved drugs for the treatment of AD: cholinesterase inhibitors and N-methyl-D-aspartate (NMDA) receptor antagonists. These drugs are fairly expensive and have not been found to be very effective.

Cholinesterase inhibitors work by preventing the breakdown of a chemical responsible for thought, learning and memory called acetylcholine. These drugs are recommended for mild to moderate cases of AD.

Some drugs in this category are:

• Aricept
• Exelon
• Razadyne

Aricept in particular has come under fire from consumer advocate groups like Public Citizen because of its lack of effectiveness and severe side effects at higher doses, including dizziness, agitation and gastrointestinal problems. Vomiting is also a severe side effect and can lead to pneumonia, bleeding and even death.

The only N-methyl-D-aspartate (NDMA) receptor antagonist that is FDA approved is Namenda, which treats moderate to severe AD. This drug works by blocking NDMA receptors, preventing the release of amino acids that kill nerve cells. It can also be prescribed in combination with Aricept.

Common side effects of these drugs are dizziness, drowsiness and fainting – conditions that may heighten the risk of injuries from falls. If more than one of these drugs is prescribed, side effects could be worse.

Other Drugs Prescribed to AD Patients

There are a number of other symptoms AD patients may suffer from, such as depression, apathy and psychosis. These symptoms may be treated with additional drugs, including:

• SSRIs. For depression, doctors typically prescribe antidepressants known as selective serotonin reuptake inhibitors (SSRIs). While SSRIs like Zoloft are linked to birth defects when taken during pregnancy, older patients with AD may experience nausea, weight loss or gain, dizziness or agitation.
• Stimulants. Apathy is another common symptom of AD. To treat this, doctors may prescribe a stimulant such as Ritalin. This drug can cause high blood pressure, severe insomnia and psychotic symptoms. It is also addictive. This medication is especially risky for adults older than 65, and a caregiver may wish to inquire about an alternative.
• Antipsychotics. Some AD patients suffer from hallucinations or aggressive behavior, and antipsychotics are used to treat these symptoms. A study published in the May 2009 issue of Lancet Neurology revealed that these drugs are not much more effective at controlling these episodes than placebo, however. Also, they may double the risk of death, and serious side effects such as Parkinsonian-like symptoms can also develop. Before prescribing antipsychotic medications, many doctors recommend behavioral treatments such as controlling the patient’s environment and routine.

Non-Pharmaceutical Options

There is no cure for AD, but there are a few alternatives to medications for easing some symptoms:

• Keep a routine and avoid unfamiliar places.
• Always be aware of tone and body language when communicating with an AD patient, and try to use gentle touch to communicate if verbal communication is not working.
• Use distractions such as music, dancing or singing to stop disruptive behaviors.
• Take time out for yourself if you are getting frustrated.
• Always let the patient know he or she is safe.
• Keep extra sets of things patients may lose, such as glasses or keys.
• Try not to argue with the patient.

As always, when making any decision about a patient’s care or medications, work hand-in-hand with the patient’s physician.

Bio: Michelle Y. Llamas is a writer and researcher for Drugwatch.com and the host of Drugwatch Radio. She has written for medical journals and been a guest on podcasts focused on health

Sources:

National Institutes of Health. (2013). Methylphenidate. Retrieved from www.nlm.nih.gov/medlineplus/druginfo/meds/a682188.html

New York Times. (2012). Alzheimer’s disease medications. New York Times. Retrieved from http://health.nytimes.com/health/guides/disease/alzheimers-disease/medications.html

Consumers Union of United States. (2013, January 7). Alzheimer’s drugs are expensive, and they don’t work very well for most people. Washington Post. Retrieved from http://articles.washingtonpost.com/2013-01-07/national/36188995_1_drugs-generics-seroquel

National Institute on Aging. (2012). Caring for a person with Alzheimer’s disease. Retrieved from http://www.nia.nih.gov/alzheimers/publication/caring-person-ad/understanding-how-ad-changes-people-challenges-and-coping

BETH REINERT – GUEST OPINION

Advocate seeks to change perception of dementia

Have you ever been asked the question, “Who would you most want to have dinner with?” My answer is Teepa Snow, an award-winning occupational therapist who has made it her mission to help family and professional caregivers do a better job of caring for people with dementia.

Snow is a mentor and voice of confidence for the millions living with the disease. I have learned from her teachings to better understand how to help my mom live with dementia.

I caught up with Snow recently in Mobile while she was there for a speaking engagement. We chatted for several hours about our shared focus: advocating for men and women who have dementia.

Dementia is an umbrella term that covers 70 to 80 conditions of brain failure. A dementia diagnosis is lifealtering for not only the person living with the disease, but also for the person’s family.

More than 50 percent of diagnosed types of dementia are Alzheimer’s cases, but often a secondary dementia emerges as the disease progresses.

Alzheimer’s disease is the sixth-leading cause of death in the U.S. No pill will take this problem away, so the key to a positive outcome is how caregivers manage our actions, words and reactions.

Snow has a message not only for families and care professionals, but also for all of society. “Policemen, firefighters, emergency room workers, postal service and bank employees all need to be familiar with the signs of dementia.” she said.

“We as a society must have a basic awareness of dementia and embrace people living with dementia instead of labeling them as demented people.”

Snow wants to change the perception of how dementia is viewed, take away the negative terminology and create the right setting and care for men and women with dementia.

At risk herself

Snow’s popularity took off in the late ‘90s after she presented a staff training model at the International Alzheimer Meeting in Washington, D.C. Her DVD, “Accepting the Challenge,” has been widely distributed. She is the most prominent educator for training on all aspects of Alzheimer’s disease care. That is why her calendar is booked through 2015.

Snow also has a history of dementia on both her mother’s side and father’s side of the family.

She knows she is at risk for developing the disease, so she is living life carefully by making good choices. She keeps physically fit, manages stress with yoga and deep breathing, and eats well.

Snow’s website, teepasnow. com, is full of information that both professional and family caregivers should see.

Free webinars can be accessed from her Dementia Care Academy, and DVDs are available for purchase. Not everyone can attend her workshops, but anyone with Internet access can learn from her teachings.

With the coming tide of senior baby boomers on the horizon, everyone needs to know about dementia. We should all get to know what Snow has to say about it.

Beth Reinert advocates for people living with Alzheimer’s disease. She authors the blog Caregiversunite.org, which includes general news and advice for families coping with the disease, along with event listings for the south Alabama area.

Printed in AL.com, Press-Register, September 18, 2013, page 10A

Mobile Infirmary’s E.A. Roberts Alzheimer’s Center is managed by Laura Harrington.  She is a Board Certified Gerontolgical Nurse.  Aside from her very capable credentials, she is one of the nicest people I know.  She has a knack for making people feel valued and cared for.  I always feel better just being in her presence.  I have seen her show such care and concern for the weary caregiver.  If you have a loved one with Alzheimer’s Disease, you may want to visit the E.A.Roberts Alzheimer’s Center, see the facility and learn about their Adult Day Care program.  Who knows, you may get to meet Laura.  You and your loved one will be glad you did.

You are a purple angel, Laura, for all the years and care you’ve given to helping those with Alzheimer’s Disease and their loved ones.

I was distressed to witness the video report of elder abuse in nursing homes Friday night on the CBS news.  Families for Better Care Advocacy Group did a survey on nursing homes by state and have produced a report card for access on their website.  If you want to see how your state fares in nursing home care, go to Families For Better Care and search for your state.

To see the news story, go to CBSnews.com.

I follow this group on Facebook and have downloaded their brochure as follows:

If you or a loved one suffers from Alzheimer’s, Early Onset Alzheimer’s, or another Dementia related disease, if you are an advocate, or want to know more about these diseases, we invite you to join us. Memory People™ is a Facebook group founded by Rick Phelps who was diagnosed with Early Onset Alzheimer’s Disease June of 2010. Rick saw the need for real time interaction for all those touched by these diseases. At Memory People™ you will find care and support in a comfortable and safe environment where patients, caregivers, and all involved come together to share our stories, support each other, and bring awareness to these diseases. First, you will need to have a Facebook account to join us. From your Facebook home page type Memory People into the search bar. Then click on Memory People, and you will be taken to our home page where you can read about our group. Then, just click on the “Join Group” button and one of our Administrators will add you. If you or a loved one have been touched by Alzheimer’s or another Dementia related disease we encourage you to join us at Memory People™.
bringing Awareness, one person at a time
Rick Phelps
Founder, Memory People
Cell 740-294-2456
phelps2645@gmail.com
Leeanne Chames
Personal Assistant to Rick Phelps
Executive Director, Memory People
leeannechames@gmail.com

The mission of the Alabama Lifespan Respite Resource Network (Alabama Respite) is to lighten the burden on caregivers, by making caregiver supports more readily available in Alabama.

A caregiver is anyone who provides care for a person with a disability or chronic illness.  There are an estimated 850,000 caregivers in the state of Alabama providing care for a loved one in their home.  Providing this care, while rewarding, can often be physically, mentally, and spiritually taxing.

If you have a faith based community that would like to investigate how to provide some type respite for caregivers, go to alabamarespite.org and find out all the many ways a group can help.  They will go the extra mile to enable you to provide this valuable service. Or call Anna Hines-Capron at (256) 859-4900 or e-mail to annastc@ucphuntsville.org for more information.

Ministry leaders and church representatives can also help Alabama Respite staff learn what types of assistance may be the most useful by completing a quick survey at this link https://www.surveymonkey.com/s/52SQF8F.

Available respite resources are also listed on the website.  Learn about this caring network and benefit from their expertise.  The link to the website is found at the top of the blog.

PBS reports a special investigation on the Assisted Living industry.  If you miss the program on television, go to PBS.org and watch the full program entitled,”Life and Death in Assisted Living” at your convenience.  It’s a must see.

Since I have become a caregiver, I enjoy reading anything to do with Alzheimer’s Disease especially personal stories from people who have walked the journey alongside their loved one. The theme of my last three books addresses the approach taken when dealing with a person with dementia and how to engage them in meaningful activities to maintain qualify of life and make life manageable for the caregiver.

Virginia Bell and David Troxel are in their fourth printing of “The Best Friends Approach to Alzheimer’s Care”.   The Best Friends Approach is designed to create empathy from the carer point of view in order to understand how best to communicate with their loved one living with dementia.  They  have coined the term “knack” to refer in caregiving as a clever trick or stratagem or the ability and skill to do something easily.  Some individuals are simply born with knack; their personality and sensibility help them to be wonderful caregivers.  The Best Friends model can teach the abilities and skills of knack and along the way offer many clever tricks in the “dos and don’ts of Alzheimer’s care.  This is a worthwhile book and is only one of several written by these authors.

Hot off the press is Tom and Karen Brenner’s new book,” You Say Goodbye and We Say Hello: the Montessori Method for Positive Dementia Care”.   Incorporating songs from the Beatles as each chapter title, this easy read has a  clever appeal to the targeted baby boomers providing care.  Granted that dementia care is  an overwhelming task, they have broken down their personal experiences as a gerontologist and a Montessori teacher to  share their findings labeled “Guideposts” throughout their story.  They weave innovative and doable activities throughout the book and leave both professional and family caregivers with a renewed hope for creating a positive environment to deepen the connection with the people they love and care for.

Finally, having to wait longer than expected to receive this book in the mail, “Contented Dementia” traveled across the pond from England to find its way to me. Author  Oliver James lives in Oxfordshire and is trained as a clinical child psychologist and is a trustee of the Alzheimer’s charity, SPECAL.  An open letter from the inventor of the prescribed method in this book tells the reader if they have dementia and are reading the letter, not to worry about the future, appoint a person they trust as their advocate and have them read the book, then forget all about the diagnosis and get on with enjoying their life.  The rest of the book goes into great detail on how to use the person’s history to help create a life living in the present with memories from the past.  Penelope Garner developed the SPECAL Technique after caring for her own mother followed by years of observation and research with other clients. Get ready to do your homework as you read so that you will develop a customized world where your caree lives contently. For more information, go to Contented Dementia Trust.

All three of these books are similar.   Each stresses the importance of knowing the history, preferences and interests of someone with dementia and not to argue with but learn how to navigate away from unwanted negative behaviors associated with dementia.  Once these methods are perfected, consistency with all carers involved is required for optimum outcome.  All are worth reading.  We have a long way to go to get everyone on the same page with caregiving techniques.  May it begin with us – the ones who care the most.

An activity I’ve discovered that my mom and I can enjoy is the card game of solitaire.  Although the name of the game would suggest a solitary player we’ve teamed up to play separate parts to reach the goal of the game.

Originally, we played solitaire as an afternoon diversion in Momma’s assisted living apartment.  As time has gone by, it has also become a tool for me to gauge her state of being.  Since she has stopped talking, I read her body language to determine how she is feeling, i.e., does she have a urinary tract infection that needs to be treated.  The way she plays cards says it all.

Whether we are seated side by side at a table or we have a table between us, I initiate the game after we have accomplished the daily ritual of cleaning her teeth, hands, and fingernails, which I follow by rubbing lotion onto her arms and hands.  Now I know her hands are clean and how well she cooperated tells me if we can proceed with card playing.

Some days, her answer is no to the suggestion of cards.  However, I may go ahead and deal out the cards in front of her and see if I can engage her interest.  I count out the seven cards out loud, over and over, each set of seven, until the game is set.  We look over the hand that we’ve been dealt and see if any cards can be played.  I play those cards, naming what I’ve done like the red six goes on the black seven, until  we’ve played all we can,  Then I set the remaining deck in front of her on the table and see if she’ll pick them up.  Here’s when I need to wait for her to make a decision.  She may eventually reach for the cards to begin the game. I may offer the deck to her and she may accept them.    If not, I pick them up and count out the first three cards to lay face up.  I go on like this until she decides to join in. When the game calls for a card to be turned over, I tap my finger on the card as a queue for her to do so.   If she has become interested in the game, she will comply.

I have found that the longer we play, the more engaged she becomes.  We may play multiple games, hoping to finally win and when we do, I celebrate with a lot of cheering.  This generally elicits a chuckle or smile from her at our success. Eventually, with repetition, she may even initiate laying out the beginning cards, which is quite an accomplishment compared to where we started.

This time we spend together has become not only a diversion and a communication tool, but also a philosophical attitude. Although the game of life is often played alone, we’ve teamed up to play the hand we’ve been dealt together.