JOAN’S BLOG – MON/TUE, JUNE 1-2, 2009 – LESSONS FROM THE 2009 EDUCATIONAL CAREGIVER CONFERENCE – PART I

The Alzheimer’s Community Care 2009 Educational Caregiver Conference was two whirlwind days of informational speakers and educational break out sessions on caregiving issues ranging from stress management, scientific advances in treating Alzheimer’s Disease to brain activities for the dementia patient. The schedule allowed for us to attend 3 different break-out sessions during the two day period. However, there were 28 topics from which to select. I will report on the 3 sessions I attended, and will give you the titles and presenter names of the others for you to research if you choose to do so. There is so much information to report that I am dividing this blog into two parts. It is also my practice, after attending these events, to whittle down the extraneous, and choose two or three main themes from the conference to share with you, which I shall do at the end of each blog.

Mood and Behavioral Disturbances Associated with Dementia by Marc. E. Agronin, MD
For those of you who have been following my blogs, you are fully aware of why I chose to attend this session. I wanted to learn more about why my husband experiences severe mood changes and “behavioral disturbances” , which is a polite way of describing ranting, raving rages and temper tantrums. (Which the medications have calmed, but have not eliminated the underlying anger and depression, which, rather than screaming at me, now find their way out in subtle verbal abuse).

Dr. Agronin’s statistics – that 80% of dementia patients will become agitated, and 50% will display psychotic symptoms, validated my belief that I am not crazy, and that my husband’s behavior IS definitely related to the disease, rather than a drastic flaw in my caregiving skills, Whew! That made me feel better.

When the frontal lobe is affected, either in Frontal Lobe Dementia or Alzheimer’s Disease, the behaviors can include verbal aggression, agitation, lack of impulse control, hypersexuality, physical aggression, wandering, and pacing. In my own husband’s case, I have been insisting that the AD is affecting the frontal lobe of Sid's brain because of the verbal aggression, agitation in unfamiliar situations, and diminished impulse control. Thank you, Dr. Agronin, for a second round of validation.

The psychotic symptoms in Alzheimer’s Disease can be hallucinations, delusions, misidentification, paranoia, which peak in the middle stages of the disease. For those of you who have questioned these symptoms in your spouses – they are a “normal” part of the disease.

However, Dr. Agronin did emphasize that possible medical causes or medication reactions should be researched first, as possible causes of symptoms. Infections, UTI’s, pain, or environmental stress may be at the root of the behavior problems.

Adverse reactions to medications such as anticholinergics, anti Parkinson’s, corticosteroids, antihistamines, stimulants, chemotherapy, anticonvulsants, and antidepressants, could cause behavioral symptoms.

The best practice course of treatment should be:

1. Address possible medical reasons first, as they can be reversed with treatment of the underlying medical condition or change in medication.
2. Try behavioral strategies to address environmental causes.
3. Medications if none of the above are effective.

He emphasized that the doctors should LISTEN TO THE CAREGIVER, because the caregiver knows the patient’s personality, routines, and behavior better than anyone. THANK YOU, Dr. Agronin, for that advice. We know that. It is comforting to hear a physician agree with us.

STRESS, DEPRESSION, AND THE ALZHEIMER CAREGIVER by Elayne Forgie, CMC, CDP – professional geriatric care manager and certified health and wellness coach specializing in Alzheimer’s Disease, dementia, and other memory impairments.

I chose this session, not because I needed to find out if I was stressed (That’s a given!), but because I wanted to meet and hear Elayne speak. Last week, I had posted two of her videos:7 Important Tips for Caregivers and 7 Stimulating Activities for Alzheimer Patients on my home page, and was quite impressed with her.

The first thing we did was fill out a stress/depression caregiver questionnaire. Oh joy. I found out that either I was the most stressed person in the room or the others who scored as high as I did were too embarrassed to raise their hands. You are all aware of the statistics on caregiver stress, so I will not bore you with those numbers.

Just in case you are not aware of the warning signs and effects of stress, you can check off the ones that apply to you, and find out if you are as bad off as I am:

Warning Signs of Stress:
Denial
Anger
Exhaustion
Sleeplessness
Lack of Concentration/cognitive impairment
Health Problems
Social Withdrawal
Weight Problems/Emotional Eating
Anxiety
Feeling overwhelmed
Psychosomatic illness
Obsessing about stress

Physical Effects of Stress:
Heart disease
High blood pressure and stroke
Weight gain
Headache
Loss of Appetite

Treatment for Stress and Depression
Medicine
Talk Therapy
Psychosocial support
Participation in enjoyable activities

Although most of us have heard all of this before, I thought that Elayne’s one most valuable tip was that THE KEY TO MANAGING STRESS IS TO START SMALL, STAY FOCUSED, AND BUILD FROM THERE. We cannot join a support group, take dance lessons, participate in psychological therapy, adhere to a strict diet, and exercise daily all at once. It is impossible. Choose one. Stay focused on practicing it one day at a time. My suggestion would be to start by finding a good support systemand get involved in it. But you know yourself best. Maybe you would be happier taking a dance, art, quilting, tennis, golf, or yoga class once a week. It doesn’t matter. Do ONE THING to reduce your stress and stick with it. You can expand your choices later.

Let me leave you today with one of the themes of the conference. To my surprise, almost every speaker emphasized something we have discussed on the message boards at length – DEMENTIA TRAINING FOR MEDICAL PERSONNEL. I found it quite interesting that they echoed our concerns – primary care physicians, all other doctors our loved ones visit, nurses, medical assistants, and hospital staff, all need training in not only dealing with dementia patients, but LISTENING TO CAREGIVERS. The caregiver is the expert on their loved one. LISTEN TO US, rather than make a snap judgment from one 15 minute visit.

Tune in tomorrow for Part II – A Journey through Alzheimer’s Disease with her husband by Sally Moore, using your caregiving strengths to help yourselves and others by Dr. Teena Cahill, more themes from the conference, a list of conference speakers and resources, AND our weekend party, including “leaving the guys by themselves”, and Joan letting her hair down for some wine and FUN.

So sorry – I left my camera on the table at the conference, so unless some Good Samaritan turns it in, no conference pictures until I get them from my friend.

MESSAGE BOARD TOPIC: Joan's Monday Blog - 6/1/09

Feedback to joan@thealzheimerspouse.com

©Copyright 2009 Joan Gershman

The material included on this website contains general information intended as information only. This site is not intended to provide personal, professional, medical, or psychological advice, and should not be relied upon to govern behavior in any certain or particular circumstances. The opinions in the blogs are solely those of the owner of the website. The opinions on the message boards are not necessarily endorsed by the owner of this website, and are the opinions of those persons writing the messages. All material on this web site is for demonstration and informational purposes only.

The Alzheimer Spouse LLC 2009 All Rights Reserved