Among those who told their own stories at the Sixth Annual Early Stage Memory Disorders Forum, a positive attitude was a characteristic shared by all. Memories might be fading, but the glass is definitely half full. The audience at this interactive symposium would learn much about communicating with those living with progressive memory loss, and about how far respect goes in maintaining one’s dignity and autonomy.

After a welcome by Susan V. Kayser, Board Co-Chair, Alzheimer’s Association, NYC Chapter President and CEO Lou-Ellen Barkan noted that creative arts provide a way for early stage persons to share their experience.

And Dr. William Deutsch, a member of the early stage support group since its inception, spoke of those meetings as a lifeline, together with the encouragement of family and friends.

Our keynote speaker was Tony and Emmy award-winning actor Ken Howard, remembered for his starring role in TV’s The White Shadow. He recalled working with Charlton Heston on The Colby’s, long before that actor developed Alzheimer’s.

Mr. Howard talked about his father, who had been showing symptoms of AD. In 1990, he needed prostate surgery, which his son thought of as “a blessing in disguise, because doctors would notice his confusion.” Visiting him in a care facility, Mr. Howard saw him as “distracted, disoriented and finally, lost….yet there were glimpses of wit.” He concluded that one should “continue to keep up a dialogue with the person who’s slipping away for your own benefit, not only theirs.” Conference coordinator Susan Goldfein then set the stage for To Whom I May Concern, a dramatic presentation of four people getting a diagnosis of Alzheimer’s who express their feelings in a series of letters. Robert Seaver faces the fear of the unknown with a sense of humor and hopes for honesty.

He finds he’s still interested in politics, the future of the country and the world. Margaret Henighan, a retired nurse, is in the sandwich generation—her mother has late stage AD. “Who am I going to be in six months,” she wonders. “I’m still very much a part of the world—and I’m not contagious.”

Richard Hansen says that his shyness has given way to sharing thoughts and feelings. John Carpenter asks if strangers see the missing pieces. It is a challenge not to get lost, especially on the subway. “I don’t want dementia to define me,” he declares . “I’m more than a memory.” The text came from early stage interviews and was shaped by Maureen Matthews, Ph.D., and directed by Lauren Volkmer, of Artists for Alzheimer’s.

Forum participants then broke up into workshops. A workshop on motivation and getting “unstuck” was facilitated by David Layman, Ph.D. Frank Carlino, diagnosed eight years ago, shared his coping strategies, including doing things you enjoyed, even if you can’t do them as well as you once did. Fill your life with activities, he advises. Many people get depressed because they think they’ll go quickly, but this is often not the case.

In Negotiating with your Care Partner (a workshop led by Tobi Abramson, Ph.D. and Natalie Post, an early stage person), many difficulties arise if the spouses were once equal, but now one is more dependent and may not willingly give up driving or wear an Alzheimer’s Association Safe Return® bracelet. Sometimes having these adjustments suggested by a doctor instead of the spouse can make for smoother transitions. The well spouse must realize that the resentment, suspicion and other personality changes reflect the disease; they aren’t willful acting up.

After a delicious informal lunch, with many exchanges of tips for coping, we reconvened for a medical session with Dr. Jeffrey N. Nichols of the Cabrini Eldercare Consortium. His topic was How People with Early Stage Memory Disorders Can Manage Their Own Health. First, he pointed out, any patient needs to insist on respect and the amount of the doctor’s time that they need. Dr. Nichols recommended writing down one’s questions and concerns before the visit. Also, take notes during the appointment.

Being in control of one’s own health also includes having advance directives in place. In New York, that includes appointing a health care proxy, which can be activated until fairly late in the course of AD. With a disease that goes on for 10-25 years, something else is often the actual cause of death—another disease that progresses more quickly. Get flu shots and pneumonia vaccines, stay at the same weight, don’t use tobacco and use alcohol minimally. Adjust your surroundings to minimize the potential for accidents. And caregivers must make an effort to stay healthy even as they get more and more involved with caring for their loved one.

Attendees then chose another workshop, and later adjourned with a much more immediate sense of what persons with early stage memory disorders want and need.

Thanks to forum co-sponsors Ortho-McNeil Neurologics, Inc., the State of New York Department of Health and the Greater New Jersey Chapter of the Alzheimer’s Association.

—Chris MacLeod

Other Photos from the Forum
Please click here to view our Early Stage Forum album and other Chapter event photographs.
Welcome from Dr. William Deutsch, Early Stage Person & Member of the Early Stage Forum Planning Committee	Maureen Matthews, Lauren Volkmer & Susan Goldfein
Dr. Jefffrey N. Nichols presented the Medical Session, “Taking Care of Yourself: How People with Early Stage Memory Disorders Can Manage Their Own Health”	To Whom I May Concern: A play based on the stories of people with early stage dementia
The cast of “To Whom I May Concern” – John Carpenter, Margaret Henighan, our Story” Bob Seaver & Richard Hansen	Dr. Alan Dienstag facilitates the 2-part workshop “Telling Your Story”