By Ann Julian, LCSW-R, MSW
Special to Alzheimer's Weekly
Published Week of August 5 - August 11

The traditional American “town hall meeting” is becoming the forum of choice for discussions on how to meet the needs of people in the early stages of Alzheimer’s disease (AD).

Such a meeting, held by the Alzheimer’s Association this month in Oakland, California pulled more than 100 people – the majority of whom had already been diagnosed with AD, although a smaller group of caregivers and family members attended as well.

It was the first of a series of town hall meetings to be held around the country by the Alzheimer’s Association aimed at addressing the issues faced by people in the early stages of the disease.

Most of those who spoke up at the meeting, moderated by Stanford University Law Professor Dr. Hank Green, were AD victims, who shared their compensation techniques, triumphs and challenges in the forum.

One of the coping strategies that came up repeatedly was the importance of attending a support group, whether for the patient, the caregiver or the family member. 

Another came from a former elementary school principal who said he always carries with him a day planner so he can immediately write down things he needs to remember later – including basic items such as conversations with his wife.

Many of those who shared their experiences talked about the central role played by support groups when their friends became uncomfortable or no longer kept in touch. They shared their sadness over no longer being able to drive – but one woman shared her joy at having to give up a task she never enjoyed.

“I can’t cook anymore, thank G-d,” said Iris MacCarthy. “I never liked to cook anyway.” MacCarthy reminded her fellow Alzheimer’s victims that there is still much an AD person can do, and take joy in. “I can still read, and I can concentrate on people and music and books and all these things I love,” she said.

Family members talked about the frustration of trying to figure out whether their AD relative was joking in order to cover up a “memory moment” or was really just teasing them. 

They and their AD loved ones also talked about the insensitivity of some of the doctors they have had to deal with. “Please somebody, get those physicians slapped around and tell them this is not a way to treat a patient,” called out a woman whose doctor had practically run to his next patient after giving her the diagnosis.

Patients also talked about the humiliation they felt when they knew they had failed what they knew should have been a simple task on a diagnostic exam. Others, however, explained how to compensate for their memory loss. One man said he sometimes can’t remember his wife’s name – so he just calls her “sweetheart” instead.

Information about new medications and other treatments was exchanged, and ways to improve and maintain a satisfying quality of life were offered by family members and caregivers as well as the AD patients themselves.

“I still ask my dad for advice. I go to him when I need something,” said one woman. “He’s every bit the dad he’s always been.”

More Information:

To find out more about upcoming Town Hall Meetings or to register for one, click here.