Help for Alzheimer’s Patients and their Families

TrialMatch program helps pair patients and trials

TrialMatch, a service offered by the local chapter of the Alzheimer’s Association, can help patients and caregivers find appropriate clinical trials. “There are lots of trials out there, but they have specific criteria for inclusion,” said Lauren Young, LCSW, the association’s helpline coordinator. “It can get frustrating to figure out and we can help.”

Research, she said, is important not only to look for future cures and treatments for Alzheimer’s Disease, but also for discovering new ways to cope with the disease from the emotional and social perspectives. “Trials listed on TrialMatch are approved research studies that are ethical and government regulated to protect the safety of the patient to whatever extent that is required,” she explained. Another service provided by the Alzheimer’s Association is the 24-hour helpline at (800) 272-3900. “Caregivers and patients can call the helpline to explore whether participating in a clinical trial is a good fit for the patient, or to ask questions about the process of participating in clinical studies. We can provide publications about the process, as well,” she said.

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Earline Marion, who is being treated for Alzheimer’s Disease, has chosen to take part in a clinical trial testing out a new vaccine that appears to neutralize some of the toxic effects of the disease.

Premiere Research Institute at the Palm Beach Neurology Center in West Palm Beach and Palm Beach Neurological Center in Palm Beach Gardens conduct trials locally.

“And if we can’t find an appropriate trial, patients can get help at the memory disorders centers at either St. Mary’s Medical Center (West Palm Beach) or Florida Atlantic University (Boca Raton). They bring together neurology, psychiatry, nursing and social work to meet the needs of the patients and their families.”

The Alzheimer’s Association is a national organization that offers a myriad of programs. “Our chapter has the second largest call volume of all the association’s chapters in the country,” she said. “We offer supportive counseling, a 24-hour helpline, an identification program for patients who wander, in-depth community education, professional training, support groups and an annual conference.

“We also promote research. We are the second largest private funder of research internationally, after the U.S. Government.”

Subsidized caregiver support programs, such as daycare and homecare, are limited and have waiting lists, she said, while there are many good private programs available. “We advocate through public policy initiatives for enhancing programs for care services within our community.”

To find out about clinical trials through TrialMatch, go to www.alz.org and click on TrialMatch or call (800) 272-3900.

A Life After Diagnosis

Alzheimer’s Community Care is a not-for-profit organization founded in 1996 that serves Palm Beach, Martin and St. Lucie Counties and offers specialized care to Alzheimer’s Disease-and-related-disorders patients and their caregivers. Services include adult day service centers, family nurse consultants, 24-hour Alzheimer’s crisis line, support groups, case management, education, training and advocacy. The organization has eleven specialized Alzheimer’s adult day service programs and seven family nurse consultant offices in fifteen locations throughout the three counties.

Written for Palm2Jupiter