The Alzheimer’s Association Making a Difference in the Lives of Those Living with Dementia
Dec 01, 2016 07:40AM
By Hilary Daninhirsch
The Walk to End Alzheimer’s Event
Alzheimer’s is a progressive form of cognitive dementia that affects millions of individuals and caregivers nationwide. While there is currently no cure, the Alzheimer’s Association is working tirelessly to fund research and provide support and resources to those impacted by the disease.
Gail Roddie-Hamlin is the president and CEO of the Greater Pennsylvania Chapter of the Alzheimer’s Association, which serves 59 counties, including Allegheny. In fact, the first-ever Alzheimer’s Caregiver’s Conference was held in Pittsburgh on November 4, focusing on “The Power of Support.”
North Hills Monthly Magazine (NHMM): What is Alzheimer’s, and what is the mission of the association?
Gail Roddie-Hamlin (Roddie-Hamlin): Alzheimer’s is the most prevalent form of dementia. It is mainly a decline in cognition and the ability to do things you would ordinarily do without any prompting or assistance as it relates to brain health.
Our vision is a world without Alzheimer’s, and we hope to achieve that through several strategies—primarily through advocacy and outreach; through programs and services to individuals and caregivers who are affected by the disease; and through research efforts—by funding and being an international player in that regard.
NHMM: How many people are living with Alzheimer’s?
Roddie-Hamlin: We know that there are over 5 million people impacted by Alzheimer’s nationwide. We know there are over 15 million caregivers who are caring for those individuals. In Pennsylvania, there are over 400,000 impacted by Alzheimer’s, with over 600,000 caregivers caring for them. We have an aging population in Pennsylvania, and having good services and programs for individuals who are impacted while research is being conducted is so very important.
NHMM: Does it affect people equally?
Roddie-Hamlin: While it can also be prevalent in younger individuals, mostly it is a disease seen in individuals who are 65 or older. Women are disproportionately affected by Alzheimer’s, as nearly two-thirds of those affected nationwide are women. It is a disease that is more progressive in African-American populations; some of this has to do with a delay in diagnosis, and that is why awareness—letting people know programs and services are available—is so important. Women tend to be more of the caretakers, so we are trying to get messages out about importance of early detection.
NHMM: What are the risk factors?
Roddie-Hamlin: We are trying to find out what is a contributing factor to this proliferation of Alzheimer’s. There is a lot of talk about beta amyloid, a protein in the brain that may be there before someone is diagnosed with Alzheimer’s.
There is some prevalence in families. Studies are being done to see why that is. We see that there is more of a proliferation of the disease now—maybe because people are getting in and seeing doctors. We also know that 50 percent of people are not being diagnosed. It is always important when people show cognitive impairment to check it out to make sure that it is not some form of dementia.
NHMM: In addition to studying the beta amyloid protein, is there any other research news?
Roddie-Hamlin: The association is a convener of international science around Alzheimer’s and dementia. We held an international conference in Canada recently and learned of studies that were looking at the potential of odor identification testing as well as physical changes in and around the eye that detect cognitive impairment and Alzheimer’s at an earlier stage.
NHMM: How is Alzheimer’s now diagnosed?
Roddie-Hamlin: Currently there is no single test that can prove a person has Alzheimer’s. Doctors make their diagnoses through a complete assessment of medical history, physical exams, neurological exams, mental status testing and brain imaging.
NHMM: Is it always progressive?
Roddie-Hamlin: It is generally a slow progression over time and although there is no cure for Alzheimer’s, there are medications that can temporarily slow the worsening of symptoms and improve quality of life. But ultimately, Alzheimer’s is a fatal disease with no cure.
NHMM: Does Alzheimer’s affect a person physically as well?
Roddie-Hamlin: Yes, the disease is the sixth leading cause of death in the U.S. and can affect those suffering in numerous ways. It can affect motor skills and ultimately lead to a person being unable to care for themselves. People can live a long time with this disease; it can take years for there to be a fatal impact. That is why caregivers are important to help the person navigate the challenges of living with Alzheimer’s.
NHMM: What are some of the services offered by the Alzheimer’s Association?
Roddie-Hamlin: One of the great things is that we have free services available—and one of the best is our 24/7 help line. There are trained social workers available anytime for someone who needs information or referral services. Our helpline number is 1-800-272-3900.
The association provides support groups, of which we have about 160 throughout our chapter. Those are usually small groups, individuals talking about their experiences, sharing resources, care providers, respite care, etc.
Every year we have a large conference for health professionals; this year, it will be held in Pittsburgh on December 1 at the Regional Learning Alliance in Cranberry. It will focus on living with Alzheimer’s and dementia and will feature research updates, discussions on ethics, aging issues, and trying to bring health professionals and caregivers together. Our advocacy and public policy programs are a big way for us to encourage individuals to take action—by keeping legislators informed, by talking about what they think is important in caregiving, what the standards of care in facilities should be, etc.
NHMM: What are some Alzheimer's Association events in Pittsburgh?
Roddie-Hamlin: The Walk to End Alzheimer’s is our signature event across the country and one of our primary sources of raising revenue for the cause. This year, we have 25 walks in the greater Pennsylvania chapter, and the Pittsburgh walk held October 15 was our largest; so far we’ve raised over $400,000. We are still accepting donations through December 31 at www.alz.org/pa.