Thanks, Charles, for agreeing to this interview. As the foundation knows better than anyone, Alzheimer’s disease touches so many lives, which is why we have written about it before and are thankful for the chance again. Let’s start with some statistics. How many people in Rhode Island are living with Alzheimer’s?
More than 24,000 Rhode Islanders are living with Alzheimer’s disease, according to the Rhode Island Department of Health. The department projects that number to rise in the years ahead, given the state’s aging population.
Under the status quo, are those numbers expected to rise?
In the absence of a cure, the number of individuals diagnosed with Alzheimer’s is expected to grow significantly, both in Rhode Island and across the country. More than 7 million Americans live with Alzheimer’s disease right now, and the Centers for Disease Control and Prevention (CDC) estimates that number could grow to nearly 14 million by 2060. Alzheimer’s remains a growing public health crisis, locally and nationally.
Many caregivers — family members and friends — also are affected, of course. Can you please give us an overview of that?
More than 36,000 Rhode Islanders care for someone living with Alzheimer’s disease, according to the Rhode Island Department of Health. Caring for a loved one with Alzheimer’s disease is a true labor of love, but one that also comes with challenges, such as physical, mental, emotional, and financial stress. Dementia caregiving can be especially challenging because the disease affects cognitive function, memory, behavior, and independence. As a result, caregivers of people with dementia face higher risks of anxiety, depression, burnout, and declining quality of life.
Few, if any, family caregivers are prepared and trained for their roles before Alzheimer’s enters their lives, which is why help, support, and education are vital. Across the country, millions of caregivers quietly shoulder enormous emotional, physical, and financial responsibilities—often with little training or support.
The most important thing for Alzheimer’s family caregivers to know is that they need to have support, because doing it entirely on your own is impossible. The Alzheimer’s Foundation of America (AFA) offers numerous free caregiver support resources, including a Helpline staffed by licensed social workers that is available by phone (866-232-8484), text message (646-586-5283), and webchat (alzfdn.org) seven days a week. We’re also bringing our Educating Across America Tour to Rhode Island on June 17.
There is significant research underway into the causes, prevention, treatments and cure of Alzheimer’s. Let’s hear a summary of each area, starting with causes.
Promising research is underway and bringing us closer to the breakthrough that can’t come soon enough. AFA has awarded millions of dollars in research grants to institutions such as the Broad Institute of MIT & Harvard/One Mind; NYU Langone Hospital-Long Island; Emory University; Feinstein Institutes for Medical Research; and Stony Brook University. We will continue to make these investments in hope through the generous support of individuals and organizations. 100 percent of all donations designated for research go towards funding scientific projects. Those wishing to support these efforts can visit alzfdn.org/donate.
One of the most heartening developments on the research front is that the federal government has worked in a bipartisan manner to significantly increase federal funding for Alzheimer’s research at the National Institutes of Health (NIH). Federal funding for Alzheimer’s research was approximately $500 million a year in 2012. Today, it’s nearly $4 billion, and that is a credit to Republicans and Democrats coming together to make progress. That progress is tremendous, but Washington must continue building on it until we reach the only true finish line; finding a cure.
There is an Alzheimer’s educational conference scheduled for June 17th in Providence. It’s free. Where is it being held and who can come?
The free AFA Alzheimer’s & Caregiving Conference is open to everyone and takes place at the Omni Providence Hotel (One West Exchange Street, Providence) from 10 am – 1 pm. Individuals wishing to take part can sign up by visiting alzfdn.org/tour.
In a recent press release, the Alzheimer’s Foundation of America, which is sponsoring the June 17th event, wrote that the day “will feature top local experts in Rhode Island who will be providing valuable information on everything from caregiver strategies to early detection, clinical trials, healthy aging, maintaining independence, building a care plan, local resources, and more. In fact, many of those local resources will be in attendance.” Can you give us a bit more detail please?
The conference will allow participants to learn from experts in the field of Alzheimer’s disease, brain health, and caregiving.
Dr. Bess Frost will provide a general overview of Alzheimer’s disease; how it affects the brain; warning signs and symptoms; and the progression that individuals may experience. She will discuss current, ongoing research; available treatments; and the critical role which clinical trials play in advancing our understanding of the disease, developing new therapies, and improving care for those impacted by the disease.
Dr. Frost is the Salame-Feraud Director at the Center for Alzheimer’s Disease Research at Brown University. She is also a Professor of Molecular Biology, Cell Biology and Biochemistry.
Laurie Gunter Mantz, OTR, CADDCT, CDP, CFRDCT, CMDCP, will offer practical, real-world guidance to help caregivers create supportive environments and learn how to balance autonomy with appropriate supervision as symptoms change over time.
Laurie is the founder and CEO of Dementia Training for Life, LLC, as well as a registered and licensed occupational therapist, educator, and certified dementia care practitioner and trainer. Laurie also has personal ties to the disease, as both of her grandmothers passed away from complications due to dementia.
Katie Brandt, MM, will introduce an innovative person-centered care planning approach that incorporates the person with the diagnosis, their care partners, and their community as the anchor for each element of care. She will guide attendees on the steps they can take to build a care plan that reflects values, goals of care, personhood, and dignity at every stage of life lived with dementia.
Katie is an advocate, educator, and caregiver for her father and husband, both of whom were diagnosed with dementia-related illnesses. As Director of Caregiver Support Services and Public Relations for the Massachusetts General Hospital Frontotemporal Disorders (FTD) Unit, she provides leadership for research, education and community events aimed at supporting the caregiver experience for families affected by Alzheimer’s disease, frontotemporal disorders and young-onset dementias.
In addition, there will be other local resources in attendance, handing out information and telling attendees about the services they provide. Register for the free conference by visiting alzfdn.org/tour.
The AFA Helpline: Speak with a licensed social worker 7 days/week, 9am – 9pm ET Phone: (866) 232-8484, Text: (646) 586-528
