Dementia Q&A with Charles Fuschillo, President & CEO,
Alzheimer’s Foundation of America.
1. KIM – The Alzheimer’s Foundation of America (AFA) was originally founded by a consortium of organizations to fill a quality of care and service gap at the national level. Can you share more details with the readers about the evolution of your organization from its inception to present day?
CF – The Alzheimer’s Foundation of America (AFA) is a national non-profit organization that, today, unites more than 1,700 member organizations nationwide with the goal of providing optimal care and services to individuals confronting dementia, and to their caregivers and families.
AFA’s services include a toll-free hot line staffed by licensed social workers, educational materials, a free quarterly magazine for caregivers, and professional training.
In addition, AFA hosts educational conferences and telephone-based support groups and makes policy recommendations at the national level.
2. KIM – Although there are 15+ million family caregivers in the U.S.; supportive services and resources are not readily available to them on a national level. Historically, the primary fundraising focus has been on research. The AFA makes it a point to recognize caregiving needs. (Thank You!) Please share the top 3 initiatives your organization has either developed or features, that directly impacts and supports Dementia care partners.
CF –National Memory Screening Day – this initiative, which takes place each November, during National Alzheimer’s Awareness Month, is designed to educate people about memory concerns and early detection.Each year, on National Memory Screening Day, thousands of sites across the country offer free, confidential memory screenings that are administered by qualified health care professionals. While the results of the screening are not a diagnosis, they can signal whether someone should see their physician for a more thorough evaluation.
Early detection of Alzheimer’s disease can afford an individual an opportunity to participate in clinical trials as well as take part in long-term care and financial planning, which can alleviate some of the burden on the caregiver down the line.
- Grants for Caregiver relief – each year, the Alzheimer’s Foundation of America awards tens of thousands of dollars in grant monies to its member organizations specifically for the purpose of providing respite care.Respite care includes services such as adult day programs, which help caregivers by giving them a time-out from their caregiving duties, during which they can attend a support group, read a book, work or spend time with friends. Studies have shown that such time-outs can help delay costly nursing home placement.
- Support Groups – support groups can be invaluable to caregivers. They offer a forum in which caregivers can learn coping strategies and techniques, vent frustrations and interact with others in similar situations who “get it.”
AFA offers a variety of virtual support groups—by telephone and sometimes Skype—allowing caregivers to call in from the privacy of their own home or office. These sessions are facilitated by AFA’s licensed social workers.
AFA has facilitated support groups for spousal caregivers, including a group for people who care for someone with young-onset Alzheimer’s; a grief support group; a group specific to teen caregivers; and one for adult children whose parents have Alzheimer’s disease, to name a few.
And for professional caregivers… Dementia Care Professionals of America (DCPA) – recognizing a critical need for dementia-specific training in healthcare professionals, AFA formed its Dementia Care Professionals of America division in 2004.
DCPA seeks to raise the bar on dementia care in the U.S. by providing practical training to healthcare professionals, keeping professionals abreast of emerging breakthroughs in treatment and care, setting standards of excellence through AFA’s rigorous qualification program, and offering networking and advocacy opportunities.
3. KIM – Mr. Fuschillo, you became the organizations new CEO in January 2014 after serving 16 years as a State Senator from the 8th district of Long Island, NY; share with the readers how your political service can/may benefit the AFA’s long term goals and organizational growth.
CF – My legislative background complements The Alzheimer’s Foundation of America has long-standing advocacy for funding needed to combat this disease, which currently affects more than 5 million Americans. Among AFA’s advocacy efforts, the Foundation contributed recommendations to the historic National Plan to Address Alzheimer’s disease and continues to work with federal leaders to achieve the goals of the National Plan, including:
- Provide a unified primary care core curriculum to rectify an untrained dementia workforce
- Educate and support families upon diagnosis
- Create models of hospital safety
- Provide access to long-term care services for younger people, including individuals with Down syndrome
- Monitor, report and reduce inappropriate use of anti-psychotic drugs
Among my immediate goals are to increase awareness of AFA and its mission and to expand AFA’s member base to provide services and supports to an even greater number of people.
4. KIM – Another noticeable difference between the AFA and other national Alzheimer’s/Dementia groups – is your commitment to young caregivers. Explain the AFA Teen initiative.
CF – As the number of individuals with dementia continues to grow, we are increasingly seeing teens and college students thrust into the role of caregiver. Those years can be challenging for anyone, and are made more so by the added responsibilities caregiving brings.
Our Young Leaders of AFA program was founded by a teenager in 2002, then called AFA Teens, to help raise awareness of Alzheimer’s disease nationwide and engage teens in the cause. The program gives high school and college students an opportunity to form chapters and advocate and educate their peers.
Each year, AFA awards college scholarships via a competitive essay competition, to high school seniors. Their stories truly tug at the heartstrings. You can read them here: http://www.youngleadersofafa.org/about_new.html
We are also working on a larger, college campus program—The Raise Your Voice for Care tour—and will be revealing details on that in the coming months.
5. KIM – Would you agree that the breast cancer advocates have found a way to raise awareness for their cause in remarkable ways? In your opinion, what do Dementia advocates and organizations like the AFA need to do to shape the conversation and similarly raise awareness while squashing the social stigma currently attached to Dementia?
CF – As with heart disease and cancer in the past, we have to move Alzheimer’s disease to the forefront of the conversation, educating people on prevention, early detection and more. Our nation has made great strides toward this in recent years, but much more needs to be done.
It is only through education and awareness that we can hope to banish the stigma and fear associated with this disease.
THANK YOU! Charles Fuschillo, CEO, Alzheimer’s Foundation of America! (AFA) http://www.alzfdn.org/