Weekly InSight: Support For Young Caregivers

Alzheimer’s disease is most commonly associated with the older adult population, but it can affect people in their 40s, 50s, and early 60s — referred to then as early-onset Alzheimer’s disease (EOAD). In younger populations, signs and symptoms of EOAD can be missed or explained away, a major risk as the progression of EOAD occurs at a faster rate than late-onset Alzheimer’s disease.

EOAD frequently affects people at work and can force an early retirement, causing financial strain on a family. One family in our network struggled financially after a spouse was diagnosed with EOAD at 54 years old and was no longer able to work. At this young age, these patients are often ineligible for insurance, financial and medical services. In this case, the patient was able to obtain Social Security Disability to assist with these struggles.

Further, folks with EOAD often fall into the “Sandwich Generation,” adults who are simultaneously caring for their aging parents and supporting their adolescent or young-adult children. Another family I met in the fall included a high school-aged child who had assumed caregiving responsibilities for their parent after school while the other parent worked late to provide for the family. This age difference also presents issues in finding peer support. A caregiver of our of our patients was looking into skilled nursing facilities and was shocked that most of the residents were 15-20 years older than his loved one.

At Penn’s Division of Cognitive Neurology, we understand the differences and difficulties young caregivers caring for people with early-onset Alzheimer’s and dementia face. I am happy to announce the creation of a new support group for those caring for loved one with early-onset Alzheimer’s disease and other dementia related diagnoses (i.e. frontotemporal dementia, dementia with lewy bodies, corticobasal degeneration, primary progressive aphasia, etc). The support group will begin 6 p.m. to 7:30 p.m. on Wednesday, March 13, at 241 Ralston House, 3615 Chestnut Street, Philadelphia. For more details, or to RSVP, contact Cynthia Clyburn, MSW, LSW, at cynthia.clyburn@uphs.upenn.edu or 215-360-0254.

Job Opportunity

The Penn Memory Center is seeking a Clinical Research Coordinator B to join our multi-disciplinary team of health professionals. For more information about the full-time position and to apply, click here.

Now Enrolling: ‘Time Out’ Program

Time Out, an award-winning mentorship and respite care program, is recruiting students and families. Private respite care often costs more than $20 an hour, but Time Out care providers will be available for $8.50 an hour for up to 10 hours per week. For more information about the program and services provided, click here.

Families who would like to register or learn more should contact Alison Lynn, MSW, LCSW, at alison.lynn@uphs.upenn.edu or 215-360-0257.

College students who would like to register or learn more should contact Roynell Sanders at timeout@temple.edu and register for an information session at http://tinyurl.com/timeout2019.

Upcoming Events

ARTZ Philly has two upcoming events specifically for care partners, called Café for Care Partners: Occupational Therapy. At both events Jefferson occupational therapy doctoral students will discuss how occupational therapy-based interventions can enhance quality of life in general and make daily living less of a hurdle. The first session is Tuesday, March 5, from 1:30 to 3:00 p.m. at St. Stephen’s Episcopal Church, 19 South 10th St. Register here for the Tuesday event. The second session is Saturday, March 9, from 10:30 to 11:30 a.m., location TBD. Register here for the Saturday event.

Memory in Motion is a free dance class tailored to meet the challenges of people living with dementia and their caregivers. The class incorporates simple, adaptive movements set to musical favorites from the ’40s to present day in an open and accepting environment. The class is held every Monday between March 11 and April 22 from 11:00-11:45 at BalletX, 1923 Washington Ave. To RSVP, contact Felicia Greenfield at felicia.greenfield@uphs.upenn.edu or 215-662-4523.

Dr. Nancy Hodgson, PhD, RN, FAAN, of the School of Nursing at the University of Pennsylvania, will be talking about her new book, Better Living with Dementia: Implications for Individuals, Families, Communities, and Societies, on Thursday, March 14, at 3:30 p.m. to 4:30 p.m. in Penn’s Biomedical Library. Hodgson and her co-author, Drexel’s Dr. Laura Gitlin, investigate the struggles of families living with dementia in their new book. Register here. Refreshments will be served.

Our “Empowering Caregivers” spring series kicked off in early February. The next sessions will be from 5:30 to 7:30 p.m. on Thursday, March 14, April 18, May 16, and June 20 at 241 Ralston House. Caregivers will have access to area experts who will present on a variety of intensive topics from in-home activities to end of life care. Each talk is free and capped at 30 guests. More details about the series are here. To RSVP, contact Felicia Greenfield at felicia.greenfield@uphs.upenn.edu or 215-662-4523 and note which workshop(s) you’d like to attend.

Creative Expression Through Music, a collaboration between PMC and the Curtis Institute of Music, is a new, free program for PMC patients experiencing memory change or those with mild cognitive impairment or early-stage dementia. It’s intended to provide participants with a greater understanding of music, fun new tools for interacting through sound, and creative musical experience that flex their imaginations. Beginners are welcome. Session One will engage participants in collaborative, creative musical experiences and will assess their impact on participants’ mood and well-being. Session Two will focus on creating new music and building the skills and activities of Session One. Registration for Session One is now closed, but Session Two is still enrolling.

Session Two will meet from 2:30 to 4:00 p.m. on March 19, 26, April 2, 9, 16, 23, and 30. All sessions are held at The Curtis Institute of Music in Lenfest Hall, Room LH314. If you’d like to register or have questions, contact Matthew Volpe at matthew.volpe@uphs.upenn.edu.

Join Bridges to Wealth for a Financial Empowerment Series. Learn how to repair credit, reduce debt, and build wealth! The series consists of two classes on March 19 and 26 from 11:00 a.m. to 1:00 p.m. Both classes will be held at Lucien Blackwell Library, 125 S 52nd St., Philadelphia. The classes are free and open to the public. Lunch will be served.

The next Memory Café will be held on Friday, March 29, from 10:30 a.m. to noon at Christ Church Neighborhood House in Old City. There will be a special tasting event with members of Penn Appétit, the University of Pennsylvania’s student-run magazine covering all things food. Memory Café is exclusively for people with memory problems, including Alzheimer’s disease, and their partners/families. The program is free. Please RSVP to Alison Lynn at 215-360-0257 or alison.lynn@uphs.upenn.edu. All 2019 dates are posted here.

Sincerely,

The PMC Communications Team

Terrence Casey, Joyce Lee, Janissa Delzo, Linnea Langkammer, and Sharnita Midgett