“Through the Eyes of the Caregiver: Frontotemporal Degeneration (FTD) and the Penn FTD Center” premieres at the Penn FTD Center Caregiver Conference 2017

On Friday, May 12, 2017, the Penn Frontotemporal Degeneration (FTD) Center hosted its 9th annual Penn FTD Caregivers Conference at the University of Pennsylvania. The day-long conference held at the Smilow Center for Translational Research welcomed 150 attendees and consisted of a series of lectures that covered information around the latest scientific advances in research on FTD and its related disorders, such as Amyotrophic lateral sclerosis (ALS) also known as Lou Gehrig’s Disease and Corticobasal degeneration (CBD), as well as practical caregiving issues such as strategies for symptom management, understanding the genetics of FTD and genetic testing options, respite and supportive resources for caregivers, and legal and long-term care planning.

One of the highlights of this year’s conference was the premiere of “Through the Eyes of the Caregiver: Frontotemporal Degeneration (FTD) and the Penn FTD Center,” a short film sharing the stories of three caregivers whose loved ones are patients at the Penn FTD Center.

“The brunt of this disease falls solely on those closest to the individual with the disease unfortunately and it is very difficult to navigate the healthcare system and obtain the types of resources that give structure to a patient’s day-to-day life and to help a caregiver keep a patient safe and cognitively stimulated,” said David Irwin, MD, assistant professor and Cognitive Neurologist in the Penn FTD Center. The goal of this video is to show caregivers and family members of those with FTD that they are not alone in this life-altering process and that there are many support groups and community and medical resources available to them – including many at the Penn FTD Center – to help them every step of the way.

Watch “Through the Eyes of the Caregiver: Frontotemporal Degeneration (FTD) and the Penn FTD Center”*:

Two Penn FTD Caregivers Conference sponsors, the Alzheimer’s Association Delaware Valley Chapter and the Association for Frontotemporal Degeneration (AFTD), were also in attendance to answer questions and present information on the many advocacy and community resources that they offer for patients with FTD or related disorders and their families and caregivers.

Learn more about the Penn FTD Center at: https://ftd.med.upenn.edu

* Learn more about each individual caregiver by watching their full story! Click the “i” icon bubble in the top right hand corner of the video for a drop down menu with links to each caregivers story! If you are watching on a mobile phone, click the title of the video which will open a drop down menu containing the links to each caregiver’s story as well as a link to the Virtual Tour of Penn’s FTD PPG and Penn FTD Center to learn more about the FTD research and care taking place at Penn.

Frontotemporal Degeneration: It’s more than just dementia

What is Frontotemporal Degeneration (FTD)?

FRONTOTEMPORALLOBES
FTD is an aging-related neurodegenerative disease affecting the frontal and temporal lobes of the brain, disrupting a variety of functions such as behavior, personality, language, movement, and in some cases, cognition.

According to the Association for Frontotemporal Degeneration (AFTD), the most telltale sign of FTD is a gradual and progressive decline in behavior and/or language. As the disease progresses, planning and organizing activities, behaving appropriately in public settings, and socializing generally become increasingly difficult for individuals with FTD.

The disease often occurs in a person’s 50s or 60s, but has been seen as early as 21 and as late as 80. It is the most common form of dementia in people under 60 years old.

Is FTD inherited?

When asked during a past Q&A with the Boston Globe, Murray Grossman, MD, director of Penn’s FTD Center, explained that FTD can be inherited, but that it is not typically the case. “Twenty-five percent of the patients we see with FTD have a high-risk family history,” he said, but the remaining 85 percent are considered “sporadic FTD.” In sporadic FTD, there is no known cause—genetic or environmental—and researchers are still searching for any signs of genetic changes that may be responsible for these random cases.

Is FTD curable?

There is currently no cure or treatment for FTD.

Some medications such as antidepressants, neuroleptics (antipsychotics), and dopaminergic agents used in Parkinson’s disease, can be prescribed to help manage symptoms, but should be treated on a case-by-case basis as there is always a risk for worsening symptoms, adverse reactions, and other unfavorable side effects.

A Family’s FTD Story

The video below, produced by CurePSP, tells the story of artist David Wetzl and his journey with Frontotemporal degeneration and gives a first-hand look at exactly what this disease can strip from you in your prime of life.

To learn more about FTD, visit:
The Penn FTD Center
The Association for Frontotemporal Degeneration


RELATED EVENT:

Penn FTD Center Caregiver Conference

 On May 20, 2016, the University of Pennsylvania’s Frontotemporal Degeneration Center will host their Annual FTD Caregiver Conference. This day-long event is for caregivers and anyone else interested in learning more about FTD and related conditions such as Amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease) and Corticobasal Degeneration (CBD).

This event is free and open to the public. Registration is required and opens on April 8, 2016.

Event Details:
Friday, May 20, 2016
8:00am – 4:30pm
Smilow Center for Translational Research
3400 Civic Center Boulevard
Philadelphia, PA 19104

For more information on the event, including the agenda, participating advocacy groups, and giving opportunities, please contact:
Christine Ray at rayc@mail.med.upenn.edu or (215) 349-5873

Out of town? If you plan on traveling to Philadelphia for the conference from another city or state, please visit the University of Pennsylvania’s visitor page for information on local accommodations.

To see coverage from last year’s 2015 FTD Caregiver Conference, click here.

Welcome!

Thanks for stopping by the new Institute on Aging blog, Science of Aging! We’ll be working hard to share the latest research on age-related diseases, updates from IOA lectures and events, and news featuring Penn’s Institute on Aging experts.

We decided to launch our social media efforts to open the doors and invite you in for a look behind the scenes at Penn’s Institute on Aging, where we’re constantly seeking ways to improve age-related conditions, from Alzheimer’s to osteoporosis. Continue reading

Getting Seniors Moving

What if you only burned 54 calories or spent less than a minute moderately exercising a day? That’s the average movement seniors in assisted living facilities may be getting, warned our latest Penn Institute on Aging’s Visiting Scholar speaker. Older adults in all sorts of settings – in nursing homes, hospitals, assisted living facilities, and even at home – are moving less.

Last week, we were excited to have Barbara Resnick, PhD, RN, CRNP, Sonya Ziporkin Gershowitz Chair in Gerontology and Professor of Nursing at the University of Maryland, come share her expertise with us, on optimizing function among older adults, in essence, getting older adults moving. Dr. Resnick is the first nurse to become President of the American Geriatrics Society. She explained that, without movement built into daily activities, older adults may lose function, slow down even further, and be at increased risk for infections such as pneumonia.

Here’s a quick video recap from Dr. Resnick’s talk:

The ability to move – to get dressed, to walk to the bathroom, to feed yourself – is precious and can be taken for granted. As people get older and frailer, their motivation to preserve and maintain their movement ability seems to dip. Sometimes, caretakers can help “too much,” from lacing up shoes or bringing in a bed pan, limiting the amount of movement patients have.

As Dr. Resnick asked, “How do you know if someone’s capable if you don’t ask them to get dressed, feed themselves, go to bathroom?” In hospital settings, she cited a sobering statistic: in one study, hospitalized elders spent 83 percent of their time in bed. Often, the only time they were out of bed was to go to physical therapy.

To counter the inactivity, she suggested infusing movement into daily activities. Even 10 minutes of activity is important. While it may take longer for a loved one to get dressed without help, it’s a valuable exercise for them to do.

If you care for someone who could use some extra activity in their lives, Dr. Resnick offered a few tips to help optimize function for older adults:

Set up an environment that is safe, clear of any clutter, and comfortable to move in. Acknowledge, anticipate, and prevent any barriers to movement: fear of falls, pain, fatigue that comes with activity, she says. Individualized care makes a difference. So, if the height of a bed or chair is making it difficult to rise from, adjust accordingly.

Educate the patient’s care team, to help them understand that the older adult will be taking a more active role in their own care. Moving more means less risk of pneumonia, infections, and building strength to complete daily tasks.

Assess the individual’s capability – physical and cognitive – then set goals. What do they want to be able to do, both short term, and long term. Do they want to attend an important event (wedding, graduation, etc.)? Or maintain independence when bathing?

Motivate the older individual and their caregivers. Try reigniting old interests, such as swimming, and add new and different activities, like tai chi. This helps strengthen motivation and resilience. To motivate those with cognitive impairment, modify how you communicate the activity. You may need to use one step commands, repetition, or demonstrations to convey the message. People with dementia may not remember activity, but will remember it felt good and it was enjoyable, said Dr. Resnick.

Just remember – any activity is better than nothing!