Illinois Cognitive Resources Network

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Caring for Someone With a Frontotemporal Disorder

People living with frontotemporal disorders (FTD), sometimes called frontotemporal dementia, can have a range of symptoms, including unusual behaviors, emotional problems, trouble communicating, and difficulty walking. There is no cure for FTD and no way to slow it down or prevent it. However, there are ways to help manage symptoms. Consider these strategies to help manage FTD:

  • Understand behavior changes in FTD. Try to recognize it’s the illness “talking” and accept rather than challenge people with behavioral symptoms. Arguing or reasoning with the person will not help; they cannot control their behaviors or even see that they are upsetting to others.
  • Help with language issues in FTD. Speak slowly and clearly, use simple sentences, wait for responses, and ask for clarification if you don’t understand something. Gesturing, drawing, and using labeled photos of people and objects may allow you to communicate without talking. A speech-language pathologist can determine the best tools and strategies for a particular person.

Learn more strategies to help manage frontotemporal disorders.

Illinois Department of Public Health Launches The Healthy Brain Newsletter

The Illinois Department of Public Health’s Division of Chronic Disease is pleased to announce the creation of “The Healthy Brain Newsletter.” The goal of this newsletter is to deliver trusted information and education about healthy cognitive aging, ways to support brain health, dementia caregiver support, and other relevant highlights including community resources and events throughout Illinois.

The newsletter’s first quarterly issue debuted earlier this month. Click here to sign up to receive your copy of The Healthy Brain Newsletter. Please share this exciting news with your contacts.

Additionally, if you have an ADRD (Alzheimer’s disease and related dementias) event and/or brain health news that you would like to have featured in a future issue, please email all pertinent information, links and graphics to: DPH.BrainHealth@illinois.gov for consideration.

Thank you for your support in sharing The Healthy Brain Newsletter!

22nd Annual Evanston Aging Well Conference, May 3-6

Join the City of Evanston and its residents for three days of fun-filled and health-educational events. There is NO fee to attend any of the events.

Day One: Aging Well Film Night – featuring “Team Dream”

Date: Wednesday, May 3, 2023 at 6 p.m.
Location: The Levy Senior Center, 300 Dodge Ave., Evanston 
Register in advance to attend

The 2023 Aging Well Film Night will feature the film Team Dream. In this short documentary film, we meet close friends Ann Smith and Madeline Murphy Rabb in their final days of preparation for the 2022 National Senior Games. While they train, we learn about their lives growing up amid segregation and stigma before breaking boundaries in their adopted hometown Chicago. A decade after joining Team Dream, a Chicago-based organization training women of color in swimming, biking and triathlon, the two women continue to reach goals they never thought possible. When Misha, a former Division I swimmer, helps them with their starts and turns, the women help her find her way outside the pool. The film culminates with Ann and Madeline competing at the games in Fort Lauderdale, Florida. TEAM DREAM shows you’re never too old to dream. A short discussion will take place immediately after the films. 

Day Two: Aging Well Conference – registration now open

Date: Friday, May 5, from 8 a.m. until 1 p.m.  

Location: The Levy Senior Center, 300 Dodge Ave., Evanston 

This free, half-day conference for older persons and their care partners presents an array of educational workshops on topics including health and wellness, safety, nutrition, technology, legal issues, financial planning, and the arts. 

The conference will open with registration and a continental breakfast at 8 a.m., followed by a welcome from City of Evanston Mayor, Daniel Biss, and the keynote address by Paula Basta, Director for the Illinois Department on Aging. Conference transportation is available through the Levy Senior Center for individuals who live in Evanston. For more information, please call 847-448-8250.

Attendees are then invited to participate in two workshop sessions. Workshop pre-registration is required and workshop selections will be available on March 20th. The conference will conclude with lunch and a celebration of the Aging Well Award Recipients for 2020 (Susan Cherco) and 2023.  

Day Three: Hoops for the Ages Basketball Tournament 

Date: Saturday, May 6, 2023 from 9:00 am until 5:00pm
Location: The Levy Senior Center, 300 Dodge Ave., Evanston and Robert Crown Community Center, 1801 Main St., Evanston, IL

The Hoops for the Ages 3-on-3 Basketball Tournament celebrates playing basketball for life!  Men and women basketball players ranging in age from 40 to 90 from across Chicagoland will compete  at the Robert Crown Community Center and the Levy Senior Center in Evanston.  You are invited to come play or come watch.  

Contact with any questions regarding this tournament

Volunteers Needed for Studies to Advance Dementia Research

Interested in volunteering for research on Alzheimer’s disease, related dementias, and cognitive health? Learn about new and featured studies below or search for clinical trials and studies near you with the Alzheimers.gov Clinical Trials Finder.

New and featured studies

Click on the trial name for details and contact information.

Caregiving

Cognitive Training

Daily Functioning

Exercise and Supplements

Featured Registries and Matching Services

  • Asian Cohort for Alzheimer’s Disease (ACAD) — Sign up to join a study to identify risk factors associated with Alzheimer’s in people of Asian ancestry.
  • MindCrowd — Enroll to take a brief online cognition test and join a registry to be contacted about future research studies on the aging brain.
  • Trial-Ready Cohort – Down Syndrome — Enroll to help improve methods for tracking Alzheimer’s progression in people with Down syndrome through cognitive and clinical testing, genetic and biomarker testing, brain imaging, and other tests.

Get more information about these and other Alzheimer’s clinical trials online. Or call the ADEAR Center at 800-438-4380 or email adear@nia.nih.gov.

Questions About End-of-Life Care for a Person with Dementia

Dementia can present special end-of-life care challenges, in part because the disease progression is so unpredictable. When someone has dementia, it’s important to understand available end-of-life medical options and weigh the benefits, risks, and side effects of any treatment. You might ask the health care team:

  • Who can help with end-of-life care?
  • How will your suggested approaches affect the person’s quality of life?
  • What options are available if care is no longer possible at home?

Explore more questions about end-of-life care for a person with dementia. This information is also available in Spanish.

New video: Genetics and Alzheimer’s disease

Genes are the building blocks that make us who we are — what we look like, how we age, and even which diseases we may develop. Understanding the role genes play in Alzheimer’s disease and related dementias is key to finding effective methods of prevention and treatment.

Watch this video to learn about genetics and Alzheimer’s disease.

Sense of Smell Linked to Speed of Brain Loss and Cognitive Decline, Alzheimer’s May Increase DNA Variants in Brain Neurons

Check out the latest in aging advances, research, and events from NIA:

Tips for Changes in Communication and Behavior for People With Dementia

Communication can be hard for people with Alzheimer’s and related dementias because they have trouble remembering things. They also can become agitated and anxious, even angry. In some forms of dementia, language abilities are affected such that people have trouble finding the right words or have difficulty speaking. You may feel frustrated or impatient, but it is important to understand that the disease is causing the change in communication skills. To help make communication easier, you can:

  • Reassure the person. Speak calmly. Listen to his or her concerns and frustrations. Try to show that you understand if the person is angry or fearful.
  • Allow the person to keep as much control in his or her life as possible.
  • Respect the person’s personal space.
  • Build quiet times into the day, along with activities.
  • Keep well-loved objects and photographs around the house to help the person feel more secure.
  • Remind the person who you are if he or she doesn’t remember, but try not to say, “Don’t you remember?”
  • Encourage a two-way conversation for as long as possible.
  • Try distracting the person with an activity, such as a familiar book or photo album, if you are having trouble communicating with words.

What Causes Mild Cognitive Impairment?

Genes are the building blocks that make us who we are — what we look like, how we age, and even which diseases we may develop. Understanding the role genes play in Alzheimer’s disease and related dementias is key to finding effective methods of prevention and treatment.

Watch this video to learn about genetics and Alzheimer’s disease.