Researchers at the University of California, San Francisco Memory and Aging Center are conducting a study to better understand and diagnose Primary Progressive Aphasia (PPA) in Chinese-speaking individuals. This study will develop and validate the first comprehensive Chinese Language Assessment Battery for Primary Progressive Aphasia (CLAP).

The study involves comprehensive language assessments, brain imaging (MRI), cognitive testing, and blood sample collection. Some participants will be asked to return for follow-up assessments to track changes over time. This research will help improve diagnosis and care for Chinese-speaking individuals with PPA, a group that has been historically underrepresented in medical research.

Who may be eligible to participate?

• Must be a native Chinese speaker
• Must be diagnosed with PPA/FTD OR be a healthy volunteer

Participants will undergo:

• Specialized Chinese language assessments (available in both Mandarin and Cantonese)
• Brain imaging (MRI)
• Cognitive testing
• Blood sample collection
• Optional follow-up visits over the five-year study period

Travel and accommodation costs will be covered for both the participant and one companion.
Note: Assessments are also available in English, Spanish, and Tagalog for multilingual participants.
For more information, please contact: (415) 514-6543 | kassey.chang@ucsf.edu

Recruiting 09/2024 - 09/2026

The University of Utah College of Nursing is recruiting for the LEAD Study = Life-Planning in Early Alzheimer's and Other Dementias. Discuss your end-of-life care preferences with the person who will be involved with your care.

• Have you noticed changes in your memory or thinking skills?
• Have you been diagnosed with mild cognitive impairment, Alzheimer’s, or another type of dementia?
• Are you or will you be caring for a person with memory changes or dementia?

Researchers are looking for pairs who would like to complete advance care planning documents and discuss their care preferences with each other.

This study lasts 20 weeks, but only takes six hours of your time. You can participate in the comfort of your own home using your laptop, desktop computer, tablet, or Chromebook. Participants will be paid for their time.

Who can Participate:
This study is for pairs (2 people). The first person has changes in their memory or is in the early stage of dementia. If you are this person, you may be eligible to participate if:

• You are age 50+
• You are interested in having conversations about and documenting your wishes for your future care
• You have noticed changes in your memory or thinking skills OR
• You have been diagnosed with mild cognitive impairment, Alzheimer’s disease, or another type of dementia, such as FTD.
• The second person is the care partner, usually a spouse/partner, family member, or close friend. If you are the care partner, you may be eligible to participate if:
• You are the spouse/partner, family member, or close friend
• You are age 18+

How to Participate: Email lead@utah.edu, call 801-587-7353, or complete the study questionnaire.

This study is conducted by Dr. Kara Dassel University of Utah College of Nursing IRB_00132042.

Researchers at the University of Texas at Austin School of Nursing are looking for research participants to help reduce burden of caregiving on the health of Asian American midlife women family caregivers of persons living with Alzheimer’s Disease (PLAD) and related dementias.

You may be eligible to join if you:

• Are aged between 40 and 65
• Can read and write English, Mandarin Chinese, or Korean
• Live in the United States
• Identify as Chinese or Korean
• Are a community-dwelling family caregiver of a person living with Alzheimer’s Disease [PLAD] or a related dementia, such as FTD
• Are providing at least 4 hours per day (on average) assistance to PLAD

The research team: Dr. Eun-Ok Im and her team at The University of Texas, Austin want to learn effectiveness of the newly developed program in improving health outcomes of Asian American midlife women who are family caregivers of persons living with Alzheimer’s disease and related dementias.

About the study: TACAD study is an online study and does not involve medication nor travel. TACAD is Technology-based Information and Coaching/Support Program for Asian American midlife women who are family Caregivers of persons living with Alzheimer’s Disease.

Up to $150 will be provided during this 3-month study duration.

For more information, visit this link: https://tacad.research.nursing.utexas.edu/

or contact the study team at
tacad.help@austin.utexas.edu or 512-232-2323

Recruiting 6/2024 - 11/2024

Researchers want feedback on a new online self-help program for adults with dementia.

Researchers at the Institute for Disability Research, Policy and Practice and Utah State University’s Acceptance and Commitment Therapy Research Group are recruiting for a study evaluating an online, self-guided mental health program for adults with a recent dementia diagnosis (UtahACT.com/CompassionCompass.html). The program provides skills to help improve your quality of life by focusing on what matters most to you.

Participating in this study would involve completing a phone screener, participating in an online mental health program, online surveys at four time points (baseline, 10-15 minutes; post-test, 10-15 minutes; 2-week follow-up, 5-10 minutes; and 4-week follow-up, 5-10 minutes), and a qualitative interview (30-45 minutes). The online mental health program consists of one session and takes about 30-45 minutes to complete. You would receive up to $60 for completing all surveys and the interview after completing the program (all payments made via Amazon gift cards).

You need to have received a medical diagnosis for dementia in the past year, live in the United States, be fluent in English, be able to access the internet via a computer or phone, and have interest in completing an online mental health program in order to participate.

If you are interested, you can learn more by visiting the study website.

If you have any questions about the study, please contact the study coordinator at CMHP@usu.edu. The principal investigator for this study is Dr. Heather Kelley (heather.kelley@usu.edu) and this study has been approved by the USU Institutional Review Board (Protocol #14297)

Researchers at the Mayo Clinic are currently enrolling patients to participate in an observational study aimed at learning more about Primary Progressive Apraxia of Speech, Primary Progressive Aphasia and other related disorders. The study involves traveling to Mayo Clinic in Rochester, MN on a yearly basis to complete tests designed to help researchers learn more about these diseases and how they affect the brain over time. Participants will see a Neurologist, Speech Language Pathologist and have imaging scans like MRI, FDG PET, Amyloid PET, Tau PET and/or Neuroinflammation PET. All of the tests and doctor visits are covered by the study.

If you’re interested in learning more, please contact Sarah Boland, CCRP at boland.sarah@mayo.edu.

Recruiting 09/2023-5/2027

Are you the primary caregiver for a loved one with dementia?

The T-SCAN Lab at Rice University is seeking primary caregivers for a loved one with dementia, including FTD, to participate in a research study on emotion and coping strategies for caregivers. Participation is 100% online, meaning you can participate from the comfort of your own home or wherever you are. The full study involves about 6 hours of participation over the course of 3 months. You will be compensated via Amazon e-gift card for your time in the study, up to $120 total.

• Part 1: Study introduction and consenting process via live video chat
• Part 2: Questionnaires, heart rate monitoring, task introduction via live video chat
• Part 3: One week of daily brief check-ins via smartphone
• Part 4: Follow up questionnaires

Questions? Want to participate? Call/email Research Coordinator Nia Walls at 713-348-3528 or caregivers.tscan@gmail.com

Principal Investigator: Bryan Denny, PhD, Professor

Telephone: 713-348-8257, Email: bryan.denny@rice.edu

Recruiting March 2024 - March 2028

Who?
Individuals with a diagnosis of Primary Progressive Aphasia and their Communication Partners.

Why?
Researchers at the University of Chicago - Healthy Aging & Alzheimer's Research Care Center want to develop evidence-based strategies to maximize communication participation and quality of life and minimize burden of persons with PPA and their communication partners.

Where?
All components of the study take place remotely via telehealth.

How Long?
Over the course of 18 months, participants in the study will be involved in:

• Up to 10 evaluations with a licensed speech language therapist
• Up to 25 therapy sessions with a speech language therapist
• Exercises through a web-application

There are no costs to participate in this study. Compensation will be provided.

If interested, contact the study team for more information:

• Phone: (773) 795-1111
• Email: cbtrial@uchicago.edu
• Website: haarc.center.uchicago.edu

Yale PET Center is studying behavioral variant frontotemporal dementia (bvFTD) with the new synaptic density positron emission tomography (PET) tracer 18F-SynVesT-1. The new tracer binds to a protein in synapses and provides synaptic measurements in living people. By comparing this to a known PET tracer, 18F-FDG, this study seeks to provide early detection and progression of bvFTD. Participation involves one phone screening and at least three in-person visits to sites in New Haven, Connecticut. In-person visits include a screening appointment, a magnetic resonance imaging (MRI) scan, and up to two PET scanning sessions. The study will recruit 15 persons between the ages of 40 and 80 who have been diagnosed with bvFTD. For more information, contact Salih Cayir at 203-785-6355 or email salih.cayir@yale.edu

The Family Caregiver Study is an anonymous online survey for people living with and caring for a family member (or chosen family member) with dementia. The goal of this study is to learn how to make family caregiving easier, specifically when it comes to managing swallowing difficulties. Note: Caregivers are invited to participate whether or not their care recipient is experiencing any swallowing problems at this time.

To participate, you must: 

• Be a caregiver for a family member (or chosen family member) with dementia
• Have been caregiving for at least 2 months
• Live at home with the care recipient
• Not be paid for the care provided

Participants will:

• Complete a 30-minute online survey of about 100 multiple choice questions
• Be asked questions relating to topics such as:
  • how the caregiver feels about caregiving
  • the medical condition of the care recipient with dementia
  • the caregiver’s knowledge of swallowing difficulties and dementia

Compensation:

• $40 gift card

To learn more: Please contact the researchers at eatinglab@uoregon.edu or (541) 346-7494.

Researchers at several sites across Canada, led by Dr. Simon Ducharme, are conducting a study to see if a medication named nabilone, taken by mouth, can help reduce restlessness and agitation in people with Frontotemporal Dementia (FTD), including bvFTD and PPA. They are inviting people who are thought to have FTD and are experiencing these challenging behaviors to participate. The aim is to see if this medication can provide some calm and comfort compared to a dummy pill (placebo) that doesn’t contain any medicine.

You, or someone you care for, may be able to take part if you/they:

• Are over 18 years of age
• Have symptoms of FTD
• Experience agitation, irritability, or aggression
• Have an available study partner
• Are living in Canada

For more information about the study and research sites participating in the study, visit https://clinicaltrials.gov/study/NCT05742698?term=NCT05742698&rank=1

Nabilone has not been approved for FTD by the FDA or any other health authority.

Are you concerned you or a loved one has FTD? Have you recently had difficulties with planning, organizing, or solving problems? Changes in personality or mood that affect your daily life? Problems managing or completing task you’ve done before? If you are between the ages of 40 and 64, and are concerned about your thinking or memory ability, the BEYONDD study might be right for you. Volunteers from diverse populations (Latinx/Hispanic, Black/African American, Asian American, Pacific Islander, and American Indian/Alaska Native) are needed to help researchers improve brain health in these groups.

BEYONDD is a diverse team of doctors, scientists, and other researchers, working together to bring diversity and inclusion to early onset dementia (EOD) research by reaching out to adults from diverse populations. EOD impacts people at the peak of life. It changes the way people think, act, talk, and behave.  Little is known about EOD in diverse populations.

Join the study looking to lower the health disparities in the U.S. and make sure that people of all races are included in finding new ways to treat EOD. Study volunteers get some amazing perks. You’ll get to work with world-renowned experts and learn more about your own health. You’ll have access to digital tests of thinking and memory, clinical laboratory tests, and feedback from the clinical team – all from the comfort of your own home. If you are able and willing to come into one of BEYONDD’s expert centers after completing the online study, you can access a one-on-one session with a BEYONDD doctor and brain scans. Even better, it’s all at no cost to you.

For more information, visit www.beyonddproject.org or call us at 1 (866)-7MYMIND.

Researchers from Indiana University, in collaboration with a small business, CareVirtue, recently received funding from the National Institutes of Health (NIH) to study whether a personalized legal and financial planning platform for family caregivers of people living with Alzheimer’s disease and related dementias is useful. They are currently looking for family caregivers to participate in this research study. 

The study asks you to use CareVirtue Planner, a financial and legal planning platform that provides financial and legal planning education and support to family caregivers of people living with dementia on a laptop or desktop computer for 3 months, and to answer questions about your experience using CareVirtue Planner during and after your time using the platform. If you agree to participate, you will be compensated up to $150 and will be able to use CareVirtue Planner without cost for one year. At the end of one year, you will be able to opt into the paid version of CareVirtue.

To be eligible, participants must:

• Be a self-identified primary caregiver status for someone with Alzheimer’s disease or related dementias
• Have access to the internet and access to a laptop or desktop computer
• Be over the age of 18

If you are interested in participating or to learn more, please contact study team led by Dr. Werner at werneriu@indiana.edu. Your email will not obligate you to take part in the research study. Your participation is completely voluntary, and you can change your mind at any time. 

Researchers at Rutgers University are launching the largest brain marker study in New Jersey to understand what our brain cells are telling us about aging and dementia.

You may be able to take part if:

- You are healthy with no memory concerns or only age-related changes;

OR

- You have a diagnosis of mild cognitive impairment (MCI), Alzheimer’s dementia, frontotemporal dementia (FTD), primary progressive aphasis (PPA), or dementia with Lewy bodies

Study activities include:

1. A short health survey
2. Brain MRI
3. Pencil-and-paper tests on your memory and thinking
4. A brief & safe procedure to collect a small sample of spinal fluid from your low back.

Lead scientist: William Hu, MD, PhD

Study Contact: Alice Dawson (732)-595-6336 Memory411@rutgers.edu

This study aims to understand how taking care of a spouse with dementia affects the mental and physical health of caregivers. The goal is to help researchers develop a writing intervention for stress and grief that is unique to the experience of caring for a spouse with dementia. If you agree to take part in this study, you will be invited to participate in up two 90-minute focus groups moderated by Dr. Angie LeRoy and a research assistant. Participants will be compensated $30 for each focus group they participate in.

ELIGIBILITY

• Self-identify as the primary caregiver to your spouse (with a diagnosis of Alzheimer’s disease and related dementias, including FTD)
• Devote at least 4 hours of daily caring of your spouse for at least the last 3 months
• Must be married or self-defined as a long-term committed partner to your spouse with Alzheimer’s disease or a related dementia for at least 3 years
• 60 years or older

For more information, contact the researchers at HEALingresearch@baylor.edu or (254) 710-1550

Researchers at the Canadian Consortium on Neurodegeneration in Aging is seeking Canadian FTD caregivers and healthcare providers who can share their experience and contribute to the improvement of FTD clinical care.

Study purpose: To gain a better understanding of the journey of people with a diagnosis of frontotemporal dementia or a related disorder and their caregivers within the Canadian healthcare system.

Eligibility:

Canadian, aged 18 years or older, and a:

• Caregiver of a person who received a diagnosis of:
  • Frontotemporal dementia, behavioral variant (bvFTD)
  • Primary progressive aphasia (PPA)
  • Corticobasal syndrome (CBS)
  • Progressive supranuclear palsy (PSP)
  • FTD with amyotrophic lateral sclerosis (FTD with ALS)

Or

• Healthcare provider of patients with aforementioned clinical diagnoses.

For more information, contact frontotemporal.research@gmail.com or click here to access the study survey:  https://www.surveymonkey.com/r/Canadian-Survey-on-FTD-and-Related-Disorders

Duke University is recruiting patients with Alzheimer’s, frontotemporal dementia, mild cognitive impairment, Parkinson’s, Down syndrome, multiple sclerosis, PTSD, concussion, traumatic brain injury, dementia, or other neurodegenerations fora study to take noninvasive pictures of the retina in your eyes.

No x-rays, no eye drops and no eye contact. Compensation for time/travel.

You may be eligible for this research study if you:

• Do not have a significant head tremor
• Are not in a wheelchair
• Have not had prior retina surgery 
• Are willing to have some undilated pictures of your retina

Email iMIND@duke.edu for further details! Please feel free to forward this message to friends or family members who may be interested in participating in this study. The study visit takes 30-45 minutes. No charge to you or your insurance. The study is being conducted at the Duke Neurological Disorders Clinic, 932 Morreene Rd, Durham, NC 27705.

Researchers at the University of Pennsylvania are conducting a study to determine whether a form of non-invasive brain stimulation called transcranial direct current stimulation (tDCS) in combination with constraint-induced language therapy (CILT) can improve the language abilities of people with primary progressive aphasia (PPA). 

tDCS uses a mild electrical current, about the same strength as a 9-volt battery, to stimulate regions of the brain from outside the head. This is performed using two small electrodes placed inside saline-soaked sponges held on the scalp using an elastic band. CILT is a form of speech therapy that focuses on improving speech production in everyday life.

Who may be eligible to participate?

• Must be at least 45 years old
• Must have aphasia due to PPA
• Must be proficient in the English language

Participants will be compensated for their time and travel.

For more information, please contact the Laboratory for Cognition and Neural Stimulation at 215-573-4336 or braintms@pennmedicine.upenn.edu.

Researchers at Clemson University under the guidance of Dr. Emma Dixon (eschare@clemson.edu) are inviting people with age-related cognitive changes to participate in a research study exploring the use of apps on smartphones. The study involves your participation in a 1 time 25-minute online survey. There are no monetary incentives for participation, but your input will help researchers understand how smartphones are used by people with age-related cognitive changes. By understanding this, they hope to design more accessible smartphone applications that fit the desires of end-users with age-related cognitive differences.

REQUIREMENTS:

1. 18 years of age and older
2.  Self-identify as a person living with subjective cognitive decline or have been diagnosed by a medical professional with mild cognitive impairment or dementia.

Contact: To get more information about the study and/or to sign up for the study, please email Margi Engineer (mengine@g.clemson.edu) indicating you’d like to participate in the survey.

What: Arizona State University is surveying former dementia caregivers via telephone to better understand who does better and who does worse after a death due to dementia. They also want to learn how some former caregivers meet their needs so they can share those strategies with others. This phone survey should take no longer than 60 minutes and they will pay $50.00 for your time and insights. Participation is voluntary.

Where: Participate from the comfort of home via telephone, or elsewhere if preferred.

Who is Eligible: Anyone that is 18 years or older and is a former caregiver for a person with dementia who is now deceased.

Contact: Former Dementia Care Lab, Arizona State University, 602-543-4492, formerdentiacare@asu.edu or click here to fill out an interest form

ACT for Caregivers is a web-based self-training program where caregivers learn about dementia, learn to cope with distress, and practice focusing on doing what matters.

• Learn research-based skills to manage stress
• Complete the program in 30 days or less
• Work at your own pace on your own computer

To participate, you must:

• Care for someone with Alzheimer’s disease, dementia, or memory loss, even if you don’t live with them
• Be over 18 years old
• Read and write English
• Live in the United States
• Have access to a computer, smartphone, or tablet with internet

You will be asked about distress you feel from your role as a caregiver, and if are interested in an online self-guided program.

How much time will it take?

• Modules take 30 min per week 1-2 times per week for about 4 weeks
• Online surveys take 30 minutes each 3-4 times
• Two optional phone or Zoom interviews take 60 minutes each (interviews are by invitation; not all who are interested will be selected)

Earn up to $100 in Amazon Gift Cards.

To learn more about participating, contact the research team at 435-797-1715 or email ACTforCaregivers@usu.edu

Recruiting through December 2024

Researchers at the University of Nebraska at Omaha are looking for older caregivers to an individual with Mild Cognitive Impairment, Alzheimer’s disease, or Frontotemporal Dementia in Nebraska, Iowa, Missouri, Kansas, South Dakota, North Dakota, Illinois, Michigan, Indiana, Wisconsin, Minnesota, and Ohio.

Study Information: IRB #0298-22-EP

• The study includes an online visit over zoom for approximately 90 minutes.
• Compensation for study participation is available.
• Experiment involves online questionnaires, interview, and computer tasks with a research assistant.

Eligibility criteria:

• Adult 50 years of age or older.
• Currently an unpaid family caregiver to an individual with Mild Cognitive Impairment, Alzheimer’s disease, or Frontotemporal dementia for 5 hours a week or more, and for at least 6 months.
• Comprehension of written and spoken English
• Completed a minimum of two years of high school or higher
• Normal or corrected to normal vision and hearing

Exclusionary Criteria:

• Neurological or psychiatric disease (e.g., stroke, depression), or drug or alcohol abuse
• Vision or hearing issues that are not corrected to normal
• Cognitive or motor difficulties
• Currently pregnant or breastfeeding

For More Information Contact, Naomi Adjei at: Ph:402-554-5961; email: ABELabUNO@gmail.com

Caring for a family member with dementia is demanding, and research has shown that it can negatively affect the physical and mental health of caregivers. This research study is being done to develop a unique matching process for connecting current and former caregivers with one another for the purpose of peer-to-peer emotional support. The study will help researchers determine whether caregivers of persons with dementia would find a technology-based caregiver matching program valuable.

What will you be asked to do? Participants in this 15-month study will complete an online matching profile, engage with caregivers they are matched with, complete questionnaires approximately every three months and touch base with the study coordinator.

Who can participate? Persons who have been in a caregiving role for someone with dementia for at least three months.

You may qualify if:

• You are a current or former dementia caregiver
• You have access to the internet

Participation involves:

• Using a web-based matching tool to meet other caregivers
• Completing questionnaires and surveys over the course of the study
• Checking in with a study coordinator at 3 time points
• Connecting with up to 5 caregivers over the course of the study

Potential benefits:

• Find new connections with whom to share your caregiving experience
• Give and receive emotional support related to dementia caregiving

Compensation available for participants.

For more information or to complete an eligibility screening: Email connect2caregivers@mayo.edu or visit C2C-General-Study-Information.pdf (prod-carehubs.net)

This study is enrolling children and young adults from families with frontotemporal dementia (FTD) and Alzheimer’s disease (AD) caused by genetic variants. For FTD, these include MAPT, GRN, or C9orf72. The purpose of this study is to better understand brain development in families with dementia. Brain development in persons from genetic FTD and AD families will also be compared to persons from neurodiverse populations.

Participation involves a 2- to 3-day visit to the University of California, San Francisco. This visit includes clinical and cognitive evaluation, MRI brain scan, emotions testing, questionnaires, and a saliva sample for genetic testing. Participants and their family members will not learn their mutation status. Participants must be between 7 and 17 years old (young adults up to 25 may be eligible), have a biological family member with genetic FTD or AD, and have a study partner who can accompany them. Travel, lodging, and meals will be reimbursed; and monetary compensation for the study will be provided. Target enrollment is 190 participants. You can find more information here.

The Frontotemporal Degeneration Center and the Linguistic Data Consortium at the University of Pennsylvania are working to develop simple, easy, and effective ways to track neurocognitive health through short interactions with a web app. You can help us create a large open dataset, which researchers all over the world will use to create and test automated methods to track neurocognitive health.

Today, diagnosing neurodegenerative disorders like Alzheimer’s Disease or Frontotemporal Degeneration depends on someone scoring below a low threshold on clinically administered tests, which often means that they’ve been suffering from the disease for some time. Often the time to diagnosis can be a decade or more if you live remotely or the condition has an uncommon clinical presentation. Easy and reliable tracking over time, including remote monitoring, will let us identify early changes and allow more timely diagnosis, and to see how neurocognitive health changes over time. The same methods will support large-scale evaluation of interventions, whether those are medications or lifestyle changes.

This project is not just aimed at participants with cognitive impairment, or even at elderly people — we need all ages and backgrounds and conditions. The tasks involve oral descriptions of two pictured scenes, and naming as many words as you can in a minute that are from a target category. We will publish an anonymized version of the data for use by research groups worldwide.

To participate in the first step of this project, which should take less than five minutes of your time, click here.

Recruiting from September 2007 to April 2027

The Language in Primary Progressive Aphasia (PPA) study aims to understand the behavioral, anatomical and physiological changes in people with PPA throughout the course of the illness. The researchers in this study want to increase awareness of PPA, educate others about this unique disorder, and to encourage more research to eventually develop therapies.

During the three-day research program, participants will be asked to undergo neuropsychological testing (paper and pencil tests that evaluate cognition), advanced imaging (MRI and PET), eyetracking experiments, and other computer and language testing batteries. Participants may be asked to return every two years to complete the same measures.

For participants not living near Chicago, IL, flights and accommodations (for both the person with PPA and their companion) will be covered by the study.

Additional information from AFTD:
During this three-day research program, participants will be asked to undergo neuropsychological testing (paper and pencil tests that evaluate cognition), an MRI (a non-invasive brain-imaging procedure), eyetracking experiments and other computer and language testing batteries. Participants may be asked to return every two years to complete the same measures.

The study will recruit approximately 15 participants with PPA per year. For participants not living near Chicago, IL, flights and accommodations (for both the person with PPA and their companion) will be covered by the study.

Contact: Michelle Los | 312-908-9681, ppa.research@northwestern.edu