In-Home Care for Patients With PSP and Related Disorders

Participants can elect to complete either the Home Visit Arm of the study or the Usual Care
Arm of the study.

Home Visit Arm:

This interdisciplinary home visit program consists of 4 visits to patients' homes over the
course of one year from a team of a movement disorders doctor, a nurse, a research
coordinator, and a social worker. The team will come to a patient's home and assess the needs
of both the patient and caregiver (if present), and connect the patient with any needed
services. These visits can replace or be in addition to seeing another movement disorders
doctor.

Usual Care Arm:

The information collected from the home visit participants will be compared to data collected
from participants who elect to complete the usual care arm of the study. These participants
and their caregivers (if available) will be invited to complete an online version of the
survey. They will be contacted 12 months after their initial completion of the survey to
complete a follow-up survey.

Inclusion Criteria:

- Subjects will be those diagnosed with progressive supranuclear palsy, multiple system
atrophy, corticobasal syndrome , Dementia with Lewy Bodies (DLB), or atypical
parkinsonism without mention of idiopathic Parkinson's disease.

- Subjects must be English speaking.

Additional Inclusion Criteria For the Home Care Arm:

- Each subject must either 1) be willing and able to provide written, informed consent
for the study, and for whom capacity to consent will be assessed, or 2) if unable to
provide informed consent due to lack of capacity, a caregiver is able to provide
informed consent and the subject provides assent to participation.

- Subjects must be homebound according to the Medicare definition: "Leaving your home
isn't recommended because of your condition; your condition keeps you from leaving
home without help (such as using a wheelchair or walker, needing special
transportation, or getting help from another person); leaving home takes a
considerable and taxing effort." (http://www.medicare.gov/pubs/pdf/10969.pdf)

- Subjects reside in Chicago at the time of Visit 1.

- The Subject must reside independently at the time of Visit 1.

- Subjects have one or more of the following criteria: fluctuation, multi-morbidity,
mismanages medication, cognitive impairment, symptoms of depression and/or anxiety,
high risk for re-hospitalization, high risk for nursing facility admission, suspected
elder abuse, recent history of increased falls in home, caregiver burnout suspected

- Ability to participate in the research study as deemed by the Principal Investigator.

Additional Inclusion Criteria For the Usual Care Arm:

- Independent access to an internet-connected computer in order to complete online
survey

- Valid email address

- Each subject must review and acknowledge their ability to provide informed consent for
the study via the first screen of the online survey

Exclusion Criteria:

- Diagnosis of idiopathic Parkinson's Disease

- Diagnosis of another neurodegenerative disease

- Subjects with active psychosis or exhibiting symptoms of a severe psychiatric disorder