TO EXPECT AT YOUR VISIT
Caregivers and Family Members
Length of Visit
How to Prepare for Your Visit
Patients and families are evaluated at the Memory
& Aging Program, located at Butler
Hospital, a major teaching hospital at Brown
Medical School in Providence, RI. Certain parts of the evaluation
may also take place on the Brown
University campus or at other teaching hospitals affiliated with
Brown. All these facilities are located near Butler Hospital and are
easily accessible. If you are coming from out of the area, you may wish
to spend a few nights in Providence to make your trip more relaxed.
A list of local accomodations is available here.
and Family Members
We recommend that CADASIL patients be accompanied on their visits by
a family member or other caregiver. Often this person is a spouse, parent,
or sibling. It is important that family members as well as patients
understand as much as possible about CADASIL.
When you arrive at the Memory and Aging Program you will be evaluated
by Diane Monast, RN, MSN, our nurse coordinator, and then have a neurological
exam with Dr. Stephen Salloway, MD, MS. If you have not already had
a genetic test for CADASIL, you may have blood drawn during the visit
for genetic testing. If you are interested in participating in our medication
treatment trial, you will meet with a research nurse to discuss
participation. Most CADASIL patients who visit us also have a neuropsychological
assessment with Dr. Paul Malloy, PhD, or a member of his team. This
assessment takes about two hours and includes various tests of your
memory and thinking.
One of our most important goals is helping CADASIL patients and their
loved ones to better understand the condition. We will explain what
kinds of experiences you can expect to have living with CADASIL and
what treatment and care options are available, including the latest
research developments. We also talk with caregivers about managing their
own stress and taking care of their mental and physical health. Finally,
we provide information and advice about issues related to genetic testing
and discussions about CADASIL with family members. For further advice
on this topic we can provide a referral to a genetics counselor.
We are also working on developing the use of a special kind of magnetic
resonance imaging, called diffusion
tensor imaging (DTI), to look at the effects of CADASIL in the brain.
If you are interested in participating in this study, you will have
a DTI scan taken.
The entire evaluation takes approximately three to five hours. It may
take place over one or two days, depending on your preferences and schedule
and whether it is an initial or follow-up visit.
We will remain in contact with you after your visit. If you live nearby
or if you are participating in the research trial, we will schedule
regular follow-up appointments. Follow-up visits usually take less time
than initial evaluations. If you live farther away we can receive updates
by phone and schedule a return visit at some point in the future. With
you permission, we will also provide relevant information from your
visit to your local neurologist, psychiatrist, or primary care provider
so that they can better care for you.
to Prepare for Your Visit
your first visit, you should bring the following information about your
experience with CADASIL:
- the symptoms
(especially strokes, migraines, and mood and memory problems)
- how long they
have been present,
- how often they
happen and how bad they are
- family history
of CADASIL, strokes, or memory problems
- other medical
You may want to
discuss some of these topics, especially family history, with family
members before your visit to help you prepare.