Putting patients and caregivers in control of dementia

As stated in my last blog post, I recently had the opportunity to meet with the clinic coordinators from the 15 Memory Disorder Clinics in the State of Florida and from the ADI Brain Bank at the Alzheimer Resource Center in Orlando.

Included in the Memory Disorder Clinic group are:

• University of South Florida
• University of Florida
• University of Miami
• The Wien Center at Mt. Sinai
• North Broward Medical  Center
• East Central Florida
• Mayo Clinic – Jacksonville
• West Florida Hospital
• St. Mary’s Medical  Center
• Tallahassee Memorial Healthcare
• Orlando Regional Medical Center
• Lee Memorial Health System
• Sarasota Memorial Hospital
• Morton Plant Mease
• Florida Atlantic University

I want to thank this group for the opportunity to meet with them.  Recall, these are the people who work with dementia patients and caregivers every day.  During our 45-minute discussion, they shared the gaps and challenges they experience when helping people manage dementia.

The following are some answers, comments and ideas that were offered in our brainstorming discussion:

• We need to develop a continuum of programs which can be accessed by patients and caregivers at each stage of their journey. For example, today an early diagnosed patient may be able to  participate in a Brain Fitness Club or Memory Gym, but what happens when  they can no longer do so.  Then what?

• There are a number of people being diagnosed with mild cognitive impairment (don’t yet have clinical dementia), and with the right support, they can  remain and function at home.  There aren’t many programs for this part of the continuum.

• Many older patients are isolated, and this causes a challenge if the patient also has dementia.

• There are many people who are willing to help, but so few people access the services.  Why is this?

• Many caregivers are adult children, and they need education and support to handle a parent who has dementia.

• Many people don’t view themselves as caregivers, but they are.  Central Flroida just got grant for “SHARE THE CARE,” which includes info and communication regarding what it means to be a caregiver. It also includes a database of local information and where to get it.

• Caregiver Central via Weinberg Foundation

• Rural communities have additional challenges with access and communication and transportation.

• Many individuals have no family, so the attorney becomes the coordinator of finances, etc.

• Access and awareness are two critical issues.

• Is an awareness campaign necessary and would it be successful?

• Primary care physicians have difficulty directing patients and caregivers because of time and awareness (of local services). Maybe we need to create a tool to educate physicians so they know where to send their patients and/or caregivers.

• Nice to follow up with patient and caregiver after they leave clinic.

• Caregivers can delay the time an individual needs to transition to an institution. Payers need to understand this.  Maybe we need a study showing how caregiver training can extend time to institutionalization.

I welcome continued input from this group and from anyone else who might have suggestions or ideas.  This is an increasingly important issue (unfortunately) and something which needs to be addressed.