Below are the minutes from our monthly caregiver support group meeting. Meetings are free and open to the public. For more information click on the "Support Group" link.
FTD Support Group
Meeting Minutes- July 23, 2013
Announcement: Is there interest in the group having a guest speaker come talk about a new drug trial on tau? Tau Rx company wants to come chat. In the past, there have only a few clinical trials at Jax Mayo and USF. Previous trials have had some issues, hope with this for the future. (Consensus was yes, there is an interest).
Welcome to Dr. Dody
- Director of UF Memory Disorders Clinic
- Patients come to office, do an evaluation, send report to home physician to follow-up
- She is leaving a hard copy of AD Education Manual for the group to use. It will be located in the UF Cognition and Language Lab.
- Shared important resources, especially online and local
- Alz Place- adult day health care for people with progressive dementia; highly recommended by Dr. Dody
- Shared resources for disaster relief, especially during hurricane season. Know which shelters provide accommodations for people with dementia
- Checklist for family matters – bills, power of attorney, etc.
- Have a family gathering with those that you trust
Question- how do navigate the SSI before FTD patient is normal retirement age?
First, must assume that your initial application will be rejected. Find out who your case manager is and meet with them about what is required on the application form. Give what you think are ridiculous examples, i.e. a company would have to hire two people to ensure that the job could be done with the person with FTD.
Can also get a good attorney who will help with wording. Dr. Dody can also offer help if you want to run a paragraph by her.
FTD is a special exempt condition that can get SSI 5 years before AD
- Early symptoms- loss of boundaries or self-awareness (anosognosia)
Question- how to deal with that as a caregiver?
Know ahead of time when things might come up and keep an arsenal of distractors (i.e when at home- wrapped snacks, going outside, inside activity; when out in the community- pictures to spark convos to allow the emotion to calm down), bring objects to allow her to squeeze and do exercises, get patient to help the caregiver, spark conversation with old family stories
Things that increase fatigue factor can make things worse
Driving is a major point of contention
- Doctor can revoke license
- Make the car unusable
- Can report anonymously to DOT tip line
- Make paper copy to include in medical record of physician’s record
Question- how to find a good primary doctor that understands and believes the problem?
Suggestions: Dr. William Rios, Dr. Alan Goldblatt
Question- when trying to find the right word, when as the caretaker to intervene?
Difficult to balance. Whatever system works with your family that keeps the family happy.
- Exercise- research has found that walking is one of the best exercises for the brain
- Biking, resistance training, gravity weight-bearing exercise also good
- 30-40 minutes 5 days/week
- Important to stay hydrated, lots of fruits and veggies
- Reduce negative stress
- Constant release of cortisol can dampen areas of short term memory and longer term storage
- Indulgent activities- especially for caregivers that are just for themselves to distract them for awhile
Question: correlation between FTD and night horrors?
Sleep does change with some people with FTD, and some meds should not be taken at bedtime (i.e. airicept should be taken in the morning after breakfast). Avoid fats and carbs late at night because sleep quality will be inferior. Sometimes there’s something in the room that can be bothersome when waking. Its also important to start winding down in the evening by avoiding stimulants (caffeine), watching the news, arguing, stimulating tv programs, no pets in the room.
Next month: Clinical trials speaker. Meet again at Milhopper library at 3pm. Date set for Tuesday, August 20th.