The Association for Frontotemporal Degeneration (AFTD, theaftd.org) hosted a webinar for FTD caregivers called the “Care Paradigm.” The speaker at the January 12, 2017 webinar was Alvin Holm, MD, Director of the Cognitive and Behavioral Disorders Program at Bethesda Hospital in St. Paul, Minnesota. I heard Dr. Holm present his care paradigm at the AFTD conference last year; I thought it was worthwhile to think about one’s journey with neurological decline within the paradigm. The goal is to improve qualify of life through an integrated, comprehensive approach to care and treatment.
Fortunately, Brain Support Network volunteer Denise Dagan was willing to watch the 90-minute webinar. Though the webinar was focused on frontotemporal degeneration, Denise’s found the information applicable to any neurological disorder. Her notes are below. (There’s nothing FTD-specific in her notes.)
Should you be interested in watching the webinar, here’s the link on YouTube:
www.youtube.com/watch?v=6CVAAkOg3hE
A Care Paradigm for Persons with FTD
AFTD Webinar, January 12, 2017
Speaker: Alvin Holm, MD
90 minutes
I’ve also previously posted to the Brain Support Network blog the ten takeaways from the webinar from the point of view of an FTD caregiver. See:
www.brainsupportnetwork.org/care-paradigm-aftd-webinar-takeaways/
Denise’s notes are below.
Robin
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Denise’s Notes on
A Care Paradigm for Persons with FTD
AFTD Webinar, January 12, 2017
I recently watched a very good webinar about the “Care Paradigm.” The idea is to pull together a caregiving team with a plan to address, not only the symptoms of the disorder, but the whole person. In this video, the disorder is frontotemporal degeneration, but the concept holds for Parkinson’s Disease (PD), Alzheimer’s, Dementia with Lewy Bodies, and others.
These are the basics…..
“The Care Paradigm is a process that is forged over time in response to how the patient progresses and responds to treatment options,” said Dr. Alvin Holm.
It takes into consideration the primary diagnosis, any secondary diagnoses, and a person’s overall physical and emotional health.
It does not prescribe treatments the patient and/or caregiver cannot, reasonably, carry out, but takes into consideration what is realistically possible. This may require patients and caregivers to ask questions and speak up if what they’re being asked to do is not feasible for any reason.
The flip side is that the healthcare team cannot address what they do not know about. So, patients and caregivers should not feel it is complaining to inquire about symptoms affecting quality of life. Relief from those symptoms need not be overkill. Sometimes, education and changes to old habits, physical therapy, or other non-invasive methods can bring relief. If not, be persistent, and inquire about stronger measures.
The whole purpose of the care paradigm is to maximize quality of life by recognizing that wellness management and environmental support are part of the treatment plan. It is the interaction of these three areas of treatment, not just disease specific therapies.
Definitions:
“Disease Specific Therapies” = FDA-approved medications. Specific to Parkinson’s, these should be a structured medication schedule, not only to minimize ‘off’ periods, but to maximize observable patterns that will help your neurologist adjust medications, as necessary.
“Environmental Support” = a safe environment. Specific to Parkinson’s [and the atypical parkinsonism disorders], remove tripping hazards, install grab bars, etc. In cases of dementia, or delusions, the environment should also not be more demanding than the patient can cope with to minimize agitation.
“Wellness Management” = overall health, diet and exercise, sleep, care of acute illness, and psychological support (treatment of depression, anxiety, apathy, etc.).